Advice on possible ALS - have read "read this first thread".

Mike12345

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Hi all,

I will start by saying that people replying and helping stressed posters like myself are truly amazing. Truely great people out there.

I'm 32 firefighter and have never been more scared.

I Began having general fatigue, exercise intolorence and balance issues (all which still exist) in September after a month away in Europe. A couple months later (December) I started having fasiculations. They commenced in the sole of my left foot as a buzzing. Then spread to both calves, quads, arms, hands, abdominals, and tongue.
Neurologist acknowledge fasiculations and had EMG mid January. EMG found fasiculations in many muscles, as well as "chronic neurogenic changes" in both thenar muscles under my thumb (worse on left). That being said the neuro didn't think they were significant enough, and I was given a diagnosis of likely BFS.

I got on with my life, however over the proceeding month I have noticed mass muscle atrophy. The atrophy is widespread but mostly in the sole of foot, calfes, hand muscle,.quads and face (more pronounced on left side). Basically everywhere that I'm twitching there is muscle wastage. Worse in the areas that have twitches longest. And it is significant. I workout alot and know my body well.

I returned to the nuerologist last week who agreed that I have had large muscle atrophy and has booked me in for another EMG test. (It's been 60 days since first one). Not sure if he is trying to keep me calm, but said he doesn't think it's ALS as I havent presented with clinical weakness yet, and atrophy shouldn't be first. He is thinking something else, but couldn't tell me what.

That being said I have read that it can happen in this order. Also I'm worried my EMG did have some "chronic neorgenic changes". That with the widespread atrophy (worse on left side), hand, face, legs etc. I know the EMG was mostly clear, but my body has wasted alot in the 60 days since.

Just seeking an opinion as it's hard waiting without any knowledge of what's to come.

Would've the first EMG picked up the atrophy first ? Are my symptoms presenting in an abnormal manner? Could it be ALS?

Thanks in advance.
 

affected

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If you read the 'read this first' post you would know the answer to your questions. It is worth reading it again, and then not searching and reading for other things online that will support what you want to hear. That post is our official position, so refer your questions in there, and this saves our terminally ill people from having to repeat over and over.

ALS is about failing - all the stuff you are presenting with are likely to be any number of other things. As you have been told, this is not how ALS presents.

Let us know the next EMG results, but truly that's all we can do because you need to continue working with doctors who can examine you physically. EMG's can't be done too early, again go read that post again as it should completely reassure you. If it doesn't, back to your doctor is the best response.
 

Mike12345

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Many thanks for your reply.
Just a quick question about the read this first post.
It does say "Atrophy, or muscle wasting, is a frequent early symptom of ALS"... So that's why I posted as I have this early symptom.

Should I be failing before this as well?

Thanks again Soo much.
 

Nikki J

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Yes in ALS atrophy generally follows failure / clinical weakness as your neurologist said.

I am going to edit that part as it is misleading
 

Mike12345

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Ok thanks Nikki.

Ive found this to be the case on many sites, and forums where it will say a list of first symptoms, or it will say "weakness, atrophy etc" not weakness AND or THEN atrophy.

So great to have that bit cleared.

Thanks again
 

affected

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I find however, that when someone reads a list and then goes 'oh I have one thing on the list' and start thinking they have ALS it is like saying I must have brain cancer because I have a headache.

Glad Nikki will edit, however the post does make it really clear that ALS is about FAILING. So if you grab a symptom, or even two from the list, but you are not failing to be able to do things, then it's like jumping from headache to cancer. Hope that helps too :)
 

Mike12345

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Yes that does help massively. Thank you Soo much for your time.
I will post an update once I've had my EMG. It's booked for next week.
I know I have something wrong with me, but feeling alot more optimistic.
Thanks again.
 

Mike12345

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Just a quick question. Obviously need to do my latest EMG in a few days but I have a question regarding my onset.
My nuerologist and others on this forum have stated that ALS doesn't start the way it has for me and that should reassure me. And further that it could be many things.
That being said, I have been doing alot of reading on this site and outside, and it does seem that many people have an onset exactly the same (many start asking if it's PMA). Further, everyone that I have followed through has ended with a diagnosis of ALS, and it seems to be alot (most younger like myself). Not one has had a different diagnosis that I have found.
I was curious what the other possible diagnosiss could be?? Atrophy is very scary, and it seems it only ends up being one thing if it is in multiple areas and that's ALS.
Are we just being assured it's not ALS to decrease our anxiety?
Is there a specific case which I could read which WAS something else?
I just have that feeling in my gut that I'm not going to be ok.
 

