Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 11-12-2015, 03:34 PM #1
Ponywoman Ponywoman is offline
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Default Hair Loss Complete... with Myasthenia Gravis!

Hello, I'm new on this site as my past immune/severe disease problems have been 45 yrs of Rheumatoid Arthritis + 1 yr of Collagenous Colitis. Despite extreme crippling, I still managed to enjoy life fully with my husband of 50 yrs on our Appaloosa horse farm. But I suddenly was hit with 100% of MG symptoms in June of 2015 & was in a wheelchair within days. I've spent all summer trying to get a definitive diagnosis because I am sero-negative. I am starting with a new neuromuscular doctor at Ks University Med Center but I'm feeling that she's also somewhat stumped by my muscles that cause me to struggle so hard to walk, I sweat heavily & feel I'm walking through quick sand while running marathons! (I also had the inability to swallow or chew with 1 eye closing when reading or watching TV until I upped my prednisone to 25-35mg daily. The muscle failure crept into my arms & lower legs but I've improved enough to walk on my own-- with difficulty).

My question is: In June I had waist long dark brown hair although I'm 68. But in the past 2 months, 90% of my hair has fallen out & within a week, it will all be gone at the rate its coming out. There is some small grey hairs coming in so I'm not bald but I'm wondering if this is common with MG? I also got a petechiae type rash spreading over my failing leg muscles which traveled up my groin, belly sides & especially covered the glute muscles on my hips. My muscles atrophied over night & "all" my skin fell off on my legs & sides of my hip muscles. I originally suspected a toxic drug reaction so quit several medications including the sulfer drugs I was taking for arthritis & colitis. But my skin continued to flake off daily & is only now recovering the past two weeks.

I wasted all summer with my rheumatologist who said she'd help me but then got angry with me when she couldn't figure it out. The neurologists are puzzled. Loss of my over 2' long dark hair probably seems silly to most of you but now I've lost all my self esteem & although I remained a sunny person, struggling to overcome my disease problems, this hair loss is the proverbial camel's straw that is sinking me into depression. I note that I didn't go to a dermatologist as it takes months to get an appointment & she'd probably say the hair loss is an effect of a severe illness which causes hair loss typically 2-4 months later. I haven't gotten any of my other numerous doctors to even look at the rash or exfoliating skin when I mentioned it. I'm also very low in iron (always am) which can be a problem for hair, I've read.

Any one else out there with hair & skin problems with Myasthenia Gravis?
Thanks so much to everyone who posts, Marsha/ponywoman
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Old 11-12-2015, 11:12 PM #2
AnnieB3 AnnieB3 is offline
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Marsha, What you have sounds like alopecia. That's often more associated with lupus. It is not "caused" by MG. There are other causes for hair loss, however, and an immunologist might be able to help, too.

Many people with autoimmune problems have more than one disease, unfortunately. If there's even a chance that you have lupus, it needs to be diagnosed and treated, especially due to it's potentially damaging effects on the kidneys. Has anyone done a urinalysis to look for protein? When someone is on steroids, they have to look at other tests to try to uncover what's going on.

Since you are on steroids, any autoimmune testing they would do right now would more than likely make the tests come up negative (false negative).

I would suggest two things. One, get a second opinion from a rheumatologist, hopefully a lupus specialist. Two, find a MG expert who "gets" that steroids make antibody tests go negative. A Single Fiber EMG, however, might still be positive.

May I be blunt? Don't you dare let anything or anyone destroy your self-esteem! Hair grows back, especially when an underlying disease is treated. In the meantime, there are really great wigs these days. You have the right to look and feel beautiful, no matter what is going on with your immune system. I don't know what it feels like to lose hair, but I think most women would hate it. So I can't know how you feel. But there are ways to make your situation better.

I'm just really sorry that the doctors aren't helping you with some obvious issues.

BTW, have you had a Schirmer test? Do you have dry eyes or any sign of Sjogren's?

There's also the possibility of polymyositis as well, which is more of a fixed weakness. A good neurologist would know the difference, since MG is all about fatigable weakness.

Muscles don't atrophy overnight. That's very odd. Again, you need a thorough evaluation!

Also, I think a visit with a hematologist about the low iron is a very good idea. Sometimes you have to go to more than one specialist to figure out what's going on. They are experts on the blood and would probably investigate more thoroughly than a rheumatologist!

I really hope that you'll get some more help!

