3 YEARS & clear EMG - Symptoms are worse!

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3 YEARS & clear EMG - Symptoms are worse!

Postby solarisle on October 13th, 2003, 4:26 am

My "BFS" has gotten so bad I don't sleep most nights and depression is really getting the better of me. I now have the constant muscle spasms all over my legs, arms, abs, shoulders and starting in my right eye lid.

EMG was clear this week - going for an MRI in about 3 hours. Seeing a new Neurologist who seems more in tune.

I used to exercise quite a bit but now every time I go to the gym, it starts up somewhere else on my body. I was holding steady for about 2 years but recently the fascics and the tremors are everywhere! It's like you go through stages which hold steady for a period and something triggers a new (and worse) level.
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Postby Pole on October 13th, 2003, 4:40 am

Hello Solarisle

Clean EMG after 3 years of sympthoms means that you have NO neuromuscular disease. For sure. Think about that - if your sympthoms are so strong now and this all lasts 3 years, EMG would MUST show something abnormal.

If I were you I wouldn't worry about ALS anymore.

regards
Marcin

ps. what do you mean spasms all over (how do these spasm look like?)
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Postby Pole on October 13th, 2003, 4:41 am

Hello Solarisle

Clean EMG after 3 years of sympthoms means that you have NO neuromuscular disease. For sure. Think about that - if your sympthoms are so strong now and this all lasts 3 years, EMG would MUST show something abnormal.

If I were you I wouldn't worry about ALS anymore.

regards
Marcin

ps. what do you mean spasms all over (how do these spasm look like?)
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Fascics and Spasms from a former Guillain-Barre Survivor

Postby solarisle on October 13th, 2003, 2:28 pm

Hi Marcin,

You asked about the fascics and tremors. My calves, feet, ankles, shins and thighs have a constant rapid wave-like motion that is visible. I also have these jerky tremors like a shot in my triceps and biceps. They come every 15 - 20 seconds. Also have fascics in my back, abs, chest and shoulders. Never goes away - 24 hours a day.

I am happy about the EMG but my situation is becoming unbearable. I have a very high tolerance for pain - but this is wearing me down.

I fought through Guillain-Barre Syndrome 13 years ago and I was paralyzed! Never gave up - but this is very different, very debilitating and mentally wearing.

Tom ( solarisle)
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Postby Floater on October 13th, 2003, 4:08 pm

waves sound like myokimia...which is common in isaacs syndrome....but with your clean emg sounds like you have a real bad case of bfs..ug
Do you have night sweats or any other symptoms that arent muscle related?
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Postby solarisle on October 13th, 2003, 4:28 pm

Floater,

Nothing else at night - get some headaches at times. Myokimia was ruled out as well last year. EMG was clean- I am starting to suspect some sort of residual from the GBS that was dormant for 7 to 8 years.

I am not aware of anyone that has BFS with simialar symptoms to what I have. The fascics and tremors are literally everywhere at this point.

I had an MRI this morning and will talk to Dr. Neuro in a few days. I have applied to Mayo as well and hope to hear next week.
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Postby jcavan4125 on October 13th, 2003, 5:18 pm

Hi,
Sorry to hear about all of your symptoms. Three years of symptoms and clean EMG rules out neuormuscular disease. Have you tried any meds to slow down the twitches (tegretol, neurontin, etc...). I heard that in severe cases likes yourself Cleveland Clinic has had some success with plasmaphoresis. You might want to look into that. Good Luck!!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Pole on October 14th, 2003, 2:12 am

I think that your jerks may be caused by stress and anxiety. When my fascics started and I saw that twitching may be a sympthom of ALS I had a fixation. My stress level was the highest in all my life. In those days I also had a lot of jerks (20 a day)- especially in arms and thights. Now I'm much calmer (but still not sure that everything is OK) and I have no jersks. So I think that is a stron connection between anxiety and body jerks.

I wonder if any doc saw your jerks? If you have them in every 15-20 seconds I think doc had to see them. Am I right? If so, what did he tell about these jerks.

regards
Marcin
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Postby Sahti on November 17th, 2003, 3:12 pm

What's this I hear about plasmaphoresis? I've never heard of it.
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Postby jcavan4125 on November 17th, 2003, 5:23 pm

Hi,

Plasmapheresis is a process similar to dialyisis except it involves the plasma not the whole blood. It is felt that BFS is likely autoimmune and therefore has a high level of circulating auto antibodies (thought to be directed against voltage gated potassium channels). The palsmaphersis is felt to filter out significant numbers of the antibodies resulting in a reduction in symptoms. This might have to be done periodically as it would be logical that the antibodies would build back up over time. The procedure is reserved for patients with severe symptoms. It is probably done at several different hospitals, but I know that Cleveland Clinic was the location that I had read about it being done. I hope that answers your question for you. If not let me know.
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Postby mstwitch on November 17th, 2003, 6:47 pm

Solarisle, I, too, share many of your symptoms and have just recently returned from the Mayo Clinic. I went there for complex medical issues, however, the muscle twiching and pain was MY may worry. Because of the twitching in my tongue concern was high that I may have a neuromuscular disorder. I was given an appointment just two days after my Internist made the phone call to refer me. Within one week I was sitting in my first doctor's appointment. If you would like more info, let me know. Good Luck to you. I am sure, given your prior tests, that all will be just fine. Hang in there!
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Postby garym on November 17th, 2003, 8:32 pm

I suggest trying trileptal or/and neurontin. They helped me with pain and anxiety.

Best of luck to you,
Gary
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Postby Twitchlots on November 18th, 2003, 9:50 am

Just want to add my 2 cents. While I was heavily reasearching BFS, I ran into many NMD's I had never heard of and one was called "rolling muscle disease". I don't remember where I saw it but it sounds like you. Google it, perhaps. Let us know how the Mayo appt goes. Thanks.
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