Not too concerned, should I be?

[Silverwings87]

Hey, just wanted to get your opinion, I'm not too concerned, guessing my issue us probably just bfs or autoimmune, but just wanted to see.

I've had muscle fatigue for a while. This spring my primary doctor said I do have some weakness, 4 out of 5. Ive had random twitching since last year started on my eye, then my nose, then around my cheeks and lips, then hands, feet, then all over. Not too worried about it.

I noticed 6 weeks ago or so my tounge felt thick or heavy. I was worried about an allgery and swollen tounge. So I looked in the mirror, and saw it was twitching all over the place. So I made an appointment with my primary doctor, and he diagnosed it as fasciculations. he said with my other symptoms it's probably not benign. I've had no problems swallowing i do you have some problems with saying words that have t or things like that in them. Ive had some hypersalavating, I guessing heartburn? the only other thing is I've noticed I bite my tongue awful lot.

at my next neuro visit I showed him up what's going on and he seemed slightly puzzle. He is sending me to a neuro muscular doctor who has a specialiy in ALS. neither one of my doctors have mentioned ALS, but I talked to a nurse who mentioned it. I have had an emg of my wrist which was normal, but my neuro said I may need another.

Your thoughts? My next visit with the specialist in thee weeks.

 

[Atsugi]

My thoughts?
Could be hundreds of things, frankly.
Doesn't sound like ALS, so I wouldn't worry about having a terminal disease.
Relax and keep your appointment.

At the risk of pissing off a lot of nurses, I have to say the nurse who mentioned ALS was way out of line. Nurses are not trained AT ALL in the intricacies of diagnosing illness, and should mind their own business, which is nursing patients and assisting the experts.

 

[affected]

Try to relax until you see this ALS specialist. It's good you are being referred there straight away so that you know you are being checked by someone who knows their stuff.

It could still be benign, or many things other than ALS, so you are right not to be too concerned at this point, just get all bases checked.

The mouth symptoms you describe were all experienced by my husband in his early stages, except that he had quite a few other obvious symptoms then as well. Many of the early ALS symptoms are shared with many other diseases, so these early vague symptoms are not enough to say anything bad is happening one way or the other.

Try to stay away from the net, and even here until you get a thorough check by an ALS specialist.

All the best

 

[veggiepete]

Easier said than done this 'try not to worry' thing...but it doesn't help...neurologists are known for not knowing, and often say return in three months....their diagnosis are often worked out by progression....nearly two years in i've no firm diagnosed....what will be will be, but not living in the meantime is a waste...

 

[JamesB]

But veggiepete, does the fact that you have no clear diagnosis or dramatic progression for two years not immediately rule out certain conditions - like ALS?

 

[veggiepete]

i have had a lmn mnd diagnosed for nearly a year, ....but yes the slow progression has made the second neuro think i may have mmn instead..have had ivig to see if it helps .If it doesn't then he will lean more towards a mnd (pma)diagnosed..guess what i'm saying is progression can aid a diagnosis...this all takes time and worrying too much in the meantime isn't good...

 

[JamesB]

No it doesn't help to worry, but it's hard not to if you're constantly reminded by your body that things aren't well. Excuse my ignorance but what's mmn?
J

 

[veggiepete]

.no worries James..and i know that feeling..it stands for multifocal motor neuropathy..there is a section on it here...which is an immume caused neuropathy..treatable with ivig every few weeks...had first ivig a few weeks ago and a rash on my hands and feet the only noticeable effect...

 

[JamesB]

Oh right. I should look into that. I'm awaiting diagnosis.

 

[Silverwings87]

Thanks for your replies, I'm still not too concerned and hoping for the best, I am however concerned that I'm 27 and thinking about having to quit my career and find something less demanding. Whatever's going on that sucks. As I'm sure so many of you can relate. My latest along with muscle fatigue or feeling weak and both my arms and legs my tongue towards the end of the day feels really weak or strained almost to the point where it starts to hurt. Has anybody heard of anything that has symptoms related to that? I have been tested for MG. Was neg.

 

[Dusty7]

Silverwings,
Your symptoms are fairly ambiguous at this time. Follow up with the neuro. If he is concerned, he will do a multi-limb EMG and then you will have more information.
I wouldn't be overly concerned at this point.

 

[Silverwings87]

like I said I am not overly concerned, I'm just trying to get more information.