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Multiple Sclerosis Message Board


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Hello all ~

WAIT! Please don't be deterred by the length of this post and move on to the next. It might be the longest post ever in the history of Healthboards, but I really need someone to help me or provide some sort of insight into these strange and awful things I have been experiencing. I would really appreciate it.

I have posted on this message board before and I usually end up giving up because I don't have a diagnosis of anything (((yet))) but I KNOW there's something wrong. I have an appt with a neurologist at UT Southwestern in April, but my symptoms are driving me crazy and are really starting to affect my quality of life in a way that I may be a danger on the road while driving. I keep going to various specialists for treatment of one ailment or another and never get any real answers. Everything always comes back to a list of combined symptoms that point to MS. I've been searching for years, but now it's really getting out of control.

So in addition to various digestive and bowel problems, recent episodes of restless (leg AND arm) syndrome (not diagnosed but I can only imagine that's what it is), mild to moderate involuntary tremors in my hands and neck, extreme fatigue, sleep problems, a mild Hoffman's sign, neck and abdominal pain, weight gain, bloating, an onslaught of other problems have been plaguing me for the past two months and I feel like I'm going nuts!

Approximately three months ago I was driving my daughter to daycare early in the morning, planning to work from home. I woke up as usual, was tired but nothing out of the ordinary, and took her to her sitter. On my way back home I suddenly felt an uncontrollable urge to fall asleep. And when I say it was uncontrollabe, I could not keep my head from bobbing or my eyes open. I did everything I could, including spreading my eyelids open to see, but my eye balls kept rolling into my head. I made it home, but it scared me so badly I told my husband. Well, it didn't happen again for about 2 weeks on my way to work. I have an hour commute to work and felt fine and awake until approximately half way there and I started to nod off. I was swerving, trying to open my eye lids, open my windows, turn up the music, call someone. Nothing worked. It felt worse than if I was bombed drunk trying to drive. Again I just passed it off as a fluke. But it was SUPER scary.

Well, within a couple more weeks it started happening more and more often, especially while driving, until now it happens every day. Some days it's so horrible that I literally come within inches of running into the car in front of me in traffic, my head falls backwards and forward, my eyelids become so heavy I cannot, no matter how hard I try - even physically holding them open, only to have my eyes roll back. And it happens the ENTIRE way, not just for a minute or two. It's so bad that I sometimes think while it's happening that there is NO WAY I'm going to be able to get out of the car and walk into the office. But I always can. It is SO dangerous but I HAVE to work. There seems to be no rhyme or reason to it: a good night's sleep or bad night's sleep; it doesn't matter. BUT, it had never happened with my daughter in the car or in the afternoon until...

I was coming back from a trip to Houston with my daughter to visit my mom for the weekend. I slept SO much that weekend and it was awesome. I contributed it to stress because I had finished a very stressful couple of weeks at work. I was well rested when I left on Sunday. About an hour into the drive, middle of the day around noon, I had another "episode." It came on so suddenly out of nowhere that I barely made it to the first exit, and ended up in a grocery store parking lot for a 10 minute power nap with my two year old child in the car. It happened THREE TIMES on that drive home, each time so suddenly I had to get off the road IMMEDIATELY. It's also happened during the workday twice (including TODAY), but doesn't happen nearly like it does while driving. Luckily I work independently and wasn't missed while I stumbled to the bathroom to put my head down by the toilet paper before I fell out at my desk!

I went to the doctor and begged for something RIGHT AWAY before I had an accident. My doctor put me on a stimulant medication for ADD to keep me awake. She also said that I should have a sleep study as soon as possible. I did, and everything was normal - no apnea or irregular sleep problems or interruption. Now I have a test scheduled for narcolepsy next week. Although it seems like a debilitating illness to be dx'ed with, at LEAST I would have ONE answer.

