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Almost six years of symptoms-no dx yet-please respond!

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Old 01-15-2005, 04:29 PM   #1
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Almost six years of symptoms-no dx yet-please respond!

Hi everyone,
I've posted a few times on this board because I've developed symptoms over the past few weeks. The problem is, I seem to be getting hit by a Tsunami of symptoms-is this normal?
I have extreme weakness of both legs, both arms, bladder leakage, swallowing difficulty, impaired fine motor coordination, twitching, spasms, pain, chest pain, areas of decreased sensation in my skin-all getting progressively worse. It seems to me that most folks with ms may have a few of these symptoms in an exacerbation all at once not all at the same time-is this incorrect?
I've had mild symptoms in the past, the chest pain, the bladder symptoms, the swallowing, etc-all that I had attributed to pinched nerves, viruses, etc. All of the milder episodes eventually went away on their own-the longest of symptoms lasting almost two years and still recurring from time to time (the chest pain, which I always thought was stress related.)
All of my diagnostic testing is still coming out negative (mri of brain and spine, all bloodwork, etc.)
I can't imagine what else this could be, but the neuro is reluctant to do a lumbar puncture-and I'm not convinced it will come out definitive.
This is so frustrating to have so many symptoms and no treatment.
Has anyone else had this experience, and do I have any hope of feeling better or somewhat normal ever again?

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Old 01-16-2005, 12:36 PM   #2
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Re: Almost six years of symptoms-no dx yet-please respond!

Thanks for the response. I've actually had my thyroid tested, among other things, Lyme, coxsackie, lupus, etc-all negative.
Today is the worst day with symptoms yet-areas of numbness all over body-I think I'm about to lose my walking ability-I guess folks here can relate.
Having difficulty even holding up my head, tremors of head, lips, the inside of my mouth, etc.

Old 01-16-2005, 09:05 PM   #3
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Re: Almost six years of symptoms-no dx yet-please respond!

I too have had symptoms for 6 yrs with no dx. I have also had all the tests for ms, thyroid, lupus, lyme, and a trillion (lol) others all negative or non specific. My GP is convinced it is ms. I have had progressively worsening spasms (like hundreds of tiny charlie horses going off at same time) for 2 1/2 yrs this has become very painful. Recently I have started to get muscle twitches. They occur anywhere including legs, arms, face. They occur about 20-30 times a day. I have no loss of function but extremities tire quickly with activity. GP is sending me back to the neuro which i don't think will help but willing to do anything for relief of pain. Oh forgot what started the ms quest if i dare call it that, was optic neuritis 4 yrs ago. Before that they were looking at lupus and a bunch of other auto immune conditions. So I know where you are. I am there too. I hope we both find a diagnosis whether it is ms or not. Actually I don't care as much about dx as i do relief. Hang in there. Here's to symptom free days.

Old 01-17-2005, 01:04 PM   #4
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Re: Almost six years of symptoms-no dx yet-please respond!

Thanks everyone for the response.
I will need to get my hands on those thyroid study results-they are at my doctor's office, I don't remember what they were.
M.Abbott-have you had an emg-nerve conduction study yet?
Your symptoms sound like BFS (benign fasciculation syndrome) or cramp fasciculation syndrome. My husband was dx'd with BFS and it is often brought on by a virus and can linger for several years before going into remission. He had emg/ncv just to rule out anything more ominous. His twitching is in a remission right now, but occasionally, it flares up again. His are generally limited to one or two parts of his body at once, but some folks can have them everywhere, all the time, like you are describing.
The muscles do tire as a result of the cramps and twitches, but there is effective treatment and it is considered a benign, though uncomfortable condition that doesn't cause long term damage.

Last edited by SuzU; 01-17-2005 at 01:06 PM.

Old 01-18-2005, 09:41 AM   #5
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Re: Almost six years of symptoms-no dx yet-please respond!

Not to discourage you, but it took about seven years of different symptoms before I was diagnose with MS. There are drugs to ease the pain and discomfort. Hang in there.

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