Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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jenr0323 05/18/2018

Hello,

This is my first post. I am going to try to condense the past 2 years. My symptoms started as fatigue and hoarse voice 2 years ago. I was evaluated and told I had GERD, needing a procedure. After the completion of the procedure my voice never completely return to normal. I was continually told I was depressed and started on several different medication of which non helped. Over time my body gradually changed, to within the past 6 months- I had double vision, blurred vision, raspy voice, unable to swallow food only thick liquids (it took to much effort to swallow), unsteady gait, weakness in my right side (tripping over my leg and dropping items with my right hand) weird frostburn sensation in my right index finger, fatigue (that I can't even put into words) and shortness of breath. These symptoms brought me to the hospital.

I was admitted to the hospital about 3 weeks ago and recieved 5 days of IVIG. A week after the last dose a "switch" came on and I felt better than I have in a really long time. Has anyone felt that great results in that time frame? I was also wondering how long does the effects of IVIG last? I am greatful that I continue to feel really great (3 weeks out). I am concern that I won't continue to feel this good. My friends and family mean well, but the tell me not to think that way. This is new and I want to know other people's experience.

Has anyone had blood test, MRI, EMG and CT been normal and still be diagnosised with myanthensia gravis? I go for a single fiber EMG in June. My doctor wants to wait for the results of the single fiber EMG before moving forward. I am currently on Prednisone 20 mg everyday. In addition, my primary care doctor needs to change some of my medication that can contribute to worsening symptoms of myasthensia grave.

I am basically overwhelmed by this "posssible" diagnosis. Any words of experience would be much appreciated.

northwoods 05/19/2018

Hi jenro, I don’t have a lot of experience but am responding because it was so comforting to me very recently to get a reply to my first fearful post. This seems to be a great community. There are lots of people that have lived w MG for years that are willing to share their experiences.

I’ve done a lot of reading about MG online (making sure I am reading from legitimate medical sites such as Mayo Clinic, NIH, MDA, etc). My understanding is yes, you can still have MG without the known antibodies that are currently tested for. (There probably are other antibodies involved in MG that are just unknown at this point)

MRI does not have capability of diagnosing MG.
The MRI is done to rule out other possible causes for your symptoms (brain lesion, MS, etc).

I’m not sure about the EMG, maybe someone else will weigh in about that.

Hope the IVIG effects last for awhile. Make sure if your breathing gets difficult again that you notify your doctor or head for ER. The breathing difficulties are not something you can just bull your way through.

Hugs to you!

Hssub 05/20/2018

I was diagnosed in December. My sister also has MG so I know more about it than most people and it was easier to get diagnosed. It is an overwhelming diagnosis. If you find yourself struggling find someone to talk to. I was so angry. I'm still frustrated but a see a therapist that helps patients with chronic diseases. It was great to talk to someone I didn't have to worry about upsetting.

PeterL 05/21/2018

@Hssub - that is interesting - your sister, also having MG. It is not considered to be hereditary, I wonder what the odds of that were? Did you buy a Lottery ticket the week you were diagnosed?

TLR 05/21/2018

MG runs in families due to genetics. I've read a few studies about it.

PeterL 05/22/2018

@TLR - do you have any references - would be interested to read them? I have always seen this response - "Researchers are uncertain of the cause of MG, but do not believe that it is hereditary or contagious. A genetic predisposition to autoimmune diseases can run in families, but MG is not thought to be directly hereditary. There is a 12% to 20% incidence of neonatal myasthenia in infants born to mothers with MG.

TLR 05/22/2018

Here are a couple of studies.

Familial aggregation of myasthenia gravis in affected families: a population-based study

Authors Liu FC, Kuo CF, See LC, Tsai HI, Yu HP

Published 2 November 2017 Volume 2017:9 Pages 527—535

DOI https://doi.org/10.2147/CLEP.S146617

***

The immunogenetics of neurological disease

Maneesh K. Misra Vincent Damotte Jill A. Hollenbach

First published: 21 November 2017

https://doi.org/10.1111/imm.12869

***

PeterL 05/22/2018

TLR - many thanks, very interesting. To be fair there has been mention of younger patients in the past and this seems to be the case here although some correlation with older onset of the disease. I suppose as it is only fairly recently, certainly here in the UK that men lived much beyond the retirement age of 65 the records will be thin on the ground? There are no known instances anywhere that I can find in my family, not currently and for what it's worth very few/none in the past and the tree goes back a good 400 years. Having said that there are others that have/had neurological diseases, certainly Alzheimer's.

TLR 05/22/2018

I was the first person on both sides of my family tree to have a diagnosed autoimmune disease.
I have four autoimmune diseases and suspect MG is my fifth. My mother and sister also have autoimmune diseases.

There is an interesting article "Why Autoimmune Diseases Are On the Rise" which mentions MG.

"A recent review of literature concluded that worldwide rates of rheumatic, endocrinological, gastrointestinal, and neurological autoimmune diseases are increasing by 4 to 7 percent per year, with the greatest increases seen in celiac disease, type 1 diabetes, and myasthenia gravis (a rapid fatigue of the muscles), and the greatest increases occurring in countries in the Northern and Western Hemispheres," says Dr. Rutledge."

fihghter 06/05/2018

reading all of mg.s troubles i have the following blog of definition of mg, with will make all felling a bit better, relation of our problems, i know that peter, ranson and other will agree, please take the time to read it, Andre(fighter)

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