Possible ALS 37 yrs old

[Kristinakc]

My neurologist said worst case scenario...ALS. I've been seeing doctors for years for an ongoing problem with my left arm. 2 yrs ago I developed bilateral bicep tendinitis. A year later frozen shoulder in right arm. Then numbness & tingling every night when I sleep. None of which are ALS symptoms. I've had multiple MRIs...all fine. Had an EMG in my arm 5 months ago. It was fine. I stopped pursing a diagnosis, decided to deal with numbness. That was until 7 weeks ago. Fasciculation were in right bicep for 4 days. Then the fascination spread throughout my entire body. They haven't stopped for 6 weeks, all over, more at night/rest. I also have internal vibrations. Neurologist said possible ALS, but she isn't sure. Referred me to a neuro-muscular specialist. Only thing is they can't see me for 4 1/2 months! I have had arm weakness the last few weeks...not debilitating. How fast would muscle go from fatigued/weak to obvious muscle loss? Anyone has a clean emg months prior to new symptoms, then retested and found to have als? I'm terrified, and have to wait 4 months for any type of answer. My Aunt died in 2013 from ALS.

 

[Lixen]

Nothing you've written even remotely suggests ALS and I question any neurologist who would toss it out there as a potential diagnosis.

 

[Nikki J]

4.5 months is tough. Call and ask about a cancellation list or if you can check back periodically. Find out which days are appointment days and call the afternoon before. See if there is another place you can go.

Having said all of that, I am sure you know one ALS relative does not equal FALS. Your symptoms do not really sound like ALS and a lot of general neuros can be pretty off track. Also if she really thinks this why not another emg?

Time to atrophy is variable AND disuse atrophy that has nothing to do with ALS is quite likely in this scenario

Good luck. I hope you can find answers soon

 

[Kristinakc]

Great advice on calling often to try and get in sooner , Thanks Nikki. I am waiting to hear back from Mayo clinic, they have similar wait times right now though. There are no other neuro-muscular specialists in KC. My neurologist said because she is unsure what my issue could be, other than the possibility of ALS, she doesn't feel comfortable administrating any more tests. I am very disappointed in this response. I may seek out another neurologist while I wait to see the specialist.

Hoping it is BFS.

 

[GregK]

Dr. Ringel at the University Hospital in Denver is one of the recognized regional experts.

But, fwiw, twitching is not a biggie as you can read in the post titled READ BEFORE POSTING (hint).

 

[FamilialALS?]

Kristina I'm sorry about your aunt. I lost mine the same year from ALS and then my mom in 2015 from ALS also. I too am surprised the neuro you saw would put out ALS out there like that. It is an indication you are in front of the wrong doctor.

I think you are on the right track to seek out a different neuro as you wait to see a neuromuscular specialist. The fact that you already had a clean EMG is on your side. Having a follow up one would hopefully put your mind at ease about ALS. As already stated I wouldn't put too much significance in the twitching absent muscles failing.

 

[Atsugi]

No other ALS specialists in the KC area? I don't believe that for a second.

Start at KU Med Center:

MDA/ALS CENTER AT THE UNIVERSITY OF KANSAS MEDICAL CENTER
(913) 859-0632
(913) 588-6965 Fax

Arthur Dick, M.D., Director
E-mail: [email protected]
39th and Rainbow Blvd.
Kansas City, KS 66103

 

[Kristinakc]

KU medical center is where my appointment is in mid January. I was referred to Arthur dick by my neurologist, but the center told me he only deals with muscular dystrophy now. I've found a few neurologists that list neuro-muscular as an interest, but not an actual specialist.

 

[Nikki J]

Dr Barohn seems to be the person at KUMC according to NEALS ALS consortium. If you can travel and insurance lets you. Washington University in St Louis

 

[lgelb]

Or, the U Missouri clinic in Columbia is 2nd closest, I think, if KUMC doesn't pan out/takes too long.

 

[Iona]

Hi Kristina,
I am so sorry to hear of all the loss you have suffered from this uncompromising disease. I have symptoms very similar to yours and I have not seen anyone else with symptoms that started out with shoulder pain and numbness and tingling during the night. I have a tremor sometimes too. These were my only symptoms for six months. I now have weakness in one arm and atrophy (recognised by my Neurologist) in that arm. I, too, am waiting on an EMG and results of blood tests. Six week wait for the EMG. It's v difficult.
Please let us know how you get on. Sending you every best wish for strength, hope and a good outcome.

Iona

 

[Iona]

Kristina,
I forgot to say that I do not have a diagnosis of ALS and my Neurologist has said he is confident that it is not a motor neuron disease, but running all the tests to confirm. I am scared, like you, but praying he is right.
Best wishes,
Iona

 

[lgelb]

Iona,
Please start and stay in your own thread at this time. If you'll read the stickies, you'll know why.

Best,
Laurie

 

[Iona]

Apologies, Laurie. I'm new to this. I have done so now.

Best wishes,

Iona

 

[Kristinakc]

Heading to the Mayor Clinic today. Couldn't wait any longer. The twitching has not subsidedone. Since my last post my right foot has been cramping, and I have pretty constant pain and twitching by my right Achilles tendon. Both thighs have been cramping as well.