The next symptom is more annoying than anything else. When I was first "tested" for suspected MS in 2009 (MRI showed no lesions and that was that), I suddenly started to experience these painless, electric shock sensations. Out of nowhere they would happen repeatedly and would almost knock me off my feet. I told the neurologist and he acted like he'd never heard of such a thing. Exasperated, I looked it up online and found something that talked about anti-depressant withdrawal causing a shock-like sensation in some cases. Although my dosage hadn't changed in years, I do take anti-depressants and just chalked it up to that. It lasted for a couple of months; then as suddenly as it came, it went away for almost two years!

About two weeks after this onset of falling asleep at the wheel started happening everyday, I started having these "shock-attacks" again. This time with a vengeance! Since it happens so frequently and is so annoying I started to try to keep track of when they were happening and what I was doing, thinking maybe I could modify my behavior in some way or anticipate them. I noticed that they seem to happen with some type of movement, but can and do happen while I'm sitting but not as often. And it primarily seems to start in my face and go down my arms and lasts for about half a second; although that too, changes. I also have experienced this annoying tingling down my arms, hands, and sometimes my toes; and again, started experiencing not-infrequent episodes of a tingling/skin crawling-type of feeling in my legs and often in my arms that I guess is RLS but I have no idea. However, the electric shocks are relentless and happen all day, everyday. My medications have stayed exactly the same since before 2009, so it shouldn't be withdrawal symptoms, right? If so, why would it have gone away for almost 2 years and come back when there has been no issues or changes in my medications at ALL? I get zapped all day and it stuns me, mostly when I'm walking to the bathroom or printer or at home, the kitchen or bathroom. If both my 2009 and 2011 MRIs of my neck show the same thing, why would I get the symptoms and then go away? Wouldn't the problem remain the same? Thank goodness it's not painful or I wouldn't be able to work.

And this post is getting ridiculously long, but please bear with me.

Also, around this same time period, I started having TONS of spasms, twitching and cramping all over, mostly in my lower back, abdomen, and legs. The back spasms/muscle tightening could get so bad I couldn't stand up. Once it happens one time, it happens ALL day, all over my body. Then as soon as it came it would stop and I wouldn't have it for another week or so. Sometimes it will be many days in a row without it, and with it. Lately it hasn't happened, probably going on a week.

And last but not least, my vision has occasionally become blurry and at the same time my eyes "shake" back and forth. Unlike may of you, however, I don't get the impression that others notice my shaky eyes. My vision gets blurry (not double vision), and my eyeballs feel like they start shaking horizontally super fast and I can't see well. Yesterday it happened all day long, over and over and over. It was difficult to read or concentrate because it would make it very difficult to see anything. It would happen intermittently, every 30 seconds or so - shaky, blurry, normal, shaky, blurry, normal...etc. At the same time my head would jerk spastically. Again, I'm sure no one could even tell, but I was very self-conscious about it.

Recently I changed my diet to see if maybe it could be some type of vitamin deficiency causing these things. I went on a juicing fast to detoxify with veggies and fruit all day. The electric shocks seemed to subside. But then about 4 days later have come back and haven't stopped, even though I'm continuing to eat healthy. I feel absolutely fantastic, full of energy one day; then the next I'm lethargic, extremely fatigued, achy, eyeballs shaking and being shocked continually.

There is something wrong here and I am so afraid I'm going to go to the neurologist and come back with no answers - AGAIN. The falling asleep at the wheel, the shocks, the shaky eyes and spasms...it's difficult to work or do anything else because it is happening all day, so I am CONSTANTLY aware and it drives me crazy. When I look up any one symptom, even by itself, the first thing that pops up is MS. Do ANY of these symptoms sound familiar to anyone? I am at my wits end, and if the narcolepsy study comes out negative I don't know what the heck I'll do. I will not have a single answer for ANYTHING. (sigh) Back to square one.

I've read so many of your posts on here and I can identify with some of your symptoms. However, I haven't experienced any burning pains or much pain at all except with the cramping; and I have had no "foot drop" or instances of paralysis or difficulty walking.

Anyway, I know this is super long and I apologize. I just need some help and advice, some direction, some understanding, anything at all...

Thanks everyone for listening.





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