Possible ALS after Guillian Barré?

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KevonLem

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Hi everyone. First id like to say how amazing everyone is on this forum. It is clear there a lot of knowledge/mental capital here. I truly appreciate the willingness to help those who may or may not have ALS with your experience and intelligence. So here's my story. On Jan 10th I broke out on my palms with a painful itchy rash, possibly enterovirus (known for ALS assoc.) This resolved after 6 days. I had Guillian Barré syndrome Apr 2019. I'll explain why this is material later. On Jan 17th I began getting fasciculations in my right calf subsequently spreading to quads, hams, triceps, forearms, butt, face and lats. Most fasciculations occur in calf's and quads. I also felt cramps at my rear abdomen wall and shoulder blades at night. At the same time I experienced weakness and a feeling of easy fatigue from shoulders to my fingers. My weakness and at times feeling of tightness in my muscles. During my GBS I had experienced similar but far more rapid arm weakness and fatigue. I am going to see a neurologist soon and getting an LP tomorrow. I was curious if anyone thinks this could be flail arm variant of ALS and whether these symptoms match with any ALS progression. Thanks in advance.

I also forgot to mention that my coordination/balance suddenly got worse.
 

lgelb

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It's much more likely it's sequelae of the GBS, or a new virus or bacterial infection. I would get blood drawn before seeing a neuro.

Flail arm doesn't present as you described. Nor does it line up with any ALS variant.

Best,
Laurie
 

KevonLem

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What type of blood test would you suggest I ask about?

Update: Fascics continue with small cramps in hands, foot arches, shins, rib cage. Feeling of labored swallowing and weaker stiff neck muscles at the back of my neck. Cervical MRI was clean, and doctor performed EMG to determine if GBS recurrent which didn't show abnormalities beyond fasciculations. They tested large muscles only on my right side and my thumb muscle in my right palm. He doubts ALS but diffuse rapid fasciculations are odd for benign conditions. I have a follow up with another neuro in 8 days. I'm definitely having some increased anxiety due to the lack of answers. I have largely been in bed because of fatigue and feelings of balance and coordination loss. Thanks in advance for any replies.
 

lgelb

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CBC, CRP, ESR, PCT, electrolyte panel

I would disagree that diffuse rapid fascics are "odd for benign conditions." It is worth looking for triggers from caffeine and alcohol to rx medications.

I really don't think you have ALS.
 

KevonLem

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I feel as though it is harder to speak and my tongue, jaw feel exhausted. Fasciculations have now moved to my tongue, jaw, lips,neck, and even scalp. I'm terrified. Thank you for your reply. I did several labs

Creatinine Kinase - 141
SED rt - 9
Mg - 2.1
Phosphate - 4.1
TSH 1.7 (this increased from 1.2 2 weeks prior)
Folate 14.8
B12 - 400
Methylmalonic acid - 0.22
CRP - 5.3
CBC counts we're all normal.
 

lgelb

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Some of these are lab/age-dependent, but there are a couple of values like the phosphorus that might suggest discussion with your internist, and some, like calcium and a kidney panel, that I would think s/he would want to see if there are not recent results. Once again, there is no reason to think of ALS.
 

KevonLem

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The reason I consider ALS so strongly, besides the obvious seriousness of ALS, is the sudden onset of fascics that became widespread over a 2-3 week period, loss of coordination, and as of the last few days muscle tightness and cramps/spasms, general fatigue. The research I have seen indicates that cramp fasciculation syndrome is a mimic of ALS and that some go on to develop ALS. There's a girl on youtube who had cramps and fasciculations before any weakness. I'm not going to post her page, in case this violates the rules but I'd be happy to share since it is public. The questions that I feel are unanswered for me, is whether cramps and fasciculation have a different pattern, rate of progression than what I'm experiencing, how long it generally takes to show both LMN and UMN signs, with Guillian Barré my reflexes are absent so does this hinder UMN lesion detection? This courageous woman on youtube checks a lot of my boxes, including age proximity. This has certainly kept me up at night. Neuro appointment is the 25th and hopefully a road to answers. Thank you for your reply.

 

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You have misinterpreted pretty much everything you've read. BFS is thousands of times more common than ALS. It's like saying, some headaches turn out to reflect brain tumors, so when I have a headache, I'll assume it's a tumor even if imaging says it's not. Seriously, you regard personal stories on YouTube as better evidence than the thousands of people here, scientific papers, and your own test results? I'm not going to feed your unfounded fears with attempts to sweep all the ALS cases in the world into a cheat sheet, enable your theories that you are "progressing," etc. It's all on PubMed if you want a higher quality of evidence.

As to the paper you linked, it makes the same point -- fascics in ALS are different than benign fascics. You don't have any features of ALS so how those differ is completely moot.

We've opined that you don't have ALS. An EMG and exams agree. Chase it if you want -- it's your life that you're wasting. However, P/CALS don't have that kind of time. Therefore, please don't post again until after your neuro appointment on the 25th.
 
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