Originally Posted by HDJJ

Hi all, Sorry this is a long post but I need some help from you:

Please provide an objective opinion on what this could be. I have autoimmune diseases and other diseases/syndromes but my question is only about my neurological symptoms.

Sero-negative on all labs for MG, including musk. MRI brain/eye orbit negative, CT thymus negative, NCV negative, EMG revealed fasciculations only, 2 GI studies revealed oropharyngeal neuromuscular weakness and an aberrant right subclavian artery. CK was 2400 in Sep 2013 but went down to normal on subsequent tests. Aldolase was normal fall of 2013. Electrolyte panel and all vitamin/mineral lab tests are always normal (tested multiple times per year when I have my thyroid and kidney & liver labs).

Symptoms:
Dysphagia liquid and solid
Shortness of breath/cant get enough air in
Feels like worms in chest
Fasciculations in feet 24/7 since March 2013
Paresthesia in legs and right side of my face
Severe foot cramps and pain (cramp can last an hour or two)
Hand cramps and pain
Cramps on sides of head above ears
Sporadic twitches all over
Tremors and vibrations
Rash on chest since March 2013
Eye weakness, ptosis, diplopia
Thigh and shoulder weakness
Neck weakness (back and sides)
Chilblains
Cognitive difficulty (SLP says "deficit in executive function")
Hair loss since June 2013 (telogen effluvium per dermatologist)

I am on the following meds: Baclofen 20 mg day, Mestinon 90+ mg day, Synthroid 100 mcg day, Cytomel 20 mcg day, Bupropion 300 mg day, Famotidine 80 mg day, Hydroxyzine 10 mg or less per day, Pro-air, Ocella and Nitro-bid. I take multivitamins, vit C, BCAA's, L-glutamine, Cinnulin PF, Jarrow EPS, Halo. I have been on all RX meds for over a decade except the Mestinon was started in 2012 and Baclofen last summer. No caffeine. No alcohol, drugs or smoking.

These symptoms have presented over the past 72 months and I've been treated by a Neurologist since Nov 2011. She was treating me as sero-negative MG but since the spasms and cramping started a year ago, she really thinks it's something else but cannot tell me what it is. I tell her that my Vascular Surgeon says it's MG causing the dysphagia, the Radiologist who did the GI's told me it's neuromuscular oro-pharyngeal weakness and showed me the video of the study I saw the left side is not coordinated with the right, causing dysphagia. The neuro still says it cannot be MG because I do not have "profound" symptoms when she evaluates me a few times each year and the labs are always negative.
She says she is only giving me Mestinon because I say it helps me.

I can tell you the spasms did not go away when I stopped Mestinon for 30 days before the EMG last summer. Yesterday the neuro told me to try stopping Mestinon again to see if the spasms/cramping stops. I am very mad because I've already done this for her and it proved the medication was not the cause. I do not want to have a crisis (breathing). Although the breathing issues do not happen too often, I can control it by taking 30-60 mg Mestinon when it starts acting up and in 15-20 minutes it usually goes away. The neuro says that Mestinon helps anyone that takes it so just because it helps me does not mean I have MG.

People with MG, don't your symptoms wax and wane like mine? Aren't they always different in severity? Don't you feel ok for a few days and then have a bad day or two?

That is how I experience my symptoms. Every day is different. I may have 4 or 5 good days then 1 to 3 bad days then back to good. It just goes back and forth always. The spasms are always there 24/7 (feet). The cramping in feet is worse after a day at work. The right foot has more spasms than the left. The left foot has more severe cramps that last hours and hurt beyond belief. The cramp is in the arch from the heel to big toe. It makes my foot feel bruised the next day and it happens a couple times a week. I have normal foot cramps in both feet daily and the toes move around in all directions on their own. They start when I am active or just sitting on the recliner. I get daily cramping in my hands and fingers - painful. I have to stop using my hands for a while to fix it.

Sorry for the long post but I am beyond upset with my neuro for putting me through all this. I need you, a person who's had MG for at least 3-5 years to tell me what you think.

Thank you.