My Story.
 

At age 23/24, while I was going thru a very stressful and scary event, I had
my first notable MS symptoms. Didn't know it at the time and not bad enough
to seek a Doc, I just rode it out. Had some scarier symptoms in my late 20s to
early 30s, got married at 29, had a Child at 30 and still no Doc.

At 34/35, had my first MS exacerbation and ran to the Docs. After a bunch of
probing and treatments, Doc sent me to a Neuro and he put me in the hospital
for a week of tests. After a myleogram/spinal, the MS DX came. I suspected
and was ready for it...sorta..:eek::eek:.

I had many symptoms over the next 17 years, but really had MS Lite, until my
2nd mega exacerbation at age 53. that was the end of the beginning or the
beginning of the end? Went thru several Attacks & Meds over the next ten
years and then at about age 64, strolled over the bridge to spms..:eek::eek:
Stopped all of the usual DMDs and started LDN.:cool:. Joined here in 2006.:)

And here I am at 75 yrs young, none the worse for wear, 50 years after my
1st SX, 40 yrs after my DX, still going strong, although doing most of my
traveling in my scooter.:mad: I intend to see, at least. age 90,(God willing):)

I'd love to hear/see your stories, if you have one.
Please post it here! Thanks!:grouphug:

Nice story and to the point and short.

Unfortunately I tend to get emo doing 'my story' and can get quite long.

I'm currently writing a blog about my ms story, lol....wish it were finished, but I guess I could come up with a short version for now.

Thanks!

Yes, my short version. I've blessed you all with my biotches and pains
over the years, so left out the gory details.:D. That doesn't mean
that you newbies have to do that. :grouphug:

Well, mine has fewer twists and turns than yours Sally, but I seem to be incapable of telling it succinctly. So with that said, here it is for what it is worth:

In June 2004, at the age of 34, I had been working at a new job for about 3 months. After two years of helping two of my brother-in-laws ride in an MS150 bike ride (San Antonio to Corpus Christi, Texas), I had decided that I was going to ride as well. I signed up for a gym membership to start exercising again, with plans to start riding my bike again and training for the ride. The gym offered an "orientation session" to introduce you to the gym and help you set goals and plan to reach them.

On the day I was supposed to go to the gym for that orientation and start on my path to riding the MS150, I was sitting at my desk around 9:30 am and suddenly lost all the hearing in my left ear. Over the course of about 5 seconds, it was just gone. Imagine the feeling when you are going up or down in an aircraft, and your ears pop. That is what it felt like. I spent a few minutes trying to "unpop" my ears before realizing that wasn't it. I then took a quick trip across the street to a drug store to get some Qtips so I could clear out whatever was plugging my ear. That wasn't it either.

So I called my PCP. Surprisingly, they had room to see me that afternoon. So I went in to see him. He checked me over and when he tried to use a tuning fork to test my hearing a number of different ways, he was surprised to realize that I truly had no hearing at all in my left ear. It wasn't just lack of sound getting through, there was no nerve sensation coming from my inner ear. He left briefly, then came back and told me to go see an ENT...gave me their card and address...and said "don't bother calling them, just go. They are expecting you." That is when I knew something strange was going on.

The ENT was pretty puzzled. I had over 90 dB of loss in all frequencies in my left ear...what would be called "profound" hearing loss. I didn't have vertigo like they would expect with Meniere's disease. I didn't have signs of viral or sinus issues. So they sent me for an MRI and put me on oral steroids. I went for the MRI, and by the afternoon of the 2nd day, I hadn't heard anything from my PCP or my ENT. So I started calling both offices looking for results. Normally they would have already called and said "everything was fine"...but they hadn't.

That night, around 7-8pm, both docs called me back...both had the same message...there are abnormal spots in your brain. They could be nothing, or they could be a demyelinating disease such as MS. They sent me to a neuro who wanted a spinal tap. The spinal tap was negative for oligoclonal bands. By then, I was nearly 8 weeks out from the initial hearing loss and the hearing was starting to slowly return. The end result from the ENT was a diagnosis of "Ideopathic Sudden Neurosensory Hearing Loss". Which is fancy doctor speak for you lost your hearing and we don't have a clue what the cause was.

The neurologist was more descriptive but similarly non-committal. She told me that I had spots that were suggestive of MS. BUT...there were not enough spots or not enough in the right places to cause her to call it MS. At the time, I understood what she was saying to mean "I don't know what you have, but based on your MRI, I don't think it is MS". Today, I understand that what she was really saying was "I think you have MS, but your MRI doesn't show enough lesions or the right kinds of lesions to allow me to give you an MS dx under the McDonald Criteria".

By this time, I had missed enough training and working out time that I didn't ride the MS150 that year. I once again helped my in-laws and their team of riders. I did start going to the gym and exercising. In May 2005, I got out and started riding my bike. My first "training ride" was 4 miles around the neighborhood. Over the course of the next few months, I worked my way up to a long ride of a little over 50 miles in one day and ditched my 15 year old mountain bike in favor of a used road bike.

I rode the MS150 in October 2005 and it was brutal. The temperature was 95-100F and the heat index was 105-110F. We also had about a 10-15 mph headwind to fight against. I made it about 67 miles out of 90 on day one before I had to quit. I made all 62 of the miles on day 2 in similar conditions. At one point, I remember laying in a small patch of shade at a break point about 50 miles in and looking up at the cloudless sky. There were about 15 vultures circling over us, and I found myself wondering if they thought we weren't going to make it or if we just smelled that bad?

In 2005, I had an annual MRI to check on my condition. Nothing had changed and I felt fine. In 2006, I got an earlier start on my training, did a better job increasing my mileage, and had the joy of my wife joining me in training for and completing the entire MS150 ride from wire to wire that year in much nicer conditions. I felt great, had no further symptoms, and the annual MRI requested by my neurologist was almost an afterthought. I did the MRI as part of my annual physical and the written report said something like "No changes to the hyperintensities in the white matter of the brain." So I almost didn't even go to the neurologist. I mean why bother? I felt fine, there was no change to my MRI...

But I did go. On the day I was turning in the last money I had raised in the MS150 to the MS Society, I stopped by the neurologist's office for a quick visit. She took a look at the scans on the CD and came back into the room saying "I guess a picture really is worth a thousand words isn't it?" I looked up at her wondering what she was talking about, and then she told me I had MS. The rest of the conversation is mostly a blur now (as is about the next week of my life), but I do remember that she told me that the radiologist was correct about no changes in the respect that I still had spots in my brain...but now instead of 2, I had 7, and that was enough to allow her to Dx me with MS.

I started on Copaxone and went on with my life. But without really thinking about it, I started changing the way I thought about the future. I started thinking things to myself like "Is going to graduate school really a good idea, when I might not be able to work much longer?" or "If I really want to do a trip to hike in XX country, I probably ought to do it soon while I can still walk ok."

I was subtly taking in all the things I had read about MS online and assuming they would all happen to me sooner rather than later. It was a tough period in my life, but somebody online gave some great advice, and I am ashamed that I can't remember who it was. They deserve credit for it, so whoever it was, stand up and take a bow. They said "You have to live your life, not your disease." I took that to heart ever since then, and stopped worrying about when or what MS might take away from me.

