New member with suspected MG
 

Hi, My PCP suspects that I have MG and wants me to see a neurologist. So I have 2 questions:

Any doc recommendations near Decatur, GA
What can I expect at my first neuro doc visit

I do have all the symptoms and sure hope that with the right Tx I can at least drive again.

Thanks so much!

Hi, Beegolden. Welcome to the forum!

I answered the doctor question on your other thread.

A good neurologist will do a thorough clinical exam, where they try to fatigue your eyelids, have you push against or pull their hands, and check your reflexes.

They would also run the MG antibody tests, both AChR (binding and modulating) and MuSK. They might do other tests such as a calcium channel blocker test, anti-striated antibody test, or other MG related tests.

They might suggest having a RNS, EMG, or Single Fiber EMG done.

If you receive a diagnosis of MG, they would probably do a chest CT to look at your thymus because some MG patients have hyperplasia (thymus that is larger than normal) or a thymoma (tumor of the thymus).

Hopefully, the doctor will listen very carefully to what symptoms you have as well! And try to reassure you and let you know exactly what he or she is thinking.

How are you doing? What symptoms do you have? Do you have any other questions for us?

Since you're in Georgia, please take it easy in the hot weather! MG gets much worse in the heat.

I hope you get some answers soon so that you can know for sure what's going on, have treatment for it, and adjust to living with a disease!

Annie

Thanks Annie (again)! I so appreciate your thorough reply.

First of all, I'm not worried about a possible Dx of MG. It would just be another label on my health conditions list and hopefully I'll get a Tx I can tolerate and that works. I've been a guinea pig with meds over the last 30 years and can't tolerate most of them, even NSAIDs.

My list of health Dx began in 1986 with Fibro and sero-negative RA. Since then the list has grown as I attempted to get relief from symptoms. The latest symptom which prevents me from driving is my right foot/leg doesn't always work the pedals. I thought it was my car but it checked out fine. When I mentioned this to my doctor this past week she immediately suspected MG. This same thing occurred back in 2001 but lasted a long time, finally resolving. I had to retire on disability at that time. It's odd that most of my life I advocated for people with disabilities, as well as supported their education and educated the public on disability issues, and now I'm on the other side of desk. Those experiences certainly have helped me during the last 14 years. Oh, just an fyi, I'm 63.

The list of Dx is too long to post here, but mostly they fall under auto-immune.
Current symptoms:
control eye and eyelid movement - blurred vision, ptosis, REM while awake
facial expression - droopy face
chewing - in afternoon
talking - "
swallowing - "
breathing - shortness of breath
neck - toriticollis
limb - poor dexterity, lifting, unstable gait, shuffling/waddling gait in am and pm, can't work car pedals
dry mouth and dry eyes
fatigue - several cat naps during the afternoon and then fall asleep by 6pm
hands and feet cramp
parasthesias and disasthesias
memory lapses
loss of balance, near syncope, dizziness, vertigo
Also I have a cyst growing between my collarbones. I thought it was part of the RA, but maybe it's the thymus?

Yes, heat does make things worse. Thank goodness for a/c, which helps some.

I don't know enough yet to ask more questions ;)

Again, thank you for your supportive reply!