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Old 01-04-2005, 03:05 AM   #1
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Location: Cranbury, NJ
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SuzU HB User
Desperate-I need help!

I posted a few days ago about hot baths and how they effect me. I'm not kidding when I say that I literally collapse in the hot water, and even under the warm blankets.
Yet, to date, my ct scan, mri of the brain, and opthamology exam were all completely normal. I'm not unhappy about this, just frustrated, because my symptoms seem to be very rapidly progressing. I'm severely weak getting weaker and less able to walk and climb stairs, twitchy, and am kept awake all night with twitches, spasms, palpitations, and I tend to get apneic episodes that make me suddenly jerk awake for fear of dying. (Can anyone relate to these?) My arms and legs feel like spaghetti, and I sometimes have spastic movements when I overextend my hands in a certain way. I'm beginning to feel a saddle numbness in my groin, and difficulty swallowing. I've had other episodes of numbness, back pain, tingling, urinary symptoms, all resolved within a month or two in the past. The very first time I experienced similar, though much less severe symptoms to what I'm having now, and my doctor did a test for coxsackie B virus and I had a very high titre. He believed my symptoms were viral, and since they had resolved, I didn't pursue it. These have all been within the past six years and have mostly resolved with the exception of some tingling or numbness here and there. I thought I was having eye symptoms, but the opthamologist described them to me, and mine don't sound classic, plus my exam was negative. I don't know if it bears mentioning, but these episodes generally come on after I've been on an airplane and/or carried heavy luggage.
I'm going to a neurologist, hopefully today.
My questions are-does anyone have any suggestions for how I can get some sleep-relief from the twitching and spasms until I get a diagnosis and can get some treatment?
Next question-shouldn't I be getting some form of treatment, even though we're not quite sure what the dx is? I'm afraid I won't be able to walk by the time I can start treatment, and I'm also afraid if I wait too long, I'll lose function permanently.
Please help me-I feel so helpless and alone.
So far, all my labs have been normal as well, though thyroid studies have been ordered and not yet done. Previously when I had symptoms, the thyroid levels were all within the normal range.

 
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Old 01-04-2005, 11:15 AM   #2
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Re: Desperate-I need help!

Gosh, I'm so sorry to hear about all the symptoms you are experiencing. I would push a doctor to precribe Xanax or Valium to relieve the anxiety you are experiencing. Of course they don't like to give those drugs out very frequently. Have you tried any over-the-counter sleep aids?

It is frustrating when all the tests show nothing and the symptoms you are experiencing are vague as well. Doctors characterize things a little differently: there are symptoms and signs in disease. You are experiencing a lot of symptoms but no real signs. This doesn't make anything less real. Have you had any neurological tests done to test your walking and strength? These types of tests may show something.

Please keep us posted. I know that you are scared, but know that they are those of us who have/are experiencing what you have experienced and are surviving...

 
Old 01-04-2005, 01:14 PM   #3
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Re: Desperate-I need help!

Thanks Sunshine.
The doctor said the same thing about the symptoms and signs. He found minimal "signs" on his exam, I think mostly to do with my gait, my reflexes were fine. I have to go back in a few weeks for an emg-he doesn't think it is ms as much as a myositis or a neuritis of some kind, post viral or otherwise. Still says MS is a possibility, but putting that on the back burner until I have conclusive "signs."
I asked wouldn't it be prudent to find out via spinal tap and mri of the spine now, so that if it looks like ms we could aggressively treat it? He says without significant "signs, " there is no damage being done that aggressive treatment would necessarily reverse. I hope this is correct.
Thanks for the encouragement. It really helps to see that others have been through this with me.
The doctor did give me a prescription for Xanax.
I hope it works.

 
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