I do have to admit that it has been easier for me to do that than it would probably be for others, since my MS has given me no overt flares and little in the way of physical difficulties since that first episode of hearing loss. My hearing never really fully recovered and I have trouble hearing conversations in noisy places. I had to stop riding the San Antonio to Corpus Christi MS150 and start doing the Houston to Austin MS150 because it allowed me to train in the late winter and spring instead of through the summer months. That was due to the heat just zapping my energy levels when I would ride. But otherwise, I have been remarkably lucky in how little my disease has progressed in terms of outward symptoms. I have a lot of cognitive issues that have gotten worse over time, but how much is MS and how much is getting older, I have no way of knowing.

So from 2006 to 2009, I was on Copaxone, doing fine, feeling stronger and stronger on the bike. Even though I was gaining weight, I was in better shape and felt better when I rode each year. So imagine my surprise in 2009 when I almost skipped my MRI. I thought "I feel great, why do I even need to do this?" Finally, the neuro's office called and asked me to schedule it, so I did. I went in expecting to hear the usual "You look fantastic...I would never guess you have MS just from looking at you!".

But I didn't. She brought me into her office and showed me the scans from 2008 and 2009 side by side, and my lesion count had doubled. Even with no flares or obvious new symptoms, my MS was still there. So I switched to Rebif, and have been on it ever since. United Health Care made two attempts to force me off of the Rebif and onto something else strictly to save themselves some money, but my doctors stood their ground and kept me on it. Special thanks go to the folks at EMD Serono and MS Lifelines for stepping in with their copay assistance program when United Healthcare decided to raise my copay to over $900/month.

Today, I find myself in an odd place. Over the last year, I have lost about 70 pounds and avoided becoming a diabetic. I have been taken off of one blood pressure medicine and had the dose of another cut in half. I am WAY faster on my bike and am probably in better shape than I have been at any time since college over 20 years ago. I just bought a new bike and picked it up two days ago to celebrate my weight loss. I just finished taking a Spinning instructor certification class and have started teaching Spinning classes after work at my gym.

So that is my story for now. I look back and shake my head at the vast difference between the picture my mind painted for me in 2006 of where my life might go in the next 10 years versus what it has become in reality. In April, I will ride in my 11th MS150, and in August my wife and I will celebrate our 20th wedding anniversary. If there is anything that causes me concern today, it is that every time I have felt this good in the last ten years, MS has found a way to remind me it is still with me. I will have another MRI on Friday morning...wish me luck!

Hi Sally, I don't think I have ever read your story before. Thanks for sharing it :hug:

In the spring of 1985, at the age of 24:

My husband (married 1981) was out of town on business. When my husband was out of town, which was quite often, I took care of all the yard work. Early one morning I hauled out the lawn mower and preceded to mow (keep in mind this was not the first time I had mowed but, was the first mowing of the season).

Normally I would cut both front and back at one time.

On this day I started in the back. About half way through the back my legs started to get weak, numb and pins/needles. I kept going but it got worse so I shut the mower off and went in the house.

Since the weakness, numbness and pins/needles continued I never made it back out that day. I woke up the next morning and felt fine so I went back to mowing. I couldn't even finish the last half of the backyard. My legs got weak, numb with pins/needles again. I had a hard time getting back to the house.

I never did finish the mowing.

The pins/needles, numbness and leg weakness did not go away this time and more symptoms were starting to pop up. I developed hand tremors, really bad fatigue, and the one that scared the poo out of me, Lhermittes.

I remember explaining to my husband how each time I bent my head down I had odd sensations from my waist down. His response? Stop looking down! :)

I made an appointment with my PCP. He listened to me, did an exam and said he would be back in a minute. He comes back in and says, I can't help you and handed me a referral to a Neurologist :eek: I had never heard of a Neurologist and didn't understand what this could mean (there was no internet at that time).

The Neurologist ordered x-rays, blood work, Myleogram, lumbar puncture, brain MRI and VEP. When I had the LP the Dr. showed me the spinal fluid and said, do you see how cloudy it is? This means there is something going on :eek: I had the Myleogram right after the LP and I scared everyone In the room. Apparently I turned as white as the towels, I thought I was going to pass out.

At my follow up appointment I was diagnosed with Multiple Sclerosis. When I was told I said, okay. How do we fix it? I was then told there was no cure and no medications. He did prescribe Prednisone for the exacerbation.

Complete and total shock set in. I had been married 4 years at this point and I was "only" 24. I did tell my husband I would understand if he wanted out of the marriage. He got angry and said he had no intention of leaving. We are still married (almost 34 years).

Over time I came to understand that I have had MS since childhood.

It took me almost a year to recover from that exacerbation and at about that one year mark, in the summer of 1986, I had my second exacerbation. We had our first child in 1989 and our 2nd in 1992. I went on to have 3 more exacerbations, 1994, 2001, 2002. In May 2013 I was diagnosed Secondary Progressive.

Thanks TX and Snoopy for adding your stories. I found them both great reading.
Thanks so much for sharing.:)

Next please.......

Thanks for sharing your story Sally. I hope I can keep mine fairly short and sweet.

I certainly knew something was wrong when I was just a child, it made me quite the dare-devil, and gave me a thirst to experience everything. As a kid I certainly didn't "know" exactly what was wrong but knew there was something. I met my husband when I was 14, entered a relationship after my 17th birthday. And then he spent the next 5 years convincing me to marry him.

23 I think was the first that my old PCP starting thinking something was unusual, I had walked the three or so miles to the store my mom worked at, spent the evening helping her out and visiting (insomniac hyperactive night owl) left around 4 in the morning and had a glorious 'superman' fall out of no where. Tore up my knees and hands pretty bad, though I still finished the walk home.

But it really baffled the doctors 2 years later when my back simply broke. 25 years of age, no major accidents or falls, no history of back pain. Was in a seated position at the time of the 'snap' but my job wasn't strickly sitting all night. At the time I didn't have insurance and ga doesn't have temporary disability. So I was left saving up what I could to get tests and such done.

ACLs tore, then the tendonsis, then the MCLs... My body was ripping itself apart as I lived on ramen noodles trying to scrounge up enough money to pay for the next test, the next doctor appt, the next pt visit. And odd as it is to say I was suicidal but never really depressed.

I had my whole life to prepare for the worse, felt I had spent my time well, I trained horses, worked as a riding instructor, wrote short stories, did bare-face rock climbing, ran track and field, played pretty much every sport known to (American) man and then some, could play half a dozen musical instruments, slept through college course and got A's. It was a good life, just a bad body and many a time I was ready to pull the trigger and enjoy the next life.

But I'm probably the tiny minority of people whom Obama care helped. As soon as enrollment for it opened, I signed up. With health insurance I was able to see the doctors, get all my tests done without pinching every remaining penny. And August 11,2014, after ten years of doctors finally noticing something was seriously wrong, I got my diagnosis. :D

My meds no longer have to stay in front of the knife block. I used to keep them there because when the pain was bad enough I was sorely tempted to grab one or two and slice open my femeral arteries, but if the pills were there I could take one of those first. I started on copaxone soon after my diagnosis, changed out all of my pain medications. And unfortunately have gotten worse lately. But things were much better for a time so I still intend to get back on track.

