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markp99

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2 prior EMGs (Nov & Dec) with neurologist #1 noted chronic denervation, resulting in a "Possible ALS" diagnosis. First EMG (Aug) did not show any issues. Dr #1 was clear that lack of muscle weakness/atrophy after 9 mos of continuous fasciculations and cramping was encouraging. Next EMG in 3 mos. Dr #1 did agree a 2nd opinion might be valuable to account for any bias on his part..

Yesterday we visited Mass General's ALS clinic for a new patient consult. Drs #2 & #3 at MGH were more positive to exclude ALS based on their diagnoses - agreeing with Dr #1's initial Aug diagnosis of BFS/CFS, especially in light of no muscle weakness.

I do not show a typical ALS progression of symptoms. They did caveat with the note that a very very small non-zero number of patients will contract ALS even after 9mo or longer with BFS/CFS. They suggested another visit in 6mo.

They are still curious to further explore the fasciculations and cramping and ordered another EMG to be conducted in their lab at MGH, as well as additional blood testing - paraneoplastic evaluation panel to assess for possible antibody issues.

They did also note a potential prescription of Mexiletine (heart med) to address continuous twitching and cramping; holding off on that for now.

Hoping to to formally strike the "Possible ALS" diagnosis from my medical records!
 

lgelb

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That's great news. Just to clarify for others, with ALS we would expect to see both acute and chronic denervation, and in multiple areas, on EMG.

Here's hoping BFS/CFS continues as your dx.

Best,
Laurie
 

markp99

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Went to MGH today for my 4th EMG and new blood work.

A little history:

1. May 01 - Continuous bodywide fasciculations and cramping commence, but no weakness

2. Jul 27 - EMG #1 Clean, BFS diagnosed

3. Nov 09 - EMG #2 Chronic denervation observed, "Possible ALS" diagnosed as a placeholder, re-test in 1 month

4. Dec 31 - EMG #3 Chronic denervation observed again, but now beginning to point away from ALS due to any notable lack of weakness, 2nd opinion recommended

5. Jan 22 - MGH ALS Patient Consult - Neuro exam performed, symptoms do not suggest ALS (i.e., duration of Fascics without progression of weakness), rather BFS/CFS suspected, another EMG in their lab was suggested as well as new blood work not yet performed.

6. Feb 06 - MGH EMG #4 was CLEAN (!), blood work CPK = 167 (normal), Paraneoplastic antibody evaluation - 7~14 days for results to return.

Today's EMG at MGH was performed by a younger fellow and monitored by an attending physician. They did the normal EMG tests I am now well accustomed to but added some additional conductivity tests along some CFS protocol. Thankfully, Dr David (EMG Lab Director) was available in the lab today to read my results and relay his findings on the spot. Nothing from my neuro exam(s) and today's EMG points to ALS. He was quite confident and adamant in this diagnosis.

One aspect of my EMG/CFS result did seem to peak his interest. He flipped on the EMG monitor to show me what he called an interesting result. He showed me normal/clean wave forms, then showed me mine. After the expected large spike and recovery there was noise (looked like electrical bounces) in the subsequent trailing waveform. He said this points to exactly the hyper-excitability the paraneoplastic blood test is looking for. Further, he noted this effect not not present in ALS cases.

He is confident we are on the right track with the paraneoplastic evaluation, hoping it will direct him toward an effective treatment for my non-stop fasciculations and cramping.

I walked away from today's exam feeling just a bit lighter. Nice to get further confirmation and a little direction toward treatment.

Thanks for reading, as well as the valuable advice/support provided in these forums. I am certainly much more informed on ALS than I was just a few months ago.

mark
 
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ShiftKicker

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Mark, thank you so much for returning to report what you have learned so far. We've had a few people come back to report what their eventual diagnoses were recently and the results have been unusual ones. Not the kind of mystery you really want to find yourself participating in, and my hopes are that when you get some firm answers you can really start working on mitigating symptoms and recovering your normal activities and function. Sounds like you are in excellent and knowledgeable hands.
 

markp99

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One last quick note:

Paraneoplastic Antibody Evaluation just came today back fully negative. Neurologist called to discuss and was confident in his diagnosis of "Benign Cramp Fasciculation Syndrome". Nothing more to do at this point but manage symptoms. No need even for further follow-ups with him, unless I notice any changes or symptoms become overly bothersome. I'm good to go and fully trust his judgement!

He did once more mention Mexilitine as a possible option to help manage the cramping and, to a lesser degree, the 24x7 Fasciculations. Still holding off on any long term regimen like this.

Thanks for the valuable information and assurances provided by the people of this forum. Best wishes.
 

lgelb

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Happy to hear no cancer, no ALS, Mark. Your story will help others, I'm sure. All the best.

--Laurie
 

Lkaibel

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Wonderful news! Long and happy life to you.
 
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