Terrified and concerned

[aheimann]

Ive been having fasciculations all over my body since the end of november. Had some feelings of weakness in my right arm and both legs since beginning of September. Had a neck mri done and has some bulging discs, retrolithisis, and spme stenosis of the spinal canal. Bulging disc in lower lumbar spine. Was referred ncs but no emg. Havent seen neuro yet as i was hoping the ncs wluld show everything i have was my discs being compressed or pinched. For the past week ive been having some issues with swallowing, as if there is something still in my throat. Usually happens with liquids. Today i ipened my mouth to look at my toungue while i was at work and had a manor panoc attack when i saw my uvula doesnt move at all. I was touching it and it was completely limp. Still had gag reflex though. Im so freaked out amd terrified. I keep thinking about my little children and my wife then having breakdowns. I believe this could be the start to bulbar ALS. Looking for some guidance. I respect all the PALS and CALS on this forum and dont mean any disrespect to anyone, just really scared

 

[KimT]

Usually slurring words is the start of bulbar ALS. Your uvula should only move when you're swallowing and it will seem limp if you touch it.

I understand you're scared, but I think you should take your concerns to your doctor. The amount of stress you're experiencing should be addressed so it doesn't affect your family life or your health.

Your feelings in your arm and legs can be signs of disc issues.

 

[lgelb]

I am sure the plan is for you to see a neuro if there is any suspicion of spine problems, so why not just go?

 

[aheimann]

Thank you so much for your reply. I saw an ER doctor and he did some quick strength tests and tested my reflexes. He said my strength was fine and my reflexes were just slightly brisk but still good. Was told that he didnt really see any reason to suspect any type of mnd was present as I have no slurring. I take these as reasons to be positive

 

[aheimann]

I would love to go to a neuro, but here we have to have a docotr give a refferal and then the health board looks it over and decides without seeing you if your refferal is accepted. Im going to talk to my gp and see what its going to take to get me in. I was having some swallowing issues and saw my gp. He said my tonsils and uvula were a bit red and he saw congestion so he gave me a medicated mouthwash ti take. He took a culture with a swab and i Gagged . He told me that was a good sign. Not really sure how. I have to pick up an anxiety prescription on tues hopefully that will settle my anxiety. Anywas, im going to try and push to see a neuro just based on my mri results and the other twitching and perceived weakness that happening

 

[lgelb]

He meant that a strong gag reflex means that the muscles in that part of the throat are functioning normally. I don't know how things work in Canada, but if you can't get to a neuro in a timely fashion, perhaps a physical rehab physician or a physical therapist?

At any rate, there is no reason for concern about ALS from what you have reported.

 

[Bestfriends14]

We live in Calgary and have had no such thing as having to have a health board look at whether a referral is acceptable or not. I'm not sure where you got that information, but it's dead wrong. You don't evidence ALS, so (my guess) your doctor would not refer you to a neuro needlessly.

In my husband's case, it was suspected he had ALS and was referred to South Health with a neuro appointment two weeks later.