My husband and I don't have any children together, he had a vasectomy that we tried unsuccessfully to reverse (even more devastating to me than the !S diagnosis) but I do have two step-children, and now 2 beautiful and precious grandbabies.

I have a strong desire to travel, and can't wait until everything calms down a bit more financially for us so I can begin globetrotting :D. I'll get to be the spoiled American playing on a scooter around the Eiffel Tower.

Thanks for the thread Sally. Several of us have been on this journey together for a long time. We just didn't know how we got on this train.

I'll start out like Starz did. I knew something was wrong when I was just a child but found out it was only that my Mom gave me baby brothers!!!!:p

OK, I promise to be nice. I was out shopping in 1997, age 47, and noticed that my right leg wouldn't cooperate as well as the left when getting in the car. We finished shopping and went home. I was tired so I sat in the recliner, pulled the foot rest up and rested. But I found I couldn't move my foot or leg at all. Now being a nurse I should have been alarmed at that. But I knew I had several bulging disks and since I was a nurse used to diagnosing myself, and not knowing orthopedic or neurology very well I just said it was the bulging disk.

The next day everything was the same so I knew that something was really wrong but I didn't have nice gowns and underwear to wear to the hospital. So I went out to buy it. So by then my left leg wouldn't cooperate very well. I could slowly walk but if I as laying or sitting down the legs or feet had nothing. So I went home with my new stuff that was befitting a preacher's kid to wear in the hospital and did I call the doctor???? No, not yet. I had to take a bath, wash my hair and shave my legs. I knew I couldn't shave my legs to easily if I had back surgery so better do it now. So I finally called the doctor and was told to immediately get to the hospital, and to have some one drive me. So I called up my parents, who didn't even know anything was happening, packed my new belongings and went to the hospital.

I had a spinal and brain MRI the next day and played the waiting game. I walked down to my unit to see what they were up to and waited. At about 11 PM that night the neurosurgeon who was going to do surgery if my bulging disc had herniated came in and asked if I wanted the good or bad news first. I said good news. Joyce, you don't have a herniated disc. Bad news, you have MS. Then he left. Nothing more said!:eek: This was back in 1997, and the neurology unit's neurology books all were so outdated. I read all about the nurses job in MS was preventive care to take care of bed sores, pneumonia for aspirating, etc. Scared half out of my mind. To late to call my husband, didn't leave a sleeping pill for me. So the neurologist saw me the next day, ordered many more MRIs, EMG, everything. So after it was all over she confirmed the diagnosis. So I had one lesion involving all of the pons which all the nerves in the brain travel through to get to the spinal cord. Nice place to have one. Not.

I had an injection of acthar gel as soon as I had got to the hospital to reduce swelling so the symptoms were already improving but when I saw my neuro, I'll call her Carla, she ordered my first course of the IVSM. Quite a shock to have that first course of it.

Years later I had a short time of optic neuritis which made Carla to change the diagnosis from clinically propable to RRMS. I still just have the one lesion and have MRIs only when needed. I am left with cognitive difficulties, fatigue, pins and needles in feet and legs, some bowel and bladder issues.

But it was when she told me that the trigeminal neuralgia that I had already been diagnosed with back in 1992 that I had propably had MS since then. But then I though of all the vacations I took, all the work I did and I did it with no problems that I could do this MS thing. Sure I had to watch doing stuff in the heat but I could go on and not let this thing scare me.

I worked full time for over 2 years after my diagnosis and then had a big exacerbation mainly my legs again, took 2 rounds of the IVSM and then two rounds of the follow up prednisone to get it back to it's base line that I knew I had to quit work.

Just like the Batman, losing weight and getting back in better physical shape has done so much to make me a much healthier person and tolerate this much better.

I still count having MS as one of the greatest blessings that God has given me. It was the slap in the face that I needed to make me prioritize things in life a bit differently. Nursing was always first and then far down on the list were my family, God, church. My youngest was just graduating from high school and we were empty nesters so I was 'just a house wife'. But I was able to see where I had some things really messed up in life. I ca easily say it was and is a blessing because my MS isn't that bad. I can still walk fine, do mega shopping, go on vacations if I use a scooter on vacation. I stayed with my daughter a full week when she had both of my grand children. If I had been working I couldn't do that. I have been able to many things in life because I am at home now.

thanks for this thread sally. it's a heartfelt way to get to know each other's stories. here's mine,

i graduated nursing school in '71 in miami. i did several types of critical care and finally settled in NICU (neonatal intensive care unit). i moved to denver, co and was working 12 hr shifts. i began to notice my gait changing and every few seconds felt an electrical kind of whooshing in my left leg. it drove me crazy and i never could explain it to my drs better than that. i was 53 y/o.

my pcp did an exam and sent me to a neuro. i had an mri. they found 6 brain lesions and 2 in my upper spine. i had 2 O-bands in my spinal fluid. i knew an MS dx was possible and was mentally preparing for it, or so i thought. when i was given the dx it was still a shock, it was 2003.

working was becoming very, very difficult. walking up and down the halls for 12 hrs was exhausting. and i was caring for sick babies of which many were under open warmers. i was very heat intolerant and it was debilitating. one day i went down to the cafeteria for lunch and to cool off. i could hardly walk. i sat at the table and started sobbing. i was scared.

i thought if i went part time i could prolong my work life (and so i also gave up my long term disability). i was wrong. when my cognition wasn't as sharp as i needed it to be to work i knew it was the end. i spent 18 yrs at that position and was an RN for a total of 35 yrs. i was devastated. when i cleared out my locker and left that hosp for the last time i really grieved for my loss.

let me speed ahead. i was on copaxone for a total of 11 yrs. then stopped. thank God my MS course has been fairly stable. i have never had an exacerbation. i have some cognition problems, i can walk with a cane and i can drive. thank goodness my strong leg is my Rt leg. my Lt leg is weak.

i was dx'd with breast CA in '08 and had bilateral lumpectomies. thank goodness i've been CA free since then. i have a lot to thank God for. i moved to st. augustine, fl to retire with friends. that was '10. however, have had C4 surgery, then bilateral cataract surg, hand surg for trigger fingers and now last yr had L4 surg. i have more strength in my bad leg. it turned out that some of the problems with my leg were coming from my back and not the MS.

yesterday i had an attempt to remove and IVC filter put in during that surg which was unsuccessful. i fervently hope the rest of this yr i will be healthy.
i need to control my diabetes and lose wt. then i could be off half my meds and maybe even the insulin. that's my goal for this yr.

i've found that making a plan of action has helped me best. break things down. take one thing and day at a time. i feel i have more control that way.
a friend by your side doesn't hurt either. i'm also thankful for all of you.

Thanks, Sal Pal, for beginning this thread! It is so helpful to read others' stories.

I'd had heat sensitivity since I was a teen, and a dx of fibromyalgia when I was 31 after several years of dealing with pain and severe fatigue (an orthopedist who was treating my knees later told me he and his colleagues were seeing patients move from fibro to MS...I thought, what's MS?).

