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Aaronmandevill

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I am currently active duty Air Force male 36 with a history of lymphoma (5 years remission). I received several different cerebral chemo therapies. Middle of last year I went in for difficulty swallowing pills and saliva. They did an endoscopy and found nothing, but I did fail the barium pill swallow test. March of this year I noticed fasciculation in my calves which have increased in intensity to the point of causing trouble with sleep. They have also moved to my feet and thighs. With my history they did full blood (all levels good) and brain mri (all good). I am currently scheduled for c-spine mri and EMG, but they are 6 weeks out on appointments. Also my neurologist told me that he would never diagnose ALS without muscle weakness. I have heard starting medication early can really help in disease progression. It’s hard to get a second opinion working through military channels. Would it be worth it to get a second opinion from an ALS specialist out of pocket? They range about $500 for a consultation.

I am very grateful for this community and many things I have read on here have already lowered my anxiety on a number of unknowns I had concerns about, so thank you so much in advance.
 

Nikki J

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I would wait for the emg and mri. 6 weeks isn’t that long. One of the specialists the Oxford MND center has said he wouldn’t even do an emg without weakness let alone diagnose it. If your swallow issue started a year ago and has not progressed that would be highly atypical for bulbar nor are pills usually the first issue
 

Aaronmandevill

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Thank you for the reply Nikki, it does seem many clinics are several months out for a second opinion so this may be my best bet. Are EMGs pretty good for diagnosing ALS?
 
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affected

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It might really help to have a good read here, as it should answer most of your questions while you wait for the EMG and other tests.

ALS is diagnosed by a combination of clinical examination and EMG, which sounds like what your neurologist was saying.
You really don't need a second opinion until you have completed the needed tests and exams the first time around. I hope you can concentrate on living life and doing all you can for general health in the meantime. 6 weeks really isn't long to wait, especially when you are looking at problems that began a year ago without progressing at all.

Please let us know how you go.
 

Aaronmandevill

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Appreciate the post guru, the swallowing not progressing definitely makes me feel better and I have read the “read here first” as well as a lot of medical research on the disease. I saw somewhere that fasciculations first presents as the only symptom in something like 7% of cases initially. The fact that the fasciculations are persistent and progressive is my main concern.

As is it seems doctors and PALS seem to agree more about enjoying life than aggressively seeking diagnosis. My plan was just to schedule some vacations with family in the time being so as to not regret my time while mobile.

My PCM has given me Valium which calms the fasciculations but I know that isn’t something I can take long term.

I’m still keeping up on my running and strength training. Also trying to regain some weight as I think I’m a bit too low at 140 for 5’9”
 

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The healthiest weight is where you function best -- I wouldn't worry about regaining weight based on an arbitrary BMI, which does not take conditioning and lifestyle into account.

Thousands of people have stopped by here with "persistent" fascics and very few had ALS, especially without motor impairment, so I would expect the EMG to be reassuring. I would try some Mg lotion on hot spots and some tinkering with diet/stretching, ahead of Valium.

There are post-chemo syndromes even years later, that bloods, etc. can't always detect.

Best,
Laurie
 

Aaronmandevill

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Thanks for the comment about the healthy weight. I feel my best around 140-145 but my mom saw something about low bmi and pushing myself too hard with exercise increasing odds of als.

And thanks for the reassurance about the statistics, for some reason I thought EMG isn’t very good but the more I read on here the more it sounds like I can look forward to the results from it.

I’d definitely like to not be stuck on Valium again, withdrawals suck and right now even after 5 days on it if I don’t take it the fasciculations are much stronger.
 

Nikki J

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Re the fasciculations the groups that are known to have fasciculations ahead of weakness are carriers of certain ALS mutations and men over 50 The latter group generally gets other symptoms especially weakness fairly soon after - not a year or more. Anyway neither category is you.
It is also important to realize even in the above categories twitch first ALS is very rare and usually it is a short time to clinical weakness and other exam abnormalities. If you are a 50 yo male do not decide your twitch is ALS because it probably isn’t.

exercise- there was a study last year that caused a lot of discussion. There seemed to be a correlation between any exercise at alll historically and earlier onset in people with the FALS mutation C9orf72. Again not you and the authors backtracked a bit when asked about this by the C9 community - they did not advise even c9 carriers to change exercise patterns. I think there is a study somewhere that has PALS being lower bmi than nonPALS but even if true you are not going to change whatever is already happening by gaining a few pounds.

in the unlikely event you do have ALS diet and exercise would be revisited but right now live your best life for what if comfortable for your body now
 
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Aaronmandevill

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Thanks for the reply Nikki. I’ll keep doing my best to focus on the positive. I wrote on my whiteboard, “I don’t have any weakness today.” Right now I made an arrangement with my family that if my fasciculations increase and don’t stop for another 30 days then we will plan a trip to Europe. I will also be seeing a psychiatrist on Wednesday. Is it alright if I leave this thread open to post after EMG etc?
 

Nikki J

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Certainly post back when you have results. Threads close automatically after a time from disuse. If this does please open a new thread and add a link to this one in your post.
plan a trip anyway! So many of us go through life delaying things because you don’t have time or money. Unless you really really don’t it is best not to delay
 

Aaronmandevill

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Thanks so much for that! It’s kind of how I looked at it was I have the time off and the savings so why not just do something like that sooner rather than potentially miss out on it
 

Nikki J

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Yes the relevant ALS mutations are autosomal dominant and highly penetrant. They know they have ALS in the family. Even they usually have weakness first but a few twitch for a while. Again mostly a few months not a year like you.
I will add some carrier twitches aren’t ALS either. I know one who twitched a lot was very worried but saw an ALS specialist had emg got cleared and cleaned up their diet and started stress management. A year later still fine and no twitches.

the older men generally seem to have weakness in a few months and often they have it on their first proper neurologic exam but didn’t know it. My point was the 7 percent you dug up somewhere was presumably made up of people who are inherently different than you. That you take the explanation as something to worry about rather than to reassure you says you are viweing this in an anxious manner not a reasoning calm one

it is pointless to worry about twitching Something like 80 percent of the population twitch at some period of their lives.
 

Aaronmandevill

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Nikki thanks for your replies, I know you try to calm lots of peoples nerves and for that I appreciate you. I will say with the swallowing not progressing it was mostly due to my family being concerned with how much I coughed after eating. I wasn’t really concerned at the time and don’t think it’s related to current issues.

The fasciculations have increased in intensity over the past 45 days to the point of making it very difficult to sleep. I know that time will tell and I could just wait and see, but then I see stories about how starting radicava or riluzole makes a big difference in terms of slowing down progression. This is what made me wonder if I should more aggressively seek alternate opinion or a faster EMG. Wish I could just start riluzole while we do all these tests, since it sounds well managed.
 

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I'm so glad Nikki has helped your concern about the swallowing. Twitching by any name means nothing, no matter how intense.
Radicava and riluzole are high level drugs that are not to just be taken 'in case' you have something you don't truly have symptoms of.
Please stop trying to be smarter than your doctors, just allow them to work through the diagnosis process the way they have been trained to do.

In the meantime you are better off looking at your diet, stress levels, sleep, repetitive tasks, exercise and relaxation activities. That could make a huge difference and change in your life regardless of any diagnosis you end up with.

Please do let us know once you have a diagnosis. We are obviously unable to reassure you, so you need to talk this through with your doctor.
 
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