Annie
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Old 11-12-2015, 11:37 PM #3
Lily7 Lily7 is offline
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Hello, I was so taken by your post I wanted to say hello. I don't know much about medical things so I am not much help in that respect, but I do feel akin to your plight in several ways. I am also 68 years old, have collagenous colitis and have recently been diagnosed with MG. I am seronegative, none of the blood tests gave any indication of MG, the visit to the neurologist didn't show him anything that jumped out to him, he did an EMG and it was ok. However he persisted to look at my situation and sent me for a single fiber emg done by a highly skilled SFEMG neurologist. It revealed that I had MG. it finally validated the symptoms -- which was good. It also scared me a lot because I was now facing another challenging disease. I am all over the place with breathing, swallowing, eye, and general weakness issues. Also the colitis is not being very manageble at this point either. I am not yet to a point of either the MG or CC being in a stable mode. Lastly, One thing that bugs me is that my arms bruise in deep red splotches or the skin tears and bleeds at the mildest touch. Not the end of the world I know but just looking at my arms makes me feel 100 years old. So, my heart aches for you about your hair, that's just a really low blow. I so get that. Intellectually we know it can be managed, but emotionally ... Sigh.
So brave lady, keep up the fight, see if you can get to a major clinic with a MG specialist. I wish hugs and strength.
Lily7
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AnnieB3 (11-13-2015)
Old 11-15-2015, 08:33 PM #4
Ponywoman Ponywoman is offline
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AnnieB3, gosh, thanks so much for your long & thoughtful replay to my hair loss "tragedy" that has accompanied the onset of MG symptoms I started experiencing this Spring! Yes, I definitely have alopecia-- guess mine's called alopecia symptomatica. And yes, I've been tested for Lupus since 1971 over a dozen times. With every new Doctor comes another Lupus test. Always negative. But, then, I was negative for the RF (RA) rheumatoid factor for decades also even while my hands twisted & joints fell apart. Only after 40+ years did I begin to test positive for RA so I was labeled a "crank" & complainer for oh so many years & told I didn't have RA. This pattern, I fear, is starting all over with me having 100% of MG symptoms but testing sero-negative! And, yes, I queried my new Neuromuscular neurologist about the possibility of the prednisone preventing blood testing accuracy. I've also spent hours going over & over the symptoms of Sjogren's & polymyositis. Not my symptoms. I particularly thought at first that I had DERMATOMYOSITIS what with my RA & the sudden appearance of an extensive rash on my muscles but the symptoms didn't fit & my rheumatologist didn't consider it as a possibility either. My rash is of a petechiae nature (like tiny measles spots) & comes & goes with varying MG symptoms & even Colitis symptoms all arrive at the same time. I guess I didn't know there was a Doctor called a hematologist. Thanks-- I will look in to that as my GP Doctor said my iron & other blood factors were so poor I needed a transfusion but thats never happened. I've been reduced to more or less treating myself this summer as the 30-40 Doctor appointments have gained me nothing. I began using a liquid iron supplement a month ago--this one is surprisingly tasty & I mix it in a bit of fruit juice & sip slowly for an hour or so. My SKIN is clearing up: no rashes recently & the layers of flaking skin that was falling off daily has all but stopped. Anxious to get back blood tests taken 2 weeks ago by new neurologist to see if the iron has improved. And, finally, yes, muscles CAN atrophy within 1 week's time as mine did! I was very strong working outside on our farm & in the garden every day inspite of all my RA crippling but with the onset of MG symptoms, I watched my calf muscles shrink by at least a third in 1 week's time! My thigh muscles, hip, etc have been reduced in half over the summer but the neurology testing showed little or no muscle damage! Amazing.

And Annie, sorry I hadn't responded to your kind posting earlier. Exhausted for 2 days after I went outside & tried to pick up jillions of tiny sticks left by 2 days of high winds in our yard (with 70 trees in it!) But, before I did that? Guess what? I had my husband drive me in to "town" & I DID buy a very nice wig! Long but not waist length like I was until June. Dark brown like I was until recently, too. Now, at least, I won't be embarrassed to go out of the house! Thanks again! ponywoman/Marsha
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Old 11-15-2015, 11:32 PM #5
AnnieB3 AnnieB3 is offline
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Marsha, No need to apologize. We all know what illness does to us. I use to be punctual and now I'm always late.

Has anyone tested your immunoglobulin levels (i.e., IgA, IgG)?

I'm asking because if you have a low IgG, MG tests could come back negative.

Have you ever been tested for Celiac Disease? It's pretty common and might explain the iron deficiency. It can be an insidious disease. With CD, a low IgA would make for a false negative. Do you feel sick after eating gluten?