The first sx that brought me to the doc was a sleeping big toe. Huh...sent me for an EMG, which showed problems with nerve conduction in the right leg. Was referred to a neurologist.

Had an MRI, EVP and LP. The MRI showed several lesions, EVP was neg, LP was clear. The neuro, who was attempting to narrow his practice to migraine sufferers, told me he believed that the numb toe was from long nerve neuropathy, and the lesions were from migraines. I told him I'd never experienced a migraine before. "Sure you have, you just didn't know it.":confused:

So he put me on a migraine med, which gave me such severe headaches I wanted to cut my head off. I told him I would NOT take it any longer. Later that year he opted out of my insurance company, so I found another neuro--thank God...

He told me my lesions weren't in the right place for MS, but he'd watch me. A year later my left leg went into a severe spasm that locked my leg for a short time. I also had new sxs, such as cog fog and bladder/bowel problems. He did another MRI, and there were a few more lesions, still not in the right place, but dxd me with MS. He put me on MONTHLY infusions of IVSM and Copaxone, then had me see his PA, who during every office visit pooh-poohed every new sx I had.

I had heard of a neuro one hour away that specialized in MS (the current neuro was a stroke specialist). He sat with DH & me for an hour and looked over the MRI. Said even though the lesions weren't in the "right place" there is still ample evidence, based on increasing sxs, to call it MS, although mild.

He has been excellent at symptom management. He is conservative with steroid treatment, and was appalled by the previous neuro's overuse. He has taken me off of Copaxone after I experienced severe lipoatrophy, which is actually worsening.
I'm currently on no DMD, and he told me last month that two lesions have actually disappeared. My sxs are a bit worse, but I can still get around, love the grand babies, and live a wonderful life with my adorable DH. Life doesn't get any better!

I was diagnosed in March 2007 with MS after having a fairly severe exacerbation. I had noticed in the year prior to the attack that I was experiencing tingling in my legs whenever I went for a walk. I was also having pt for my right knee during this period because of pain from arthritis. A few weeks before Christmas 2006, I fell in my shower on the same knee. I was in a knee brace and more pt was ordered. I first has to use crutches and then a cane to get around.

A few months later I experienced a weird pain/tightening in my left rib cage. My pcp diagnosed it as costochronditis. A few days later I noticed that the left side of my torso (rib cage to upper leg) was partially numb. I went to the ER; it was the weekend and they said I had shingles. I went back to see my pcp on Monday and he said I had no sign of shingles and sent me to the ER at a bigger hospital in Champaign/Urbana. They did a MRI of my spine without contrast and said I had a herniated disc. I then had an appointment with spine specialist who said that was not true (had a few bulging disks) and I needed to see a neurologist.

My pcp then ordered a brain MRI and referred me to a neurologist. MY pcp called me in the morning of March 29th and said he wanted to see me. I thought I was going to be told I had a brain tumor, and was relieved when he tole me I had MS.:rolleyes: A few weeks late the neurologist confirmed the diagnosis after an additional mri with contrast of the T spine and a spinal tap which had o-bands in my spinal fluid.

He also believed I had MS for several years with mild symptoms. My left foot has been partially numb for about ten years, but doctors never really paid attention to the problem when I would mention it.

It took me about two years to recover to a degree from that first exacerbation. I use a cane to walk when I leave home, and I cannot walk very far without severe pain in my back and left leg. I have two lesions on my t spine and a few brain lesions. My MRI's have been mostly stable since the first year.

I ended up retiring from college teaching in May 2012, and I still miss it sometimes. However, I felt like I was doing the students a disservice because I just didn't have the energy to do a good job and I was getting sick a lot.

I have tried betasereon (allergic), copaxone (too many severe IPIR's), and tysabri. I went into shock during tysabri infusions and tested positive for antibodies. So I have not been on any dmd'd since 2008. I have tried a number of medications for symptom control, but I was either intolerant to them or they did not help.

Wow. Just Wow. You are all my hero’s. What you’ve been through and continue to deal with as a part of life, is an inspiration. Thanks for sharing your experiences.

Mine started in my teens, so it is long, but here’s 38 years of a weirded out immune system and its affects in a nut shell.

I was diagnosed at the age of 17 while I was attending university in Europe. I woke up one morning blind in one eye and the vision in the other one was blurry. The pain felt like I’d been poked in the eyes. The docs said that it was optic neuritis and that it was most likely due to MS. They gave me prednisone and I came home shortly after most of the vision had returned. That first bout of ON left me with 40% vision loss (blind spot), in the left eye.

A few months after returning home I had a digestive emergency which required an intestinal resection. I was diagnosed with regional enteritis & peritonitis followed the surgery for a perforated intestine. A few months after that they gradually got numb and then I pretty much lost the use of both legs. Transverse myelitis was the diagnosis but I recovered within a year from all of that. I was 19.

I was in my third year at university a couple of years later when I had another bout of ON, but at the same time I’d been having bouts of painful spasms in my right hip that I thought was a sports injury. I’d have to say that the hip thing combined with the ON was when I first started to learn about MS symptoms, stress and the whole package. It was then that I started to meditate, do yoga and learn about nutrition.

We tried prednisone for the ON but I had an allergic reaction to that and landed in the hospital. While in the hospital there was another drug reaction; to morphine, which was tried for the hip pain. Once things stabilized, I was given some muscle relaxants and sent home to ride it out, which took around a month. The docs blamed the regional enteritis for the drug reactions and I have been sensitive to a lot of drugs since then.

While I was in my last year at university, I fell a few times when my right leg just gave out while jogging and I dislocated & fractured the right shoulder on one of those falls. I saw a neuro after the shoulder surgery because of persistent numbness in the arm and he blamed it on the MS. The sensation came back some but never completely.

By the time I was 22, I had some residual symptoms of numbness, weakness and spasticity in the legs and spine along with visual problems that came and went. The severity of those symptoms now vary according to fatigue and other stresses.

I continued to have bouts every couple of years that mostly affected my legs but between bouts I worked, remained physically active (farming, biking and running mostly), and competed in equestrian sports throughout my 20s and 30s.

I fell in love with a wonderful man when I was 22 and after living together for a couple of years, we married. My then future husband knew going in that I had MS and said that he wasn’t bothered by its potentials, but I had to be sure so we waited to get married. I had a few miscarriages in the next couple of years and we gave up on having kids after we lost the last one at 16 weeks. MS was blamed for the miscarriages.

In my early 30’s I had a really bad bout of ill health that lasted for 2 years. In that time I had another attack of TM, MS, ON, Regional enteritis and was introduced to Autoimmune Hypothyroidism. I was so sick of seeing specialists, having tests and trying different treatments that I finally called it quits on all medication and doctors, retreated to the farm and hid out there until things came around on their own.

It seems odd to say this but one of the nicest things my husband ever said to me was in the middle of that particularly bad bout, “Even if your body becomes a quadriplegic, drooling mouth breather, I’ll still love you.” He never faltered. All in all, we had a good life and farmed, both worked off the farm in our respective professions and carried on through the unwelcome visits from MS and other autoimmune diseases.

When he was diagnosed with a brain tumor and then bone cancer, he refused treatment and we moved off the farm into town. I hired a nurse to help me look after him at home and I was blessed with fairly good health during that time. I was so grateful for that because it allowed us to be together at home for most of his last year. He passed away 10 years ago. We had been together for 22 years.

