possible myasthenia gravis

[Babs659]

I went to a neurologist on the advise of my GP.  He thought I should go and get other things ruled out, rather than just blaming my weakness and light headed all on Sjs.  I've had tons of bloodwork, brain MRI, etc.  The neuro sent me for more BW (post-exercise) and I will get a special type of EMG, as well.  He thinks it might be MG because I have trouble holding my 9 lb dog on my lap, and holding the blow drier.  Also, I can barely run anymore, having to stop and walk often (used to run 26 miles).

I don't have any ocular symptoms, or difficulty swallowing, though.  Mostly arm and leg weakness and woozy.  Unlike some of you, I don't have loads of pain, nor do I feel like sleeping a lot.  I know some of you have MG.  My follow up appt is not until the end of July.

Any thoughts???
Tired of feeling like crap.

[Poochie]

Hi Babs,
I don't have any thoughts on MG except that Irish deals with this on a regular basis and I'm sure she will pop in tonight and give you some. 

I just wanted to wish you luck with all the up coming tests.  I pray they give you an answer into this latest development.

Hugs, Pooh

[Poochie]

Irish, can you help?

Pooh

[irish]

Babs, Welcome and glad to hear that you are having such good testing. I was diagnosed with MG in 2006 and it soon became apparent that I had the MG for at least 40+ years. I would have bad times of fatigue, etc but I would take a nap, etc and keep going. I was never one to bike or run or do big exercises.

I did work hard on our hobby farm and worked part time as a nurse and raised 3 boys and a hubby! I couldn't hold the hair dryer good for years but hated to do it so had my hair in another style. Also, didn't have the eyes until around the time I got my diagnosis. My eyes are not bad at all but I do have 3 areas of weakness in my swallowing and have to be careful with chewing, etc.

I am not able to take Imuran or any of the other medications as I have severely low t-cells with many infections. I receive intravenous gammaglobulin one time a month and am finding improvement in my MG. I am not nearly as weak as I was and the breathing problems are much less.

I am going to close for now because I am one of those people who has to watch Jon and Kate plus eight tonigt and missed the first showing. Ask any questions, etc and I will be glad to answer. Did they do an antistriated muscle antibody blood test. Mine was off the wall it was so high. I did not have the EMG. Talk with you later. Irish

[Babs659]

Yes, he did the anti-striated muscle bloodwork and two or three more tests.  Won't know any results until the end of July.  Isn't it true that MG does not really cause wooziness or fatigue, per se?

PS-- I've read that Plaquenil can actually bring out MG or make the muscle fatigue and weakness much worse.  Have you heard this?  Are you on it?

[irish]

Babs, Plaquenil is not the drug of choice for myasthenia gravis. If I was able to take the DMARD drugs the doc would have put me on Imuran which works well for MG according to him. Also, it would slow the autoimmune response and help with the sjogrens symptoms. I asked about the Plaquenil and doc said it was not strong enough for me.

I don't think that MG causes "woosiness" BUT, I am not sure what you mean by that. Autoimmune diseases cause fatigue and MG will give you bad fatigue and the need to rest a lot. You will learn to pace yourself and do what you can to maintain a fairly normal lifestyle. When I get fatigued I feel like my energy is siphoning right out of my body and can hardly wait to sit down. Feel like I could fall down at times.

MG can cause balance issues and unsteadiness on your feet due to weakness making you prone to fall. Any autoimmune disease can cause what is known as "brain fog" and if you don't know what this means you have not had it. Anyone who has had brain fog knows exactly what I am talking about. Also, concentration can be a problem with autoimmune diseases.

I hope your doc checked your thyroid as people with sjogrens and MG often have thyroid disease. When I was having my really severe MG problems I would have spells where I would get so weak that I had to lie in recliner. I would have problems with breathing and taking the Mestinon really helped with that problem. Also, I would have severe weaness in legs and arms. They would get so weak they felt like they would just fall through the floor. Also, I would have crawling feelings in legs and arms at this time that almost felt like the muscles were trembing slightly---really a weird sensation. It would take a couple hours of very quiet rest and sleep before I would snap out of it.