Good, I'm glad you got a wig! We can only deal with what's in front of us. Any challenge can be made better!

Well, 1 week's time isn't overnight! Yes, muscles can atrophy fairly quickly, but you said you've been pretty active, so that's odd.

http://www.lifeextension.com/protoco...asting/page-01

Have you seen an immunologist? They can run the Ig's and do some general immune testing.

Again, any EMGs, etc. would look normal while on steroids. Don't doctors get this basic stuff?!!

We all get the doctoring overload, but you might need some more done to figure all of this out.

Someone needs to pull all of this together for you. Have you journaled all of your symptoms/diseases, when they began, when you started steroids, etc? That would be a very helpful thing to do, especially chronologically.

Pay attention to whether your weakness is fatigable or not. Do you have ptosis? Have you taken photographs of your face in the morning and then in the evening to see if there's a difference?

Keep seeking out help. Someone will figure this out for you!

Annie
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Old 11-19-2015, 09:00 PM #6
Ponywoman Ponywoman is offline
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Hi Annie, more Doctor visits this week with nothing new. Haven't even gotten back results of all the testing that Ks University Med did 2-3 weeks ago. Yes, I've had all the immune testing done-- seemingly each Doctor redoes the same tests even though I show them copies of all my prior testing by other Doctors. Because of my 45 yr history of Rheumatoid Arthritis, I always get the CRP done, the RF (rheumatoid factor, positive or negative but was only recently positive). And, theres the CCP AB(IGG) which when I look, I last tested greater than 250. Don't think the labs show a figure any higher than that. And mine is almost the >250 reading.

As far as celiac, its funny you mention it because about 1971, soon after I was suddenly struck by rheumatoid arthritis very painful symptoms, I got the bright idea to exclude all gluten which I did for a year. My disease worsened, of course. Still remember baking bread with lima bean flour! Yuk! But I still get tested for this all the time. About 6 months ago, my Gastroenterologist sent me to a Hospital lab for 6-- count them-- 6 sensitivity tests for gluten! The lab techs had to look most of them up as never heard of them. I looked up these labs later online & some were considered obsolete even. What a waste of time, money-- and my blood! Ha. All tests were negative. I'm starting to feel that this Celiac Disease thingy is a bit like the disease of the year because everyone thinks they have it. For the tiny percentage that do, tho, it can be devastating....

My face is good... nothing unusual there except that at 68 I'm getting wrinkles. Could be worse considering all my time outside in a hot country, treeless sun in Kansas where our barns & horses are. (One can only sit under a shade tree for a little bit when working with horses). I look at my face a lot, too, worrying about steroid effects but see none yet. (I know what that looks like, too, as steroids swelled my mother up like the proverbial balloon before dying from a failed liver brought about by a blood transfusion 10yrs earlier-- a transfusion that had Hepatitis B in it.)

Thanks for replying again... I really appreciate it. Having bad days & the occasional-- not good but-- better day. Good to hear from folks thinking about one's problems, Marsha
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Old 11-15-2015, 08:49 PM #7
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Hello Lily7, I feel like we must almost be twins-- what with our ages & similar diseases. My Colitis IS nice and quiet for a few weeks now I believe because I went back to taking the full 3mgx 3 daily of budesonide (generic for Entocort). On only 2caps per day, I was still having all kinds of problems. I feel like if one can get their colon back into a healthy "shape" many other health problems will go away. I was surprised to read that our colons are responsible for up to 90% of our immune system! Who would have thunk it?

Yes, I'm going to the Ks U. Med Center in Ks City for a Single Fiber test altho the new neurologist told me to think about it first as its tedious & I hate to go to the "city". (Its impossible to get parked at KU Med, too). I'll tell her to make my SFEMG appointment when I next see her...

I'm sure you're taking Vitamin C for your arm "problem" but you must also certainly take Vitamin K (esp K2), if you aren't, as it is even better at preventing bruising & bleeding of the skin. My arms are ugly, ugly, ugly as I've lost all the muscling & my arms are just "sticks" with no muscle. I have to wear long sleeved tee-shirts/shirts even in the summer, even in the house I'm so embarrassed. So I know how you feel about the looks of your arms...

I'm so happy that such lovely folks such as yourself, are "out there" and can sympathize with me and take the time to post about my/our problems! We all just have to "hang in there" as the ol' saw goes but it really helps when others are taking time out to express their concern with my/our problems. Thanks so much, ponywoman/Marsha
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