I’ll be 55 this year and the last 10 years have been challenging to say the least. A seizure and more MS symptoms put me in the care of a new neuro in 2010 and shortly after that he changed the diagnosis from RRMS to SPMS. Big deal, it didn’t change a thing. He can call it whatever he wants. I have my own term for it :p.

A couple of years ago another round of ill health began and it has been a roller coaster ride ever since. The immune system reacted badly to the Human Parvo Virus and caused a form of arthritis in the small joints of the hands and ankles. It took a while but we finally got that under control.

Right after that, a defect in the heart was discovered at which time I was also diagnosed with autonomic neuropathy. I’d been having trouble with my digestion, weird dizziness and narcolepsy and testing for the cause of that revealed the heart defect.

The neuropathy slows down the function of the digestive system and the heart. I had surgery to open a valve in the stomach so it would empty easier but have been on a fairly mushy (blender), diet since then. I also take digestive enzymes to help with digestion and things have been fairly good on that front lately.

The neuropathy affects the heart so that the heart rate doesn’t increase enough to meet the demand for blood during exercise or digestion of large meals (I avoid those but if the stomach doesn't empty properly, it does the same thing as a large meal). I take a CNS stimulant (Provigil), when things are really slow to keep the heart rate up so the guts digest food and so that I don’t fall asleep/pass out during the day.

I still exercise as much as possible because if I keep it healthy, the heart can beat with more force to compensate for the slow rate but unfortunately that increases my risk for stroke. I’ve had two in the last couple of years and am working hard at recovering from the last one now.

This last one hit in the thalamus and affected vision, cognition, memory and sleep. It has been a hard road back but I’m getting there.

I’m too old to die young so I’m in this for the long haul.
Sense of humor intact.:D

With love, Erika

erika,

your story touched my heart. i'm so sorry for the course of your MS and all you've been thru.

i was particularly touched by the loss of your sweet husband. i'm so sorry.
you're an inspiration in strength.

Yes, thank you all. I have been in tears and some laughter here.
I am re-reading them all.:grouphug:

Thanks for the read.

After reading your stories, I am so grateful to God that He has only put a little bit on me. And Erika, I would be afraid to go to sleep, afraid my heart would just slow down to much

Thanks for your stories and comments to mine.

While it is true that I did loose my DH, I must say that I gained far more in the time that we had together than I lost. So it is with others that I have loved and lost; for I have had such love in my life. I rest my mind on that and the love that I share with those who continue to be in my life, like all of you here.

Doydie, I can't think of a more peaceful & merciful way to move on from this mortal coil than to have the heart slow down until it painlessly stops while one is sleeping. I have no fear of death but when it is my time, such a process would be my preference.

I'm very much looking forward to others' stories, for in sharing them we all become stronger. :grouphug:

With love, Erika

These are interesting and heartbreaking stories. One lesson I learned is that MS doesn't burn itself out.
Sal, what a good idea to have us post stories. I know I remember the people, but forget the stories.

Here is mine:

Like many of us, I had vague symptoms since my 20s-- periodic crushing fatigue was all. At age @ 40 I got tingling in my hands, crushing fatigue, bizarre outbursts of laughter,
heaviness in pelvic zone. I asked my GYN and he replied, "What could possibly cause such disparate symptoms? " to which I said "How should I know? I thought I could tell you
and you might say, "It's the Tinkleberry Syndrome" ...


Two months before my big attack at 47, am now 63, I thought I had a bladder infex but the tests were normal. Then, my legs began to hurt and I felt like I was walking through molasses, needed a wheelchair for mall shopping. I gradually regained much of my functioning but not all.

Then it was MS Lite, just many mini flares, until 7 months ago-- wham! Legs and one arm became heavy and some spasticity. I am still trying to go into remission from that.

I took Avonex 2003-2004. In midst if injecting faulty batch, I nearly died from it causing
attack on my lungs and heart with permanent damage. So, I haven't done Meds since. I do Swank Diet and Ceylon cinnamon, rest 1-2 hours day, work only part time, swim daily, surf every week. Since my last attack, I can only stand up on smaller gentle waves. Big waves I have to lay down on or ride on knees. No big deal really.

8 weeks before my first big attack, age 47, I read that people only get MS under age 45. i shouted out to my husband, "Yay! One good thing about being 47 is I am too old to get MS" ...Dang it!

You said you had some slight symptoms from about your 20's right? So you had it before 47 right?

I was 25 when it hit me. I don't remember too much on any slight symptoms any earlier. I did get some weird sensations, but nothing I felt bad about. It was 25 when I started to feel something was not right.

What wonderful, inspiring, and heartbreaking stories you all have shared. Thank you to all of you who have shared your stories.

Back in 2002/2003 I had the worst rib cage pain. I had no idea what it was. I went to my PCP and he ran some blood tests and X-rays. All tests were negative and the pain eventually subsided. The pain returned again and I saw him one day while working at the hospital. He could see that I was still hurting and actually asked me about it and how I was doing. I told him it was back but since we couldn't identify what was going on I was just working through it. He said I was too young to have that kind of pain without a reason and asked me to make an appointment to see him. I did and he ordered an EGD to see if the pain was from my stomach. The EGD was normal with the exception that the nerves in my stomach were extremely sensitive. He then felt it may be autonomic neuropathy or something with my CNS and ordered an MRI. The MRI showed some lesions and he referred me to a neurologist. I saw her and at the time I had no clinical symptoms that suggested anything neurological going on. She explained that the lesions could be from old injuries, migraines, and/or a virus of some sort. I went on my way and just dealt with things for the next few years.

In the fall of 2005, I lost the feeling in my leg and it went numb with tingling. I lost my sense of balance as well. I went back to the neurologist who did another MRI which only showed 1 more lesion. She determined I probably had CIS MS. New Year's Eve 2005, in addition to the rib cage, more balance issues (wall walking/drunk walking), and leg numbness, I lost control of my bladder as well as some vision problems. I went back to the neurologist who then diagnosed me with definite MS. She recommended Copaxone and I started on that a month or so later. She ordered another MRI which showed a couple more lesions and a thoracic lesion.

It was kind of a scary time as I was a single mom who now could not work. I could barely walk and didn't drive as my car had a manual transmission. It was scary to think of how I was going to support all three of us. :eek::eek: I decided to apply for SSDI that May as it did not look like I was going to be going back to work again. It took me about a year to learn to walk again as I was constantly falling, especially when I made left hand turns. The neurolgist told me it would take about that long and she was right.

Being diagnosed was actually a blessing in disguise as DD's were both in high school (DD23 a freshman and DD24 a sophmore). I was able to stay home with them during that time and I think it benefitted all of us. I was granted SSDI and worked a little from home. Things were tight but we made it.

That's a brief version of my story.:D

I can remember back to weird things when I was a kid. No idea if they were related, but there was a month when I was about 9 or 10 years old, where I was dizzy all the time. I don't remember now if my parents took me to the doctor. I don't remember my mom being concerned at all, and my dad, even tho he's a nurse, was one of those people that figured if you're not bleeding from the eyeballs. You're ok.

