resting aggressively
 

I tell my son I am "very very busy" because I am resting aggressively! You have to get flat, get gravity off your body and really rest it. Put pillows under anything where there is muscle tension until you can float like a jelly fish. Pool floating works great, too! I rebound faster if I truly, truly rest my muscles, my mind, my emotions. Have to have the quiet in the room, the lights not bothering me, truly restful. The other thing I have done with good results is just go to my primary care doctor and tell her I am having a flare. She prescribes what I call a "poison ivy pack", a ten day thing where you are tapering down, of prednisone. For me, it's often enough to just hit the reset button and pull me up.

Camptocormia?
 

Two years ago I was diagnosed with camptocormia. I bend forwards or sideways when I walk. There is not enough strength in my lower back muscles to hold up my spine. Walking is very difficult without two sticks. In fact I now use a mobility scooter. An MRI showed wasting of the para spinal muscles, but not everyone has this show up on the MRI. I think I have myasthenia as well now, though the tests are negative. Look up this rare disease, which goes hand in hand with autoimmune diseases. I hope you find an answer soon for your health problem.

Mg second time around please help
 

26 years ago I've gone through the tyhemoctomy having much thymus glad removed to eliminate the effect of mysatinia gravis here I am 26 years later and finding myself going through it again my eye is completely closed now with no muscle at all I've been prescribed mestinon to elevate the effects of my eye muscle but to no avail they are making no difference at all catscan scheduled in few days to see if by any chance the thymus has regrow at a complete loss as what can be done if the thymus has or has not regrow my life is now at a standstill I cannot work or drive if there is anyone with some positive feedback I cold sure use it right now

When I started taking mestinon it gave me awful stomach cramps I worked out if I took it with milk and do not eat food half an hour before or after taking then I was ok also try and sit still after taking don't bend down too much etc if I do it gives me acid indigestion. It works for me hopefully it might help you a little too

I find mestinon takes about half an hour to work and lasts 3 maybe 4 hours and some days it works better than others and sometimes when it wears out the fatigue hits you like a brick wall!!

Help does this mean it is spreading
 

I have been told by neurologist they are 99% sure I have MG, it started with double vision one week ago with drooping eyelid. I have a pain over left eye and have started to feel pains going down my neck. Does this mean it is spreading to other parts?....

Any advice really welcomed

Thanks
Dave

Best wishes and prayers go out to you.

New to MG and How much variation is "normal"
 

Greetings,

I've recently been diagnosed with MG. Honestly my neurologist is still a bit skeptical because I tested negative for AChr antibodies and the symptoms came on after a bad concussion. However, my response to Mestinon is like night and day for resolving double vision, tension headaches, and overall fatigue.

My question is how much variability is "normal?" The double vision is fairly consistent but other muscles seem to vary greatly from day to day. Some days it's my legs, others my arms, and recently breathing which eventually passed. I understand it can vary, but I guess I expected that at least which muscles would be affected would be somewhat consistent.

Does anyone else experience MG this way or should I be considering asking the Dr. about other Dx?

Thanks, Lee

Diagnosed in 2015 at 42
 

Hi. I was diagnosed as a 42 yr old woman with Ocular Myasthenia Gravis (ptosis, diplopia) in September 2015 by a neuro-ophthalmologist. I was advised based on my history of symptoms that the OMG likely started a year or so before.

In June of 2016, my neurologist advised I had likely advanced to Generalized MG (fatigue, muscle weakness, albeit mild). This was confirmed with a positive SFEMG administered in November 2016 at Cedar Sinai. A prominent neurologist at Cedar Sinai asked me *before* the SFEMG "so when did you decide you had MG?". I told him I'd never heard of it before my OMG diagnosis by the neuro-ophthalmologist. I also had bloodwork done at Cedar Sinai which determined I am triple seronegative. I tested negative for the AChR, MuSK, and LRP4 antibodies and am therefore *not* a good candidate for a thymectomy. However, the clinician who administered the SFEMG test told me he knew I had MG within 5 minutes of starting the test and I do have an excellent response to Mestinon.

