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."

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. 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 .

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.

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.

Thanks for the read.