I also remember my fingers twitching occasionally when I was in grade school. No idea if that was normal or not either.

When I was about 18 or 19, I can remember having weird sensations in my ribs. They'd feel tight, and sometimes they'd hurt. I thought it had something to do with eating too much food. But it would sometimes happen even when I hadn't just eaten.

When I was about 26 years old, (1995/1996) I had mononucleosis, and shingles at the same time. Just before I came down with both of those, I had a really stressful time. My dad's little brother died. Entire family was heartbroken, and I think that because it was stressful, and I was sad a lot at the time. That might be what lowered my immunity and why I ended up with mono, and shingles at the same time. I've read a few medical papers that link both mono and shingles to MS. So I've wondered for a long time if that's what triggered things.

It was later the same year that I started having weird episodes of vertigo again. At the time, they thought I was getting that as a leftover from having mononucleosis. When I had mono, my throat swelled up a LOT! And I actually went deaf for about two weeks/a month during the mononucleosis infection because of how much my throat swelled. It had also caused some pretty nasty ear infections, and I had a lot of swelling in the ear canals. I probably came pretty close to ruptured eardrums.

Aside from the vertigo, I'd started to notice some weird stuff. I'd wake up, and the tips of my fingers would be numb. It would usually let up before the day was over. Sometimes it would stick around for a day or two.

I remember in 2001, or 2002, I had some numbness in the top of my hip, and into my leg. That worried me, but I didn't go to the doctor.

I never really complained about any of this stuff to the doctor. My mom is a bit of a hypochondriac (well, not just a "bit". She is a full blown hypochondriac). I noticed that when she complained about a lot of stuff. She didn't get taken very seriously. And since I wasn't bleeding from the eyeballs, I didn't take the symptoms very seriously myself. Thought it was weird, and for some reason, I felt embarrassed about some of the symptoms. (no idea now why I was) So, I never complained about them.

Until one hot day in April of 2006, I was at the zoo with my now-exboyfriend. (he was still new to me back then). It was a really warm day. The zoo has a steam engine train, and exboyfriend had a model train store that he ran with his dad. So he had friends that ran the train at the zoo. The train conductors offered to let us ride up on the engine for a bit. So, we took them up on it. (not much room. Had to ride one at a time. exboyfriend went first)

It was really hot up there. They were putting coal (or wood? I don't remember now) into the firebox to heat up the water to make the steam. So it was really hot up there. The right side of my body was facing the firebox. At the end of the ride, I went to get off the engine, and I fell off because my right leg felt weak.

I also felt overheated. So we went and sat, and ate ice cream. I was trying to find my pocket so that I could give boyfriend money to go get the ice cream, and that's when I realized that my right hip had gone numb. I thought I pulled something when I fell off the engine, and that it would go away after a bit.

It didn't. Kind of got worse. A couple of weeks later, it had driven me nuts because it hurt too. (that was probably where I actually hurt myself falling off the train). So, I went to the doctor. The physician's assistant told me that it was a sprain. To go home and put heat on it. Heat didn't help. It made it worse.

So, I had numbness that entire spring, and summer. I could feel it wrap around my back sometimes. Felt like I had a backpack made of numbness on my back. Again, I thought that I hurt something falling off the train. Went back to that PA, and she kept telling me I sprained something, and that it would heal.

So, in mid August of that same year. I had a week where my neck hurt really bad. And my head hurt when I moved my eyes. My aunt told me it was probably a migraine. (and what is it with my medically trained family members not being concerned when someone has a "migraine" for more than a week, and doesn't suggest that it should be checked out?!?)

About a week after that started, I had the worst headache I'd ever had. So bad that I couldn't sleep, and it hurt enough to make me cry. I finally fell asleep that night, but woke up a few hours later. (which by that time was mid-morning)

I had a huge blindspot in my left eye. I went to tell my dad THE NURSE, about that. He was paying bills, and seemed distracted. I was panicked. Wanted to know why I had this blindspot in my eye. I pretty much had to beg him to let me go to the doctor. (back then, I was still at the point where I'd ask my dad permission for this kind of stuff) He wouldn't drive me. So, I got in my car, and very carefully drove myself to the emergency room.

My head still hurt a lot, and my eye hurt every time I moved it. So I was in constant pain.

The hospital thought I was a drug seeker. I told them I didn't want pain meds. I wanted to know what was wrong with my eye. I even refused the medication they offered. They told me to go to my regular doctor (it was a saturday), and gave me a discharge paper that said "subjective eye pain" as their diagnosis/conclusion.

The next week was pretty much a series of me going to see my regular doctor (the real doctor, not that PA), who sent me to an ophthalmologist, who sent me to a neurologist. (the ophthalmologist was the one who warned me that he thought it could be MS). The neuro sent me for an MRI.

The MRI place sent the results of the MRI to my regular doctor, my new eye doctor, and my new neuro. The PA from the regular doctor's office. The one who had kept telling me the numb leg was a sprain, was the one who read the results of the MRI, and she was the first one who called me.

The PA did not read all the way thru the report. She only read the first page, which did not have the conclusion of the results on it. Just some comments. When she called me, she told me that the MRI was normal, and that I was fine.

So, I was relieved for about...twenty minutes.

The eye doctor called me next. Before he could tell me the results, I told him the other doctor's office had called, and they told me I was fine. He had to be the one to tell me that they had found some lesions, but said that I had to talk to the neuro to find out what that all meant.

The neuro told me that he thought the "non-specific dots" were related to my history of migraines. Told me to call him if I had more issues.

Around Christmas that year, I had some weird tingling in my legs, and a lot of back pain. So my regular doctor sent me for an MRI because I'd hurt my back a few years before in a car accident. He had them add contrast to the MRI because he figured, I'd had optic neuritis earlier that year, and that there was some suspicion of MS.

That's when they found the lesion at C4, and one at T12. I got diagnosed with MS on January 9th, 2007. (weird...I forgot my MS-versary this year...). Because I had some weird symptoms when I was younger, that I can look back now and recognize and probable MS symptoms (vertigo, The Hug, weird numbness) I kind of think that I've had MS since I was at least a teenager.

I tried copaxone for a couple of years, and didn't like doing the shots. Didn't like the side effects. Didn't like being harassed by Shared Solutions calling me up every couple of weeks to practically threaten me to get me to do the shots. They were really really nasty. I started to not answer the phone when they would call.

I didn't have many flares the first few years. Then had a couple of optic neuritis flares. Then had a flare of drop foot. (got an AFO from that). Had a few other various flares.

On a non-MS health issue, I got frozen shoulder in the fall of 2013. Which was so painful! The pain was so bad, that I couldn't sleep. I had a hard time doing the physical therapy for some MS related stuff. Had to start using a walker, because the shoulder pain, and my shoulder being frozen (left shoulder) you kind of end up losing your ability to keep your balance if you can't move your shoulder.

I blame the frozen shoulder for why I ended up sitting, and not doing much for several months. Which deconditioned me, and I had to start using the walker a lot more. My shoulder got better, but my walking got worse.

Now I have to use a walker to walk around my house. I'm trying to build up the muscles that I lost in my legs from being so immobile from the frozen shoulder. Hoping that I can at least get back to using a cane. I'd be perfectly happy with a cane.