I have received some pressure from my care providers to start steroid therapy, but am dead-set against right now it because I fear the long-term side effects and my symptoms are still mild. My Mestinon protocol was originally 30mg (breakfast), 45mg (lunch), 45mg (supper), and 30mg (bedtime), but I've had to bump it up to 45mg for each dose this year. I use coffee and tea as "pump primers" for the mestinon, usually 1 cup (no more than 2) per day. I've found that if I take a biotin supplement at night and a B12 supplement in the morning, I have noticeably more energy during the day and less fatigue in the afternoon.

I cannot tolerate heat anymore (prior to my diagnosis, not an issue) and bright sunlight tires my eyes. I am functionally a vampire. I handle strenuous exercise well ONLY when it's *cold*. Mowing my postage stamp of a front lawn on a 75 degree morning now makes me feel as if I've run 5 miles. The hotter and sunnier it is, the more I am prone to fatigue and muscle weakness. My legs can feel like stumps and it's hard for me to hold things in my hands. But, I am able to ski and ice skate for hours. I also experience muscle pain in connection with hot days and any sort of physical activity. I've been told this isn't MG, but what else would it be since I've been tested for MS (negative)? It started with the Generalized MG.

An interesting fact about me is that I have been on continuous birth control (for an unrelated medical condition) since 2012 meaning I have no menstruation cycle. I wonder if this has something to do with why my MG is still mild as I understand menstruation can exacerbate MG symptoms for women.

I was exceptionally physically fit prior to my MG diagnosis and have been athletic my entire life. Now, I guess I'm just average, but I do wonder if this fitness has served me in a positive way with the MG. Finally, I have experienced 2 episodes in the last 2 years where I had difficulty seeing, talking, swallowing, walking, and breathing (felt like my chest was being squeezed). I didn't feel like I needed to go to the ER, but it was still frightening. These symptoms resolved after about an hour of complete cessation of physical activity. Since I've never experienced anything like this prior to my MG diagnosis, I am guessing these episodes were mild MG crises.

I'm sharing these personal details of my MG with the hope that my experience is helpful in some way to others.

Hi Lee, please feel free to read my introduction post on this thread. I am triple seronegative, but also find it's night and day with mestinon. Get a Single Fiber Electromyelogram (SFEMG) test done. It is considered the gold standard for MG for those who are seronegative. You should also get tested for LRP4 which is the latest antibody discovered to cause MG. Unfortunately, there are likely MANY antibodies that cause MG, but we only have tests for 3. If you are like me and test negative for LRP4, welcome to the small club.

Sudden onset of MG
 

Hi all! I just found this forum, and I'm hoping to find some answers and understanding of this rare disease I have been diagnosed with. Here is my story...

I was an active healthy 55 year old female. Seven weeks ago, my vision all of a sudden became jumpy and blurry. I thought something was wrong with my contacts. I went home and started messing with my contacts. The next day my eyelid was "swollen" and I thought it was because I had messed with my contacts. I realize now that was the droopy eyelid. Two days later, my face felt numb and I could not raise my eyelids to put on my mascara. Ok, better call the doctor!

She had three things she wanted to draw blood for, one being MG. Two days later it came back positive. I made an appointment with a neurologist and had a chest scan on my thymus, which showed a tumor. By the time I saw the neurologist a week later, my symptoms had rapidly progressed. Trouble chewing, holding my head up, walking, etc. At that point they scheduled me for a thymectomy. The thymectomy was scheduled for two weeks later. When I went in for the surgery, they decided I was too weak to do the surgery. They admitted me to the hospital and gave me IVIG infusions for two days.

The surgery went well, and the tumor was benign. I am now three weeks out of the thymectomy, but the MG is still awful! I am home now and have PT and OT 2-3 times a week. My arms and legs just don't want to work. After I do my PT (which is VERY minimal, like 5 minutes of leg and arm exercises with1 lb. weights) my whole body shakes and convulses for about a half hour. My symptoms seem to change daily and sometimes several times within a day. From eyes, to face, to arms, to legs, sometimes even needing a walker.

