Lupus and Myasthenia Gravis

Posted in the Myasthenia Gravis Forum

Juliana

Hoyt Lakes, MN

#1 Apr 21, 2009
Yesteday I got a call from the neurology PA I was seeing and she told me that my labwork had come back with a high positive for the antibodies for Myasthenia Gravis. I'd never heard of it before and she suggested I go to the Mayo Clinic Website. I started to read about and it seemed to really fit. Today I saw another higher up neurologist in their practice and he said that because I have lupus he isn't convinced that it is a true positive result. I got the feeling that because I wasn't totally keeled over and on a ventilator, he didn't think I had it. He even made the comment about how bad this disease is and that people can wind up on ventilators and die. He reported that as if to tell me that I needed to go to the E.R. right away if that happened.(DUH!)
I'm frustrated. I've been very sick and I need answers. I'm tired of the run around with a million and one doctors.
Amy
juliana

Makati, Philippines

#2 Jul 10, 2009
hi im charlotte from phil im v=been diagnosed for lupus in 1989 ive been taking steroid for 20 years thanksgod my sle wanes up ut this year april 2009 ive been diagnosed of myasthenia gravis is the most frustrating illness ive been taking mestinon and imuran and steroid but im slightly ok but ok, tell me your medicine are ok now?
Valerie

Auckland, New Zealand

#3 Jul 16, 2009
HI Juliana

I have both MG and lupus. I hope this will put you at ease but many people don't struggle with breathing and don't half keel over. I am not sure what country you are in but here it MG is rare and you may find that some Dr's dismiss the MG and will only focus on Lupus because its more familiar. My Neuro confirmed I had both by my bloods. The rhymotogist on my first visit started saying no you don't have MG just lupus then when she opened the file and saw the bloods she said I take that back you have both.
I don't have nasty nasty symptoms but I do get weakness, fatigue etc.
The sort of good news for you is that most of the meds for lupus or MG actually cover both disorders. I use steriods and plaquil which covers both.
Don't let them get you down. Hey if you are on facebook there are some fantastic groups there where you can chat to heaps of people that suffer from MG and lupus or both. Its great for support and also info.

Take care of yourself.
Debbie

Northville, MI

#4 Aug 25, 2009
Valerie wrote:
HI Juliana
I have both MG and lupus. I hope this will put you at ease but many people don't struggle with breathing and don't half keel over. I am not sure what country you are in but here it MG is rare and you may find that some Dr's dismiss the MG and will only focus on Lupus because its more familiar. My Neuro confirmed I had both by my bloods. The rhymotogist on my first visit started saying no you don't have MG just lupus then when she opened the file and saw the bloods she said I take that back you have both.
I don't have nasty nasty symptoms but I do get weakness, fatigue etc.
The sort of good news for you is that most of the meds for lupus or MG actually cover both disorders. I use steriods and plaquil which covers both.
Don't let them get you down. Hey if you are on facebook there are some fantastic groups there where you can chat to heaps of people that suffer from MG and lupus or both. Its great for support and also info.
Take care of yourself.
how do you find it on facebook?
Debbie

Northville, MI

#5 Aug 25, 2009
I am on facebook and would like to find the group you refered to. I have found that I learn from other people with MG then doctors.
Valerie

Auckland, New Zealand

#6 Aug 25, 2009
Hi there

The facebook groups I am on are:

Myasthenia Gravis (1555 members)
I have lupus, Whats your excuse?(1391 members)

You need to join facebook to join these groups, so you need to go to www.facebook.com and follow the steps.

Here are links to the pages directly but I suspect you need to be a facebook member to get there. You want to read the posts on the wall.

http://www.facebook.com/home.php#/group.php...

http://www.facebook.com/home.php#/group.php...

Hope that helps :)
charlotte

Cebu City, Philippines

#7 Mar 14, 2010
hi i have lupus and now mg what are the supplement you take to less the sypmtoms i have weakness every time i wake up and through out the day ive been suffering these for almost a year is these sypmtoms will lessen> please help
jen38710

Palos Verdes Peninsula, CA

#8 Jul 16, 2010
I am googling looking for answers and came across this page. I have myasthenia gravis, lupus, fibromyalgia,and sjogrens syndrome.Actally, I was dx with mg in 2003 because literally my hands stopped working and i couldnt smile, i had a hard time talking. it was like my tongue and lips and sometimes my eyes would just shut down. So I was treated with ivig first, then plasmapheresis and finally thymectomy. The symptoms eventually stopped and i havent felt the mg in years. Then Recently i had joint flares and pain 24 hours a day. Throughout testing meds it seems like things just keep adding on. Is there more? Am i more susceptable to these new ones BECAUSE I had the thymectomy? Anyhow im feeling your pain, and just know the mg can get better. now were working on the lupus...
cony

Monterrey, Mexico

#9 May 11, 2011
en mi experiencia ( tengo lups desde hace 13 aņos y miastenia de 6 aņos)no te preocupes afortunadamente, los tratamientos para lups y miasteia son similares, la progresion grave de ambas es rara.busca las guias medicas en:imss/gob/mx/miastenia gravis and lupus
Valerie

Christchurch, New Zealand

#10 May 11, 2011
Jen a woman who runs the lupus support group here told me when I first diagnosed that if you have one autoimmune disease that it was very common to have multiple autoimmune diseases. I don't think the thymectomy has anything to do with it. Weirdly the lady said it was heathier to have more than one thing - I can't recall why she thought this though. Hang in there it can be so hard when the body decides to play nasty. Take good care.
Sharon

Galesburg, IL

#11 Oct 13, 2011
I was diagnosed with MG in 1997. I have had thymectomy, plasmapherisis, ivig and been on steroids since diagnosis at various levels. Just when I thought the MG was well controlled, I started developing symptoms of lupus. I found this strange because 23 years ago a doctor told me she thought I had lupus, because I had many symptoms and some abnormal blood test. I am thinking there has to be some connection between the two. I think I have had lupus for awhile but because I was taking steroids it masked some symptoms. But it does explain some of those symptoms which didn't fit in the MG diagnosis. I want to throw a flag for piling on!!!
Jmaca

Newtown, CT

#12 Nov 4, 2011
About 30 years ago, I was diagnosed with lupus, but had positive antibodies for MG. I didn't show MG symptoms for years, but do now. I have been told by both a muscle disease specialist and a rheumatologist at a well-respected teaching hospital that MG is "kind of an opportunistic disease,vhopping onto the bandwagon" in someone who already has an autoimmune disease.
I was also told ages ago that because I have more than one autoimmune disease, my course progression in both diseases had a very good chance of being mild. That has proven true over the years.
stacey

Brooklyn, NY

#13 Jan 18, 2013
I was diagnosed 2 yes ago. I had a thymectomy a yr ago, doing well no symptoms. My mother died from 10 yes ago. I'm hoping I will get lucky and not get lupus.
stacey

Brooklyn, NY

#14 Jan 18, 2013
I was diagnosed 2 yrs ago. I had a thymectomy a yr ago, doing well no symptoms. My mother died from lupus10yrs ago. I'm hoping I will get lucky and not get lupus.

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