This has been a bad year. My exboyfriend (who I thought was my boyfriend till about october) had started to kind of ignore me around the time I got frozen shoulder. I didn't see him much. (he lives a town about 50 miles over). The last time I actually saw him in person was May 4th. The ten year anniversary of when I met him. He broke his leg in a motorcycle accident a couple of days after that. The pain meds he was on for the broken leg, caused a bad interaction with the diabetes medication he was on. His kidneys shut down for a few days. He was sick most of the summer. When he got better, I kept asking when he was going to come see me. I kept getting excuses.

Finally in october, he told me that he wanted to break up. This is when I learned that you find out who your friends really are when you have a progressive, chronic medical condition.

I don't totally blame him for dumping me. I actually have a feeling that he'd met someone over the summer that he didn't tell me about. (altho, it could have been earlier, because he did start to not visit me as much a lot earlier than when he broke his leg)

I wasn't sure that he had a new girlfriend until this weekend. I knew he had friended a girl on Facebook over New Years, because she'd tagged him in a post one day, and showed a picture of him.

Sunday morning, I woke up, checked my email. Then went and checked Facebook from my iPad. First thing that showed up on my Facebook timeline was a picture some valentines related stuff he'd given her.

The entire TEN YEARS that I knew him, I don't think he ever did anything like that for me. He took me out a couple of times. He never gave me roses, which I told him I was allergic to, so I'm not mad about that. But he'd always given me the impression that he was anti-Valentine's.

So, ok. I don't fault him for dumping me. I had been getting a feeling for awhile that he wanted to quit dating me. I'm glad he's happy. The pictures I've seen of her, she looks nice. What little I saw of her Facebook page, she seems like a really nice person. (I had to look, since she tagged him and the pictures showed up, and out of curiosity I looked at her Facebook page).

He'd finally gotten the house he'd been wanting to buy the entire time I knew him. His diabetes actually backed off on him because he'd done things to get healthy. I'm really happy that he's healthy, because I didn't want him to have health problems too. I don't believe in forcing a relationship when one of the people doesn't want it. So, I never fought him on breaking up. I'm just glad that he's happy.

I just miss having someone to talk to. That is the hardest thing that I've had to deal with, with having MS. I do miss having the benefits of having a boyfriend. But I miss actually talking to people.

I gradually lost ALL of my friends over the past few years, except for one. (person who has been my best friend since I was 16, and her daughter. So, I guess I have two friends). But I don't see her much. She's gone back to school. She's busy with school. I'm busy being sick. It's hard to coordinate time to hang out.

So, here I am, with no one to talk to, except the online friends that I've made on the internet. I'd joined an international crochet/knitting website, where I found a group of girls there that are seriously diehard fans of knitting, crochet, yarn, and Sherlock Holmes books, movies, and tv shows. That's where I spend most of my online time now. You'd think I'm obsessed with pretty English actors. (well, there you'd be right. I am obsessed with pretty English actors. It probably has something to do with the British accents)

I would really love to have some friends in real life, that I could talk to in person. But I don't get out much. I'm 45yrs old, and I swear my parents are almost in better shape than I am. (my dad has cardiac issues. I still think he gets around better than I do at the moment)

I think I can deal somewhat with having MS. But, it's the complete lack of social interaction that feels like it's killing me. I cannot seem to make any new real life friends to save my life. It's like everyone thinks the MS is contagious. Or that I'm going to run them over with the walker. I might be somewhat ok with letting the exboyfriend go. But getting dumped still did not do me any favors for my self confidence. I feel more stressed out by loneliness than I do by being sick with the MS.

and this ended up really long, and I don't feel like doing a tl;dr summary (tl;dr = Too Long; Didn't Read). A tl;dr would make it even longer.

Hope no one's eyes glazed over in boredom reading this, and that no one fell asleep during it. (I'd understand if they fell asleep, I'm boring, and then a lot of us have fatigue that makes you drop off unexpectedly) I tried to break up the paragraphs to make things easier to read.

Think I'm going to go to bed.

Thanks Erin. Yes, I had a lot of those strange happenings, as a kid.
Family thought, in the 40s and 50s, they'd just blame it on "growing pains":rolleyes::D

My first symptom was in 1987.....and I was pregnant with child #2.

At the time I had no idea what was causing the numbness and dizziness. I just chalked it up to pregnancy.

Fast forward to 2003 and both my legs went numb. I could still walk but it felt like my legs were asleep. Pine and needles feeling.

I went to the doctor who said it was probably a pinched nerve but wanted me to make an appointment with a Rheumatologist just to rule out some things. By the time my appointment came around the numbness had resolved itself so I cancelled the appointment. Must have just been a pinched nerve. :rolleyes:

Two years later (2005) I was driving back to work after having my eyes examined for new glasses. I didn't have my eyes dialated but my vision was all wonky....for lack of a better word to describe it. I noticed when I looked to my left things were doubled. So I just avoided looking to my left. I made it back to work but noticed all afternoon I had to keep closing my eyes tightly trying to get my vision back to normal.

I left work on time that day because I just didn't feel right. My vision was getting increasingly blurry and I had about 12 miles to drive to get home.

During the drive home my vision went completely double. I was petrified. By the grace of God I ended up behind an older gentleman who was traveling at about 30 mph (it was a 45 mph zone). I got right behind him and followed him closely until my street became visible.

I made a right onto my street and then a left into my driveway. Stumbled into the house and called my son who was still at work. I told him I was going to have to go to the eye doctor the very next morning (which was Saturday). I don't think he really realized how bad this all was.

Went to the eye doctor the next morning and they referred me to an opthoneurologist (?? not sure if this spelling is correct). I had an appointment for Monday afternoon.

I didn't want to stay home alone so I had DS drive me to work. I couldn't do anything but I wanted to be around people I knew.

My boss came in an immediately knew something was up. I told him I was going to get DS to take me to this new doctor but that I couldn't drive....I couldn't even walk by myself. My boss said he would take me which was a good idea because I really needed another adult to be there with me.

Off we went to this new eye doctor. They ordered an MRI and did lots of visual testing. I was told the MRI results would be back the following day. So, I waited.

Then I found out the doctor who ordered the MRI had gone on a two-week vacation and nobody else wanted to jump in at this point. I was going to have to wait!!!

When I told my boss all he said was "get your purse we're going to get the MRI results". And off we went.

When we got to the eye doctor's office he explained the situation to the receptionist and said we would be waiting until someone saw me and explained the results.

Lo and behold there was another doctor who could read the scans!! :rolleyes::rolleyes:

He hemmed and hawed around without telling me the exact results. My boss spoke up and said "What's the verdict? What's causing the double vision?" The doctor said he wasn't 100% positive but thought it looked like MS. He referred me to a Neurologist that was in the same building. We went just across the hall to his office.

At this point I had about convinced myself I had a brain tumor.

I waited for what seemed an eternity to see the Neuro. He was a very nice man who told me I have MS. Now, knowing that I didn't have a brain tumor I was relieved. He wasn't used to seeing that kind of a reaction to what he considered bad news. I told him what I had already diagnosed myself with and he laughed and said "well, I can see why you're relieved".