Other times I would have such weak legs that I could not pick up my feet off the floor and I shuffled like Tim Conway did on the Carol Burnett show. Also had weakness in arms and couldn't lift pans and other things at times. REally weird feeling also. Wouldn't always know how weak I was until I had something in my hands so had to remain vigilant. There are so many issues with MG and I was not (at least in my mind) sick enough to have MG--especially when I had been told 4 years before that I did not have sjogrens or MG. Was also told my high blood work was because I had prematurely gray hair--plus also told I needed to see a psychiatrist.

If your EMG is negative don't worry about it. I had EMG in 2002 and it was negative and my  Immunologist told me that not all MG patients have positive EMGs just like not all MG patients have positive blood work. If you have the symptoms you need to be treated. My neuro keeps me on 10 mgm of Prednisone every other day to give me an edge in case I would have a big stressor that would kick MG in big time. She also wants me to take the Mestinon 2 times a day as she thinks having this "on board" is also a good protection in case of stress. Any stress or infection will drag you down fast. That is how I pretty much lived all my life. The older I got the worse I became though.

All autoimmune diseases sort of overlap with symptoms. The sjogrens has symptoms that MG also hahs as well as lupus. This is just the nature of the beast and is what makes diagnosing them so darn difficult. It is hard enough to get diagnosed and when you have docs who don't listen and blame everything on nerves it becomes one frustrating endeavor. Good luck and keep us updated. IRish

[Bucky]

Irish . . . I loved the Tim Conway shuffle he did on Carol Burnett.     Of course, I love Tim Conway . . . he's from my hometown in Ohio.      

Bucky

[Babs659]

Irish, I've been treated for Hashimoto's since age 13 (I'm now 50).  I guess all these illnesses go hand in hand.

I'm just concerned that maybe the Plaquenil actually caused the severe muscle weakness.  Since going on Plaquenil I have been able to run less and less.  I did have brain fog and fatigue, which are both much better, but I'm not sure if it was the Plaq or prednisolone.   The wooziness is severe light headed---without actually being dizzy.  I still have it but less severe.

I kind of freaked out when I read about the contraindication of hydroxychloroquine when you have MG.

Thanks for any and all input!

[irish]

Babs, I had never heard of the contraindication with plaquenil and MG. My immunologist said nothing about this. I just looked up the drug in my nurses drug book and it says can cause muscle weakness. I would assume that everyone is different and some people may be able to tolerate it. This info was not in big bold black or red print so it is not an extreme problem.

Also, be aware that Hashimotos and thryoid can really knock the stuffing out of us. I havae antibodies that are literally off the scale as above 3000. I have been having more episodes of thyroid death as indicated by higher TSH level. It will sneak up on me and I get so many side effect from the messed up thyroid. One winter I was so weak and had so much muscle pain in joints that walking was getting very difficult. I even got a script from my neuro for a wheel chair. Once I had my levothyroxin dosage increased and felt better in 2 weeks.

Prednisolone will not make you fatigued. If anything it will make you feel very "wired" and energetic and needing less sleep. Pred should not cause woosiness. The prednisone will help reduce the inflammatioin in the body and this can include in the smaller blood vessels in the brain. This is good for increasing wakefulness.

However, there is a balance issue that makes you feel off kilter in many MG patients. It is one of those things that is really hard to explain, but other autoimmune patients will know what you are talking about. Can also feel dizzy and it is at these times one has to be very careful when walking. Irish

[Babs659]

Hi, Irish.  I believe the prednisolone has helped a lot with fatigue and other things.  In fact, I did not feel any better on Plaq for 4 1/2 months.

I don't think the thyroid was responsible for my wooziness or weakness.  The TSH was only 4.6, and it has gone much higher than that in the past and I would just feel groggy and have brain fog and more muscle pain.  My T3 and T4 are always good.  This feeling I've had the past several months is very different.  Anyway, the doc did increase the synthroid and it made very little difference in these weird symptoms.

I'm thinking that the brain fog and wooziness are the Sjs, and the muscle weakness is either Sjs or MG.  I'll know in a few weeks.
Thanks

[irish]

Babs, I guess my feeling is just when I think I have figured out that a certain symptom is from one disease something changes and then I know nothing about any of it. They all cause fatigue and brain fog sure does come and go. My doc told me that with the Hashimotos it is hard to know what is from the actural Hashimotos(which it the name of the autoimmune disease that is caused by the antibodies --- then get the time when the thyroid gland actually dies off a little at a time causing the TSH to rise. It is so darn complicated and I was so surprised at how lousy I felt with a 12 and 15 TSH. Never would have guessed it! Irish