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PostPosted: May 4th, 2003, 2:35 pm
by lee
I first want to start by saying I am very grateful this website exists and that it has been, at times, very comforting to me.

However I find myself continuously questioning what is going on with my body and having overwhelming fears that I have a horrible disease(namely ALS) that is going to take my life sometime in the near future. I have put off writing a message here because it seems like my symptoms are to numerous to even begin writing about. I have gotten to a point now however that I am so depressed it takes all I can do to get out of bed in the morning. I really need help! I guess I'll just start by giving as brief a history as possible.

I'm a 34 year old female.
My symptoms started off almost two years ago when I had an unusual occourance happen. I woke up one morning to find, when I looked in the mirror, that one of my pupils was dilated. A trip to the eye doctor, led to a trip to the hospital to have an MRI. The MRI showed that I had two white matter lesions in my brain. This of course led to a trip to the neurologist who did a neruo exam on me for symptoms of MS. The neurologist said that he did not feel I had MS and that these lesions were probably just normal for me. I felt better and went on about my life with few concerns.

About 6 months later I started having the dreaded twitches in my legs and tingling sensations. I got very scared that this was a sign of MS and went back to the same neurologist. An MRI of my lumbar spine was done and was clinically insignificant, just some mild disc degeneration of the spine. An EMG was also done and found to be completely normal. I was again assured by the neurologist the I probably had some nerve irritation but that it was not severe enough to show up on an EMG. Again I felt better and worried less about having MS.

Over the course of the following 6 months I began to have tremors in my hands and the twitches started to happen in my shoulders and arms and right leg also. I then did what I probalbly should never have done and looked up muscle twitching to find that it is a symptom of ALS. I became very scared and went back to the neurologist. Exactly a year after my first MRI of the brain, another one was done showing only the same two lesions and no new ones. The neurologist said that this was even more conformation to him that I did not have MS. I brought up ALS and he looked at me as if I were crazy. He said there was no way I had ALS, that he'd be able to spot that right away. He basically said that he thought the twitching was due to stress and that I needed to stop worrying so much. As for the tremors he felt they were of the essential variety and that the stress I was under was making them worse.

Over the course of the next 6 months things continued to worsen with more and more twitching and the hand tremors getting worse along with the new symptoms of widespread muscle pain and stiffness. During this time I had a MRI of the cervical spine ordered by a pain doctor with the results showing no clinical significance. Also was seen by a rheumitologist who diagnosed me with fibromyalgia. Was put on Klonopin by the pain doctor, and Zoloft by my internist. My job started to be affected as it requires a significant amount of manual dexterity and prolonged periods of standing. I was in a lot of pain and my fingers were begining to twitch a lot. If I pressed down on something with any force my fingers would just twitch and shake like crazy. Went back to the neuro guy, AGAIN, in November of 2002. By my insistance he did another EMG of my left leg and arm muscles, since that side was worse, and it came back completely normal. No fasiculations were even found. At this point he said put me on Inderal to help with the tremors and reassured me that I didn't have any kind of dreadful disease and that my fasiculations were of a benign nature probably caused by irritation of nerve endings.

Since November, my symptoms have continued to get worse. I had a lumbar puncture with completely normal results. My fingers twitches are continuous along with having widespread twitches that migrate everywhere in my body. I also get the vibrating muscles in my legs and feet. I have low-grade fevers on a regular basis. I've had tons of bloodwork done, including thyroid testing, and it's all normal. My muscles have continued to get tighter and tighter( which I read is also a symptom of ALS). To make matters worse, I was in a fairly severe car accident this April, and since than everything has just been magnified it seems like by a 100 x's. My muscles in my whole body are now tighter than they have ever been and my hands and fingers stiff and twitching continuosly.

Needless to say, I am at an all time low. I have gotten so depressed it's hard to function. I can't get it through my head that I am not afflicted with a dreadful disease, namely ALS. I don't really have weakness but my muscles are so stiff that it is hard to move them, especially my hands and fingers. I can't do my job as well as I should because of this, which is really scaring me. I just started physical therapy because of the car accident and so far it hasn't helped. I don't know how I'm going to continue to work with these kind of things going on with me.

I'm sorry this is such a long post! I didn't know how I could make it any shorter. I guess I'm looking for some reasurrance that I've done everything I should do and to see if anyone out there has experienced the same physical manifestations that I have, especially the severity of the finger twitches and the muscle stiffness.

Please help!


PostPosted: May 4th, 2003, 5:42 pm
by uber
hi Lee

Well that is an intresting post, and like yourself ive had strange problems overs the last 5-6 weeks, and im worried beyound belief that I have some horrible problem and I havent even seen my neurologist yet :(

I dont know what to say to you, I know you have come here looking for reassurance but with all that reassurance from so many tests all coming back negative then im not so sure what I can say to give you any more reassurance...all I can offer you is my support and tell you that others are going through similar experiences, no matter how many stories I read from people via lots of support groups/forums...symptoms & diagnoses of illness seem to vary from person to person..the one thing we do all have in common though is anxiety...Id be very interested to know how many of my symptoms would have presented themselves and how I would of dealt with them had I not read an article on MS 5 weeks ago.