That was the beginning. I still had my balance. Six months later when my vision had cleared up I could walk normally and felt pretty good.

It's 9 years later now and my balance is terrible, I have voluntarily stopped driving, I have spasticity in both legs but my most noticeable sx is my bad balance. I really do walk like I'm drunk. I haven't worked since 2008 and I'm now on SSDI.

I've been on Copaxone, Betaseron, LDN and now I'm taking Tecfidera.

Waiting for a cure but not holding my breath.....

Thanks Kelly. Did the same to my Doc when he gave me the bad news. I said whew,
could have been worse. He agreed, although shocked at my response.:)

I forgot to say that my DH passed away 4 years prior to my diagnosis. I'm not sure how he would have reacted to my disease. I'd like to think that he would have been supportive and caring. That's what I'm choosing to believe but I knew him better than anyone and I'm still, at this point, not sure how he would have reacted. And that makes me sad.......:(.

I remembered asking the neuro if I could still have kids after he told me that I have MS.

not sure just why I asked that. I hate children. :rolleyes: Might have had something to do with having a boyfriend at the time, and not really knowing if I was going to change my mind about kids at some point. I don't think I ever have. Because I think that's one of the several reasons exboyfriend is my exboyfriend now. He wants kids. I'm not a fan of them, and I also don't know if I could be a good parent while being sick all the time.

LOL, I thought I was the only one that was initially relieved to be told I had spots in my brain that might be MS. I said "So it isn't cancer?" and the neuro said "nope." And I saw "Whew!" What strange emotions this disease puts us through...

Yes. But I thought my symptoms before I was 47 were just aches, pains, etc.never occurred to me it was something more significant!

Thanks to all of you for sharing your stories...MS binds us, and you're all a blessing in my life--I feel less alone knowing that you all push through your days as well, making the most of them.

And I agree that I was also relieved to hear MS--at least until the first shipment of Copaxone was delivered. When I opened the box and saw the syringes, I sobbed. MS became a reality...

My first question to the Neuro was "Is this disease hereditary? My two boys were my only concern at that point. He told me no, it wasn't. Of course, I researched it to death on the Internet (just like I have done for everything since the dx :rolleyes:). That is one thing I could not handle well.....the fact that I might have passed on this disease.

Like Kelly and TXBatman, I was relieved to hear the MS diagnosis as they thought I had a nerve tumor in my thoracic spine. I'll take MS over that.;)

I think I was actually laughing at the pictures of my skull and brain when my pcp showed my my MRI's. He started laughing too. I was just so relieved that I did not have a brain tumor and I knew two people who had MS and they "looked" like they were doing okay. :rolleyes:

Ah yes, Barb.."but you look so good"...:rolleyes:

When I've heard this I've always wondered what they think ppl with MS look like. Ghouls, perhaps? :Dunno:

I think we ought to make this a sticky thread, so all newbies can read and
won't feel so alone. I hate to see it get lost!:grouphug:

UP DATE: Thanks for the sticky!!!!

Just read some of your stories, thanks all.

Just reintroducing myself here.

I was diagnosed with MS in 1980 but had had symptoms that were cramping my style in a big way for a couple of years before that--lots of falls, and after walking a couple of blocks, I'd start to have what seemed to be back and leg problems, and sometimes my eyes acted up in weird ways. Electric-shock sensations in my neck. Some bladder problems too.

After yet another fall and yet another broken bone, I asked to be referred to a neurologist, who diagnosed MS after consultations with an otolaryngologist and ophthalmologist and lots of tests. There was no MRI at the time.

The ENT doctor found I had nystagmus probably caused by a lesion in the pons. Years later I started having MRIs, and by now I've had 5 of them, all showing MS lesions.

But none of the lesions have been enhancing, and so I've been lucky. I can still walk though outside my (small) apartment I use a rollator now. Since the mid-1980s I've had a manual wheelchair and I sit in it most of the time.

I use it on bad days when I can't even get around my apartment and if I have an appointment or some other place to get to, I take the paratransit van with my wheelchair. I don't know when I'm going to give out, and just staying in the wheelchair for situations where there is a lot of uncertainty works for me.

But I do try to walk at least 1,000 steps a day and check my pedometer at the end of every day.

I also have Type 2 diabetes and so far haven't been on insulin though I'm on a fairly strict diet. I've been eating a lacto-ovo-vegetarian diet for about 30 years now.

The eye problems calmed down over the years though I now have cataracts. I've been postponing cataract surgery and will probably keep on postponing it. My best corrected vision is now only 20/40 to 20/60 but I can get along.

I was plagued by kidney stones for about 10 years, and the pain was very nearly intolerable. I am very glad not to have had any more of that pain in recent years.

I have osteoarthritis that causes pain and stiffness, and a certain amount of swelling in my lower legs but aside from those issues, I'm doing OK.

Since moving to another state 10 years ago, I've had only a few falls and no bones were broken. I'm very lucky.

I don't do much and don't go many places. I shop online for everything and use a grocery delivery service or Instacart for groceries. I live in HUD rental housing that has been my salvation. It's even air conditioned.

I've never had a car. I don't cook much any more. In the last 10 years or so I've been eating frozen or packaged meals for dinner and limiting my cooking to steaming or boiling vegetables (fresh or frozen) and toasting a muffin or piece of bread in the morning. Life is much easier without doing so much cooking.

The neuro who diagnosed me thought that the first MS episode might have happened when I was 20 but it can't be proved because no one thought to look into it at the time. I had severe vertigo for no known reason, and I blacked out and fell, destroying 4 front teeth. Two more teeth had to be filed down to support the bridge that was made for the 4 missing teeth. I had another vertigo episode about 12 years later, and some episodes of inability to move my legs. But up until my mid-30s I was pretty healthy otherwise, except for frequent sinus infections that always required antibiotics. I had one or two of those a year. I'm glad not to have those any more either (knock on wood).

I also had many UTIs over the years.

My hearing began to go about 15 years ago, when I got hearing aids.

So that's my health history, if anyone is interested. I've been floating around on several MS boards for nearly 20 years and hope to be more active here.

I miss Sally so much :(

I was dx in 1988 at almost 40. I was lucky dx came quickly by MRI. No meds and if there were they would've taken credit for me being sx free for 13 1/2 yrs. I attribute doing so well to healing prayer and meditation.

I went on Copaxone for 2 1/2 years to find my MRI was lit up like a Christmas tree. I was then offered Tysabri which I started in 2006. It was my G-d send as I was physically going down hill and scared. I have been on Ty ever since and many sx abated and progression halted. I use a scooter, walker or cane because my R leg doesn't move well-other than that I'm doing mostly ok. If I had been able to go on Ty a year earlier I would be walking and dancing like I wish.

This is my story and I'm sticking to it ;)

Linda

Yes, Sally is greatly missed!

Linda, thank you for posting. Congratulations on staying with Tysabri--and I'm so glad that it's been helping.

Some months ago I heard that researchers were working on a new version of Tysabri that would make it possible for the infusions to be done at home. Have you heard anything about that?

I haven't heard about a home infusion. Even if I had, I don't think I would want to do that ??