Right now I am on 80mg of steroids daily, and 120 mg of Pyridastigmine 4 times a day. I go back to my neurologist next week and I think they will start weening me off the steroid.

This MG has been very hard for me to wrap my head around. Two months ago I was on vacation in Rome climbing the Colosseum stars with no problem! Now I can't even get down my stairs at home without having to rest when I get to the bottom. I used to swim a half mile or walk 4 miles a day, bicycle, kayak, etc., UGH!

So that's my story, now here are some of my questions...

1. Have any of you heard of anyone whose symptoms came on this quickly?
2. Will it get any better once they start weening me off the steroids?
3. I've heard it can take 2 years before you go into remission after a thymectomy, but do the symptoms lessen before remission?

I'm sure I will have more questions after I post this, but any insight into this new normal of mine would be greatly appreciated!
Thanks!
Kristi

Hi Kristi

Welcome to NeuroTalk :).

I am sorry to read about your MG. I don't know much about it but I am sure that other members will be able to offer you support and good ideas.

Best wishes.

Hey. I was just wondering if you ever got an answer. I also have EDS (which has caused POTS) and have been diagnosed with MG. I am very interested in the link between mestinon helping MG patients and people with POTS. I wonder if there is a connection...

Sent from my SM-G955U using Tapatalk

new here
 

I am a 38 year old male, I am new to this forum.

I have struggled with a mystery illness for the last 10 years. I was diagnosed with MG last year by my nuro who specialized in rare nuro conditions.

Took mestion for the last 12 months life was great, training crossfit and Olympic weightlifting with no problems what so ever at all. Then over the period of the last month I am back to not being able to walk very good, swallowing is weak and eyes a dropping.

Life with MG I guess.

Hi Mountaineer

Welcome to NeuroTalk; I hope that you will find the community as knowledgeable and supportive as I have :).

The MG forum is very active so I am sure that you will get lots of support and good ideas from other members.

All the best.

MG crisis
 

How can I get my mom through the chronic exhaustion from the mg crisis?
My mom is not rebounding it’s almost 2 months

I need regular IVIg infusions in addition to Mestinon.

Can taking Keppra lead to Myasthenia gravis
 

I was put on Keppera the first of December. Within two weeks my eyelid in my left eye started drooping and I started noticing double vision. I was seen by an Optometrist and tested out to have 3 Diopters of Vertical prism. When I returned to my neurologist and complained about my double vision and eye drooping he ran teat on me thinking I had Myasthenia gravis. The blood test came back negative. He said he still believed that I had MG and put me on an additional medication to treat MG. That was three weeks ago. The new medication is not helping or improving. I went to see a Ophthalmologist and My prism is now over 6 diopters. My doctor swears it could not be the Keppra and refuses to take me off of it.. I really feel it is the Keppera. Just a feeling Any advise?

Myasthenia gravis
 

I'm new on here and don't know how to start i have just been diagnosed with this rate condition Myasthenia gravis my neurologist is not much good to be honest , I have had a number of tests to find out that I MAY have this condition , I also suffer from dizziness ,feeling tired and want to sleep all the time I can have a good night sleep but wake up as I have had no sleep at all .
I also suffer from NF 1 and have had Neurendocirine cancer 2 times you can say I'm a walking medical book for doctors .

I need as much help as I can get on Myasthenia gravis so if anyone can help I would be grateful .

Hi The Chef

Welcome to NeuroTalk :).

Myasthenia Gravis is an autoimmune disease. That means that your immune system recognises normal body proteins as being foreign in a way which is similar to if you have a bacterial or viral infection.

The specific normal body proteins which are involved in Myasthenia Gravis are naturally found at neuromuscular junctions. Two of these are the acetylcholine receptor and the MuSK protein.

There is some general information about Myasthenia Gravis here Myasthenia Gravis Fact Sheet | National Institute of Neurological Disorders and Stroke .

This forum is very active. Its "Sticky" threads are worth reading and also if you share your story there you will get support and good ideas from other members.

All the best.
__________________