10 Years After Diagnosis...

By edbrunk68

1 min read

I was diagnosed with gMG in 2013.

Medication side effects

I was given Prednisone which gave me thoughts of suicide. I was also given Mestinon which has left me with constant muscle fasciculations and shock-like sensations. I can barely walk without the use of 2 canes and when needed, a power wheelchair. I have extreme fatigue and weakness all over.

Daily struggles

As soon as I get out of bed my muscles are fatigued, I now have trouble just walking a few steps in my home. The most simple tasks have become almost impossible - like cooking, changing bedclothes, and folding laundry.

I am 69, male. Nothing can be done to increase or build up strength, as soon as I move fatigue sets in with my muscles. I have even stopped breathing once at the end of surgery and also woke up once choking on my saliva and phlegm.

Not just MG

I have other issues including TIA's, heart attacks, and now cerebral atrophy, and an indication of beginning dementia or Alzheimers.

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edbrunk68 Member
only meds at first were prednisone and mestinon, both were horrible and have not taken anything since 2014. progressively worse each day it seems. have had 5 heart attacks and heart surgery since 2014. have peripheral neuropathy head to toe, with numbness, itching stabbing pain. have had gastroparesis with several attacks requiring hospital stays. had gall bladder removed 2 years ago. had an episode of ketoacidosis requiring 24 hour insulin drip in ICU last June. having some kind of attack or episode in the left side of my face resulting in temporary numbness, headache and weakness. no known cause despite x-ray, MRI, ct scan, EEG. waiting on appt. with neurologist in May. have had several TIA's. not many neurologists in my area. have seen I think 6 including a week's stay at Mayo Clinic in Minnesota. all but 1 dismiss the grMG diagnosis, not really sure but seem to have something in addition to grMG. Inclusion Body Myositis seems to fit better than grMG. I guess it doesn't really matter.
1. edbrunk68 Member
 <inline-mention username="edbrunk68" user-id="4152846"/> thanks for the comments. I have not tried any other treatment or should say have not been offered any other treatment. The neuro doc that made the diagnosis gave up on me and said that I may have a type that he has never seen before. He is supposedly the top MG neurologist in the area. I have had x-rays, MRI's, EEG, CT scans stress tests and I am sure other tests as well but no reason for the stroke symptoms. There is stenosis in my carotid artery but am told it is not bad enough to be causing these symptoms. My cardiologist thinks it is neurological related. The last 2 attacks have been like a combo of heart attack and stroke symptoms. I was told during my last lengthy hospital stay that my heart is functioning better than 5 years ago. I see my new neurologist May 5. I have been to 5 neurologists in the area plus a week at Mayo Clinic in Minnesota and no other diagnosis has been made. The muscle wasting in my legs and arms is similar with symptoms of Inclusion Body Myositis as well as the trouble swallowing and chewing. As far as yoga, any movement makes me worse.
2. Jodi Enders Moderator & Contributor
 <inline-mention username="edbrunk68" user-id="4152846"/> Even with the neurologist who diagnosed you having good credibility, I recommend a second opinion. Even if a doctor has MG experience, they may hesitate to use new treatment options they have yet to try with their patients. They're playing the safe card. But being offered or discussing all treatment options is a part of quality healthcare that everyone should receive. Even if another doctor confirms you have a more uncommon or rare form of MG, there are still treatment options to try, <a href='https://myasthenia-gravis.com/treatment' target='_blank'>https://myasthenia-gravis.com/treatment</a>. I would discuss all of these options with a doctor, if not two. Have you considered asking your doctor at your appointment coming up for a referral to a pain management doctor/clinic? - Jodi, Team Member
Sally Farrier Moderator & Contributor
edbrunk68... That is a lot going on!! I am so sorry you are going through this! What treatment are you on for the MG? I know from experience that dealing with more than 1 chronic condition can make the MG flare more. Until they are all under control. And it does not make it easy with just normal aging. I am including an article about MG & heart disease. Hugs to you & hoping you get some relieve soon!! Sally Farrier... <a href='http://Myasthenia-Gravis.com' target='_blank'>Myasthenia-Gravis.com</a> (team member). <a href='https://myasthenia-gravis.com/heart-disease' target='_blank'>https://myasthenia-gravis.com/heart-disease</a>