Author Topic: Myasthenia Gravis?  (Read 592 times)

susanep

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Myasthenia Gravis?
« on: October 14, 2019, 09:38:33 AM »
Does anyone here have this condition? I had been reading a bit on it. If you do have it, what symptoms do you have?

Thank you!
susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

susanep

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Re: Myasthenia Gravis?
« Reply #1 on: October 14, 2019, 10:04:56 AM »
irish, I was reading another post and seen where you have this. I sort of thought you did, but wasn't sure.

I would appreciate anything you can tell me about it.

I go at the end of this month to see my rhuemy and  want to try to cover all I can.

susanep :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

irish

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Re: Myasthenia Gravis?
« Reply #2 on: October 14, 2019, 03:41:17 PM »
I started having symptoms back in 1964 which amounted to chronic fatigue and weakness. It was so vague but I had to rest a lot and I was just starting to have my babies so I was a basket case much of the time.

As the years went by I still have this weakness and fatigue but it was sort of irregular in its appearance and it would improve when I rested. I always had to rest a couple of times a day. Not sleep all the time but lay down or sit and rest.

I started having problems in my 30's with reflux which can also occur. I would have times when I felt like I was going to stop breathing ands docs always told me it was my asthma. I eventually had occasional problems with picking up my feet and no one believed me!! After all, I was a nurse and working.

I had a severe episode that caused me to miss 2 months of work., I was diagnosed with Histoplasmosis. I feel that I was having some Sjogrens at this time also as I had the dry mouth for many years. During this time I became unable to get myself out of a bathtub and had to start doing showers. This was in 1980. My boys did not know this til recently. Well....I didn't have them in the bathroom with me when I showered!!

IN 1990 I started having more fatigue and weakness and also some spasms in leg muscles. I just piddled along and complained to docs for the next years. Miserable and life was not fun. Then in 1996 I began with the loss of hearing in right ear, the weakness continued and I missed 4 months of work that time. Staggered and weak that finally subsided and back to work I went. Then finally diagnosed with Bullous Pemphigoid in 2002 which was first diagnosed autoimmune disease. In 2003 diagnosed with Sjogrens 3 months after having to quit work....this ended up being forever and one doc told me to apply for disability which I got the first time around.

Finally in 2006 I saw my immunologist. He took one look at me and asked me how long my voice had sounded like it did. I sounded and still do..like I am talking in a barrel(symptoms of Myasthenia. I also could not hardly blow up a balloon and always had trouble passing my CPR class cause I couldn't blow up ResusiAnnie. At this time I was having a lot of trouble with food going up into my nasal cavity when I swallowed. This took was a symptoms of Myasthenia. In 2002 I was weak off and on and had been to many doctors including then Mayo clinic many times and they said I needed psychiatric intervention and did not have myasthenia or sjogrens.

Immunologist did blood work and said I had Myasthenia and that test was really high.I ws started on IVIG in October of 2006 once a month and still get it. I have gotten more weak in arms and legs but still manage to go up to my sons once a month cause my infusion center is close to his house. It is getting very hard but I am ornery and am not ready to give that up yet. Same time diagnosed with myasthenia I was diagnosed with Hashimotos and severely low t-cells and IgG levels. Tao years ago diagnosed with 2 different antibodies that cause deafness.

You'd think there would be an antibody to make us eat less!!!!!!!!! Hope you find what is going on. There is a test that many doctors don't used. It is called Anti striated autoimmune muscle antibodies. I hope I got that right. Supposedly this is more specific for myasthenia. Good luck. Irish

Hope this helps. Do a search for myasthenia gravis discussion forums and you will find some interesting discussion.

susanep

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Re: Myasthenia Gravis?
« Reply #3 on: October 14, 2019, 05:35:35 PM »
irish, Thank you so much. I will do some more reading, but you were so helpful. I have a lot of hearing loss in my right ear. When I fell this time and broke my wrist, my foot had went down weak and under me then the rest of it happened. I always have the fatigue and have to lay down not even to sleep, but to rest until it is restored almost like charging a battery back up.

I have had the reflux for a long time, and when very tired and over do something I will go to bed, and tell husband that I am so tired it feels like it takes too much energy to even breathe until I get some rest.

I seem to have to watch everywhere I walk now afraid that something won't go down right.
I probably don't have it but just thought I would at least be on the watch for more good things.NOT!

Hugs and Love,
susanep  :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

sixty

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Re: Myasthenia Gravis?
« Reply #4 on: October 14, 2019, 06:20:59 PM »
Geez Irish!  They thought you needed psychiatric intervention?  How insulting that must've been for you.  I'm sorry you had such an experience.  Sometimes they get it so very wrong!

irish

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Re: Myasthenia Gravis?
« Reply #5 on: October 14, 2019, 06:43:17 PM »
The reflux was from the weak muscles in esohapus, etc.....but could have been from
Sjogrens also. Remembere that Sjogrens can accompany the Myasthenia and the fatigue and weakness can be from the Sjogrens.

The major signs are the swallowing...also the droopy eyelids which I think I forgot. I put all that stuff down cause these are the things that make autoimmune diseases so hard to diagnose. That....and drs who don't listen!! Also, swallowing problems are involved also. A swallowing video is important to have if there is trouble with pills and food.

The interesting thing is I had so many more symptoms than that and so many flares that I didn't know were flares years ago. It is amazing what we can get done when we are ill and undiagnosed.

You need to remember that you have lupus and Sjogrens so you have a double whammy. My immunologist and dermatopathologist always thought I had lupus but I have never had any positive blood work. Take care
Susan. Rest is a big thing isn't it. Irish

susanep

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Re: Myasthenia Gravis?
« Reply #6 on: October 14, 2019, 08:23:17 PM »
I get choked easy.
Yes, getting rest is nice. I wear a c-pap at night, and it always helps my lungs to open up better.
Hugs irish
susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi