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Old 02-17-2015, 04:52 AM #21
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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.
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Old 02-17-2015, 12:51 PM #22
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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"
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Old 02-17-2015, 01:48 PM #23
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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.

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!!

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.....
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Old 02-17-2015, 03:18 PM #24
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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.
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Old 02-17-2015, 03:37 PM #25
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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........
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Old 02-17-2015, 04:01 PM #26
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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. 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.
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Old 02-17-2015, 05:30 PM #27
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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...
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Old 02-17-2015, 07:07 PM #28
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Quote:
Originally Posted by Lumia_black View Post
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.

Yes. But I thought my symptoms before I was 47 were just aches, pains, etc.never occurred to me it was something more significant!
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Old 02-19-2015, 09:44 AM #29
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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...
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Old 02-19-2015, 10:15 AM #30
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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 ). That is one thing I could not handle well.....the fact that I might have passed on this disease.
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