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Jennifer
Jennifer, Board Certified MD
Category: Medical
Satisfied Customers: 79
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Can cramp-fasciculation syndrome progress over a 10 year

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Can cramp-fasciculation syndrome progress over a 10 year period?

Good afternoon. Typically the disease does not progress. You were diagnosed with this?

Customer: replied 2 day ago.
yes
Customer: replied 2 day ago.
I was first diagnosed with BFS in 2007 and had EMG testing and full workup
Customer: replied 2 day ago.
I believe and was told the conditions developed and / or was exacerbated by high levels of stress and anxiety

It can, it's fairly rare disease. Do you feel like your symptoms are worsening?

Customer: replied 2 day ago.
After several opinions that it was BFS I accepted the diagnosis and forgot about it

And now the symptoms are worse?

Customer: replied 2 day ago.
I did notice that during periods of stress my fasciculations would worsen and then subside but in Sept this year I developed sudden onset of muscle pain and cramping along with worsening of diffuse fasciculations
Customer: replied 2 day ago.
I have spoken with a neurologist who thought it was just another manifestation of my BFS which he feels I have had for many years
Customer: replied 2 day ago.
I was under a tremendous amount of stress at the time the cramping and myalgias developed

When was the last EMG?

Customer: replied 2 day ago.
while they have not gotten any worse over the last 5-6 months, they have persisted
Customer: replied 2 day ago.
oh a long time ago
Customer: replied 2 day ago.
at initial diagnosis, like 2008ish

Any changes in medicaion?

Customer: replied 2 day ago.
i have not had any weight loss, if anything, weight gain, a little
Customer: replied 2 day ago.
i was taking Lisinopril at the time, which was relatively new to me
Customer: replied 2 day ago.
I do not have any weakness, increased fatigue, or loss of coordination
Customer: replied 2 day ago.
what bothers me is there is so little good info on BFS or cramp-fasciulation syndrome out there
Customer: replied 2 day ago.
people bascially say, if you don't develop weakness or muscle atrophy it's not MND
Customer: replied 2 day ago.
but I have read some papers that suggest a possibility of cramp-fascic developing into als over 4-5 years or more
Customer: replied 2 day ago.
all papers i have read have shown emg usuallly normal if no muscle wasting whether the patient eventually goes on to develop als or not

Did they ever do a muscle biopsy?

Customer: replied 2 day ago.
so i'm reluctant to get one at this time. If its positive then do I put my complicated life on hold? what if it's a false positive? If it's negative it just means there's no dennervation at this time adn I'd basically have to repeat it in 4-5 years
Customer: replied 2 day ago.
nope
Customer: replied 2 day ago.
as a kid i did have a tendency to get leg cramps if i got dehydrated in an athletic competition
Customer: replied 2 day ago.
more so than most people i would say

Was a muscle biopsy ever considered?

Customer: replied 2 day ago.
most of my symptoms now are in my upper extremities and I do do a lot of typing on computers and cell phone so I don't know if I've always had this cramp fasciculation tendency and I'm aggravating it with my increased levels of stress and overuse of my hand and forearm muscles or if there really is something insidious here that may not show up for several years.
Customer: replied 2 day ago.
not that i remember, the neuros i saw reassured me
Customer: replied 2 day ago.
it was only after 2 opinions and my persistence that one neuro ordered extensive testing: MRI, EMG, extenstive lab work

Ok. It may be something to consider if things get worse. Did they ever try treatment?

Customer: replied 2 day ago.
when everyghing was normal he agreed with the prior opinions
Customer: replied 2 day ago.
i am taking supplements right now, coq 10 but nothing else. was told i could try carbamazepine if it got worse

Yes carbamazepine has shown some benefit in case studies

Customer: replied 2 day ago.
what scared me was the sudden onset of my upper extremity cramping-like symptoms that seemed to spread rapidly over 2-3 weeks. I began fasic'ing like crazy and had weeks of poor sleep due to anxiety after the symptoms developed
Customer: replied 2 day ago.
I guess, aside from more aggressive testing the only thing is to wait and watch...and be anxious...lol

Do you take anything for the anxiety? Anxiety can be a very powerful thing and can play out with your symptoms.

Customer: replied 2 day ago.
i don't but i'm trying to reduce my stress level by eliminating stressors, adding more cardio, eating better, sleeping better, etc
Customer: replied 2 day ago.
i tend to be an anxious person, type a, adhd, etc

All good things. Try to avoid caffeine as well.

Customer: replied 2 day ago.
i know. sucks. i love coffee and espresso :(

As you said though, there is not that much that can be done so try not to focus heavily on it.

Customer: replied 2 day ago.
i was consuming a lot when this all began but have all but eliminated it
Customer: replied 2 day ago.
do you know of any good sources or experts specifically on cramp-fasciculation syndrome?

Where are you located?

Customer: replied 2 day ago.
have you every hear of anyone having BFS for >10 years then progressively developing worseing of symptoms morphing into ALS? Louisiana

Online I like the American Academy of Neurology. They are a great resource. I am not aware of a progression to ALS.

Customer: replied 2 day ago.
wish there was more understood of these disease processes and their overlapping symptoms. seems a lot of poeple suffer from anxiety due to this kind of stuff
Customer: replied 2 day ago.
ok
Customer: replied 2 day ago.
I also read that usually als presents in one limb or focally

Yes. When diseases are not common the less data we have to go on.

Yes and ALS is a rapid progressor so more than 10years of your symptoms seems very unlikely.

Customer: replied 2 day ago.
neuro told me it would be highly unusual for my cramping and fasics if due to als to spread to rest of body so rapidly
Customer: replied 2 day ago.
well, it seemed like when i turned 40 everything started going down hill....LOL
Customer: replied 2 day ago.
first cavity ever. development of blood pressure problems
Customer: replied 2 day ago.
developing the above symptoms

unfortunately the body peaks in late teens/early 20s, then aging begins

Customer: replied 2 day ago.
i guess main thing to work on is stress management
Customer: replied 2 day ago.
not push my body so hard

Easier said than done but yes try.

Customer: replied 2 day ago.
could fibromyalgia cause my muscle symptoms? cramp-like sensations? pain soreness with muscle use? I do have some sensory symptoms: occasional numbness and tingling
Customer: replied 2 day ago.
sometimes strange parasthesias

Yes, it can cause similar symptoms. Unfortunately there is no "test" for it. It's a diagnosis of exclusion

Customer: replied 2 day ago.
right. well back to stress reduction. maybe cognitive behavioral therapy.

CBT can be very helpful but you do have to work at it.

Customer: replied 2 day ago.
i have also had an unexplained polyclonal elevation of IgM antibody that was noted during all this intensive work up years ago. no one could explain it.
Customer: replied 2 day ago.
said incidental finding. monitored for years with fluctuating levels, never monoclonal. had bone-marrow biopsy was normal
Customer: replied 2 day ago.
i still get it checked every 6-12 months to be sure

Yes, just follow up with that. A negative BMB is a good thing.

Customer: replied 2 day ago.
thanks for your answers

You're welcome. Hope just talking about things also puts your mind at ease.

Jennifer and 8 other Medical Specialists are ready to help you
Customer: replied 2 day ago.
it helps. thank you