Nikki J

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We don’t have “ many” people who start as dihals and end up as PALS period. i have been here for a longtime ( I joined when my sister was diagnosed). I have read a lot of posts

we call it as we see it. I can’t remember names but certainly there are cases that turned out to be something else. In fact there are also cases where people’s reported diagnoses were rescinded. Always doublecheck their last posts. And quite frankly some people have lied or misled us.

if there is really nothing you can not do ? and you have zero clinical weakness or upper motor neuron signs on exam then you are not going to meet ALS criteria
if you have doctor confirmed true atrophy yes there is something wrong with you. What it is, we don’t know
 

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Please reread this list:


What It Was When It Was Not ALS
Most people on this subforum, when it is not ALS—and it usually is not—end up with BFS and/or anxiety but there are a lot of other diseases, neurological and not, that have led people here.
  • Chiari malformation
  • Myasthenia gravis
  • CIDP
  • MMN
  • Mitochondrial disease
  • Isaac's Syndrome/neuromyotonia
  • Charcot-Marie-Tooth
  • Multiple sclerosis
  • Guilllain Barre Syndrome
  • Heavy metal poisoning
  • Multiple Systems Atrophy
  • Medication reactions
  • Post viral syndrome
  • Lyme disease
  • Fibromyalgia
  • Cancers of various descriptions
  • Kennedy disease
  • Small fiber neuropathy
  • Parsonage-turner Syndrome
  • Spinal disorders including pinched nerves, lumbar stenosis, cervical stenosis
  • Thyroid disease
  • Diabetic neuropathy
  • Vitamin deficiencies
  • Vitamin toxicities
  • Painful legs moving toes
  • Pompe disease
  • Vasculitis
  • Systemic lupus
  • Sjögren’s syndrome
  • Other inflammatory arthritis
  • Rotator cuff dysfunction
  • Some of these are extremely serious. Only your health care team is going to be able to sort it out. Ask them what your symptoms could be and if you need any tests to find out. Let the doctor figure it out. On this forum, we can only tell you if your symptoms resemble our experience of ALS. If we say it does not, please don't continue to ask us. Go back to your physician with an open mind and let him/her figure it out!
 

Mike12345

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Thanks for getting back to me.
Sorry to clarify, I didn't mean many DIHALS progress to ALS, I meant all the ones I could find similar to me progressed to ALS.
I don't have clinical weakness no, however I cannot do a calf raise on my left foot, and I have weakness when I spread my fingers and try and resist against someone pushing them together.
I also have significant facial atrophy moreso on one side that has me extremely worried. Does atrophy in ALS really happen as quickly as a matter of 3 months ? From last week to this week I have lost muscle everywhere.

And thanks Karen for posting all those possibilities. I have been cleared of most of them, and not getting much back in way of those which cause mass and rapid muscle atrophy.

I have been told previosuly I had, anxiety, chronic fatigie syndrome, vestibular migraine, BFS... All of which my new nuerologist said are off the table due to the wasting.

I just find it hard trusting in the doctor's, when it seems they are struggling to find something themselves. Yes I know neurology is complex.

Thanks again for the assistance. I am 4 days away from my EMG, so will have to wait till then I suppose
 

Mike12345

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Sorry one last final question.. just going through an old NCS.
In reference to focal slowing of my ulnar nerve it states .." .. without associated focal conduction block, but with blunted left ulnar SNAP".

Just curious about the second part "blunted left ulnar SNAP" and what that means
 

Bestfriends14

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Dear Lord, if you are looking at an "old" NCS report, these are questions you need to be asking the neuro who conducted the testing, instead of ruminating and obsessing over a disease you do not show having, and continuing to question terminally ill folks and their caregivers. You don't have ALS symptoms and that's great news, so why are you continuing to ask questions?! Best to move on.


Good luck to you
 

Mike12345

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Im sorry to have offended. I am posting in the "could this be ALS forum" so thought it was the place to ask.
If I didn't have symptoms of this disease I wouldn't be asking questions.
Fasiculations, atrophy, mild weakness and chronic nuerological changes in multiple muscles.
I hope your right that I don't have ALS symptoms.

I won't post again till after my next set of tests.
 

lgelb

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SNAP=sensory nerve action potential. Sensory nerve damage, which is very common, may cause pain, numbness, and/or tingling. As a firefighter, your arms probably see a lot of use.

Widespread atrophy at onset isn't how ALS presents, let alone atrophy that isn't tracking with clinical weakness, and the rest of what you described seems like something different as well. Did you have a complete evaluation by an internist when this all began, or later?

Best,
Laurie
 
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