If I was in your situation I would definately not be worried about ALS, after all this time its 100% guranteed you would have some kind of physical weakness, from what I can understand it seems as if you have a "percieved" weakness, also from what ive read its very rare for MS to have twitching as a complication and its even rarer for MS to present itself with twitching. What I can tell you is that even though MS can sometimes be hard to detect and it has been known for it not to show up to be able to give a definate diagnoses through all the tests you have had, it again is almost 100% that ALS would of shown, especially after all this time.

Like I said, I know this will help morally with your problem but not physically and after a few hours of reading this you will probably notice twitching of some sort of some strange sensory problem and go back to worrying again..I know this cause Its happened to me a hundred times now. Ive had a lot of these problems you had but mine have developed over the last few weeks, especially the random twitching in legs and almost constant twitching in toes, and like you if I have anything in my hands they start to shake sometimes, I can feel shakes in my neck sometimes too when I strain it in any way. Ive had problems in my eyes, which could be stress related as im constrantly rubbing them all the time, ringing in my ears, headaches, neck aches, you name it and its happened to me over the past few weeks, i still not had any visit with my neurologist like I said previously so I could still have something wrong with me, im so stressed right now its consuming my entire life..its my 1st thought on a morning and my last thought at night. I wish I could just be around people with similar symptoms to mine so they could relate to what im going through and id feel better and my anxiety levels would drop, but I guess the internet is the closest people like me and you can come to that.

Whatever happens with you, I wish you the best and please keep me informed on what happens.

PostPosted: May 5th, 2003, 12:25 pm
by jcavan4125
I can tell you with a high degree of certainty that twitching for 1 1/2 years without weakness and two negative EMGs six months apart, is not ALS. You may have BFS, but not ALS. Sounds like anxiety management would help you out alot! Good Luck to you.

PostPosted: May 6th, 2003, 1:38 am
by tlotoxl
some of your symptoms seem pretty similar to mine, lee.

i haven't experienced tightness aside from my left middle finger, but i have widespread twitching (and have had it for three years aproximately) that comes and goes, a constant postural tremor (mostly in my left hand) and my legs and arms can be pretty rubbery sometimes. i also had an ocular migraine last year, the first one i've had in my life, and combined with some recent feeling of exercise intolerance, i couldn't help worry about MS. i had a CT scan last year after some very bad headaches, but i haven't had any MRIs or MS-related tests. an EMG I have had, and it came out clean. other visits to the neurologists have resulted in diagnoses of BFS, a sleeping disorder, and maybe essential tremor.

i'm not really all that reassured by it those neurologists sometimes (particularly at night), but ALS is the last of my fears now. not that i don't worry -- PD and MS still provide me with lots of room for obsession -- but i just don't think at this point that my symptoms are in the least bit consistent with ALS. it doesn't sound to me like yours are either.

PostPosted: May 6th, 2003, 10:20 am
by DogBone
Lee --

No way. That is all I have to say, no way do you have ALS. I have never read of anyone with ALS that started like you are talking about. Just reading your post made me think how ridiculous you are being, although I was just as bad. You do not have it -- you need to move on.

I know it is not easy, but rest assured that you do not have ALS. I would bet my car on it.


PostPosted: May 6th, 2003, 5:29 pm
by Floater
you dont have als.

PostPosted: May 8th, 2003, 11:03 am
by lee
Hi everyone!

OK, ok I rest my case, for now at least! When I had my original post I was coming off a bad week and feeling very down in the dumps. Now I can see that I was being over-reacting to my emotions. I have some good days and some bad days. Lately it seems like many more bad than good.

I realize that BFS manifests itself in different ways and to different extremes with each individual. I also know that the car accident I had probably has a lot to do with how I have been feeling, knowing that stress can make things worse with BFS. I was really relieved to hear from all of you that you thought it was very unlikely to have ALS. Even though I pretty much know that logically, my fears have tended to get the better of me over the last couple of years. So again, thanks to all of you for bringing me back into reality! :)

I wanted to say to Uber, I can totally relate to much of what you have said. I too have periods where I am thinking about my symptoms when as I go to sleep, and as soon as I wake up. Part of that is, as my neurologist said, is that I am laying still and noticing everything thats going on with my body at the time, whereas during the day when I'm busy doing other things, I may not notice a lot of what my body is doing. I also think that I twitch more once my body is winding down and when it is "waking up". Who knows maybe I'm twitching all night when I'm sleeping and just don't know it. although my husband has never mentioned anything to me about this. I hope you appointment with the neurologist reveals good news for you and that it helps to put your mind at rest. I also know from my experience that sometimes I have been convinced that everything is going to be ok, and then have had a few bad days, and I go back to thinking everything is not ok. It seems, from what I've read here, that a lot of us go through this from time to time.

I also am wondering, because I haven't seen this too much in the forums, if others have the same symptoms of muscle tightness that I experience so much? Does this come hand-in-hand with BFS or is it something else entirely, like Fibromyalgia?

Thanks again everyone,



PostPosted: May 9th, 2003, 10:01 pm