Necessary?

[Nikki J]

From the read before posting sticky
Do not contact PALS/CALS/ former CALS directly via private message or visitor message. It is generally felt to be an intrusion when a message is sent by an undiagnosed visitor. If someone has answered you on your thread please if you feel the need for follow up questions ask them there on the thread.

you may contact other undiagnosed members if you wish

 

[Second Opinion]

Thanks for the clarity, Nikki.
Diagnostic limbo is beyond exhausting.
I have so many questions, and the waiting is the worst part.

Thanks again, for all your help.

 

[Nikki J]

Agree limbo is no fun. I believe your appointments are fairly soon. Honestly it is best to spend your time enjoying family friends and summer. Speculating and wondering if is very stressful and won’t change anything

 

[Second Opinion]

You are indeed correct!
The outcome will be what it will be, and I cannot change it.
I think it is the not knowing, and having so many unanswered questions, that is the hardest part.

I am/will do my best to stay present, and enjoy each day, as it comes.

 

[KimT]

Feel free to contact me via email (sent via pm- mod)
This email address is reserved for answering questions and communicating with other people going through the diagnosis process.

Someone gave me their email address before I knew what was going on and he helped me a great deal.

 

[Second Opinion]

Just wanted to give an update-
My EMG is scheduled for next week, the 19th.
I am anxious to get this behind me, so I can move forward, whatever that entails.

My symptoms have continued to progress, unfortunately. My speech is becoming more difficult. I find myself not wanting to talk, because I cannot stand to hear myself slurring or mispronouncing my words.
As always catarrh is awful! Nothing helps! Allergy, mucinex, you name it, I have tried to no avail.
Teeth grinding at night has become a ritual. I have tried multiple mouth guards, but none seem to be helping. I am waking with sore teeth, and then though out the day I am having these attacks of an extremely painful ear, jaw and teeth.
I am beyond sensitive to noise, and scared of my own shadow- that startle reflex is something, I tell ya!
With all of that being said, I am trying to stay positive and adapt a different outlook on life, in general.
I have so many questions and truly need some support. I am hoping for a different outcome, but I am anxious to be able to post and communicate.

 

[Nikki J]

I am sorry you are having so many issues. I wonder if a muscle relaxer would help the grinding? Perhaps ask your doctor? Hoping for the best for you. Do let us know. Will think of you on 7/19

 

[Second Opinion]

Thank you, Nikki.

 

[Second Opinion]

I had a question, I forgot to ask- it may seem silly, for sure.
I am having two teeth pulled on Friday.
My EMG is Tuesday. With my symptoms being bulbar, it’s obvious that is where they are focusing. Can having dental work done so close to the EMG, hinder anything?
Also, you read all sorts of crazy stories- can dental work and or trauma contribute to progression?
Of course all of this runs through my mind, rational or not.

Thanks, Leslie

 

[Nikki J]

Not silly. you might want to check with your neuro. I don’t think it should affect it because pulling teeth shouldn’t affect the bulbar muscles but I know that some procedures can affect results. When I had my abnormal emg she wanted to check the paraspinal muscles for more confirmation but said my lp the day before would interfere with interpretation

dental health is important and you should keep up with it certainly. Stress and trauma can have a negative effect on the body of course. In other words do not cancel and only reschedule if your neuro tells you to

 

[Second Opinion]

Thanks, Nikki.
I am feeling damned if I do, damned if I don’t.
If I don’t, I am still having so much nerve pain currently, from the teeth that need be pulled and my night grinding- will that show?!
And if I do have them removed, will any trauma or nerve damage, also show?!
I am torn on what to do.
My neuro wasnt concerned but that was weeks ago. I had to cancel the first appointment, as I was not feeling well. With it now being so close to my EMG, not sure if that’s a game changer.
Ugh! I am tempted to wait until after the EMG, but I am in so much pain.

 

[Nikki J]

If your neuro knows the timing and said it was fine then trust her. If she didn’t address this specific question call. None of us are electrophysiologists and we can’t see you. The emg is an important test for you. Get a definitive answer from the doctor who knows your situation

 

[Second Opinion]

Tomorrow is my EMG.
I am not nearly as anxious, as I was with my previous two.
I didn’t realize until recently my neurologist was not performing the EMG. She is currently booked out far, and wanted me in ASAP- I am seeing one of her colleagues. She did state, she was gong to try and ‘pop in’.
She noted ‘concentration on the bulbar area.’
I did not think of it at the time, but is it feasible to assume, they will only move on to other areas, if my bulbar area shows something?

 

[Nikki J]

Not necessarily. it is quite common to sample muscles in several areas. don’t try to read anything into what happens. Wait to be told. Good luck

 

[Second Opinion]

Thanks, Nikki- I’ll report back, tomorrow.