Dealing with 5 months of random symptoms

[Beerleaguehocke]

Hi There,

first and foremost I respect and cant even fathom what those are going through with this disease and my heart breaks learning about it. I hate that im even posting on this forum, but after what I have delat with im just looking for some thoughts. anyone who has to deal with this my heart goes out to you.

This is a very quick summary and first I already have Rheumatiod arthritus.

July extreme head ache, thought i was having a stroke. Headaches continued for months.
Late october muscle twitches started in left arm.
Nov moved to all over body.
Nov went to emergency because I googled muscle twitching ( horrible idea ) ran CT scan clean blood work mostly normal other than RA expected things elevated
Nov extreme neck cramp, next day and still on going tongue feels wierd, burned tingly, neck twitches, throat sensation like globus. and "weakness" pulled muscle tired feeling in tongue and throat
Nov more wierd symptons continue i was freaking out went to emerg again, they ordered MRI of my head, clean spoke with doctors and mine, more blood work, everyone says normal
Nov twitches are pretty frequest and hit sometimes hard all over
Dec face weakness after chewing near christmas, face got so tired. couple days returned to normal havent had again
Dec another emerg visit with lots of twitching more blood work nothing out of ordinary. Tongue and throat are worst symptoms but no trouble swalling just off feelings of tired, pulled muscles tingly, burning
January first onset of "weakness" thighs are super sore at knees and lower thighs, cant even get out of a chair, both sides. lasts 3 days or so strength returns.
later january happens again. very accute lasts only day
Jan another one in left arm, sharp pains pinching my arm, no strength. It has no disapated
Feb and current, I still have the thraot and tongue issues and the thigh weakness has come and gone again. I went to emergency dr says its a connective tissue disaorder gives me prednisone, symptoms sort of calm down and late come back cant get out of a chair again. to this day the weakness and pain comes and goes to the point i cant walk then strength comes back after anti inflammatory drugs.
Saw Rheum today and she says not RA or connective tissue disease need to see the Neuro and here i am.

again I apologize to anyone who thinks this is craziness but ever since the twitching my googling has come back terrible.
I am waiting for my neuro appoinment which is months away.

Thank you for your time. I apologize for anything not appropriate here.

thank you

 

[ShiftKicker]

Hiya-

Make sure to read this post: Read Before Posting for reasons why your experience is not how ALS starts. While you must be very worried, much of what you post is not at all associated with ALS and points in a different direction. The fact that docs have provided some answers and a treatment that has worked (moderately), that your symptoms come and go and that much of what you report is sensory means you can knock ALS off your list of things to worry about. Have a read of the link for more detailed info though- I think it'll reassure you re: ALS. Sounds like you have a bit of a search still, but you're seeing the right people.

Take care

 

[Beerleaguehocke]

Thank you very much for the reply, and I will read the link. much appreciated.

 

[lgelb]

I would ask about a referral to an infectious disease specialist but agree that this doesn't sound like ALS at all.