I am overwhelmed and exhausted and have nowhere else to turn... I don't even know if any of these thingss are related, it just seems a never-ending battle.... but Myasthenia Gravis has now been mentioned to me three times, so I thought I'd ask here. I'm including all the details because maybe someone has some insight or can put the peices together or help point me in the right direction. I've been fighting major upper body pain & exhaustion for the past two years.

I had two kids, born 11 months apart. They are 6 & 7 now. Relatively healthy second pregnancy, but the first I did have some major issues with pre-eclampsia. Both babes are very healthy. I was pregnant for almost 18 months straight, which was not kind to my body.

In 2009 I got Mono very badly, ended up hospitalized and then got shingles. Painful, but nothing as bad as what was to come. About two weeks after the shingles broke and started to go away, I had a very odd symptom of just one part of the right side of my face becoming paralyzed. Three different docs tried steroids, various meds and tons of tests. They thought maybe bells palsey but it wasn't definitive. It mainly affected the muscle that pulled my right eye out, so for about 6 weeks I had crossed-vision. Eventually, it just went away and my horrible primary doc only had "well, let's just hope it doesn't come back" to say. Nothing showed up on multiple MRIs or in blood tests. They did think maybe Myasthenia Gravis, but I don't produce that antibody (though you don't have to, to have MG from what I read).

I was relatively healthy for the following 8-9 months, except that it seemed I had major immune issues. I caught anything the kids caught, if anyone in the office was even remotely ill I would catch it within a day. I even caught things that my friends kid's had, without being exposed to the kids, just their non-sick parents.

I started having the upper body pain about 2-3 years ago, I've lost count. After lots of PT, nothing showed up on X-rays so we did an MRI. One doc said he saw nothing, but a spine doc said he saw a "potentially" damaged disc at C5-C6, in that it lost some of it's mass, but maybe only 20%. 2 doctors say yes they see it, 2 say no. They all see bone spurs and arthritis in my shoulders and neck, but all of them say it shouldn't take dilaudid to get rid of my pain. And frankly, that's one of the few things that works.

The pain is downright unbearable sometimes. I've done multiple injections of steroids and pain releiving drugs straight at the nerve roots. They would help a little, but never completely. In Oct 2011, I saw another doc who decided it was carpal tunnel and medial nerve entrapment. Surgery, of course, and while that took away a lot of the sensitivity and all of the "tingly/pin-prick" feelings in my hands, it didn't take away all the pain.

They've basically put me on a rotation at the pain management clinic. Every 30 days, I go back and get more narcotics. I hate them. Tramadol has been helpful, because I don't get the "high" feeling and I can work... but it's starting to not work now. I've gone all the way up to dilaudid, and back down to tramadol with nucynta when it gets really bad. It never takes things away completely, but I've pretty much compeltely resolved that it's never going to go away 100%. I was on topamax for about 2 weeks and it was wonderful. All my pain and exhaustion went away... but I turned into a box of rocks who ate & drank nothing for those two weeks. MAJOR brain fog, which scares me because I have two little kids to take care of. So, off topamax, back to tramadol and nucynta. My primary care doc thinks maybe fybromyalgia, because topamax worked so well. Pain management/spine doc disagrees.

I'm at my wits end. I'm in so much pain. Some days, I could sleep 12 hours and still be exhausted. Some days are fine. It seems like a constant rollercoaster of flare ups and calm downs. A lot of the time the pain stems from my right shoulder blade (around the cusp of it, closest to my spine) and that seems to be the epicenter of pain. Goes majorly into my shoulders and down my right arm. Elbows and wrists are major pain points, and right hand aches so bad too. I have good days and bad days. Today is a bad day. Pain is basically all over my upper body from my bossom up. Headaches are regular. Tramadol not touching it.

Please help. Any thoughts or pointers or a place to start reading? I've googled my brains out and I just want a definitive answer. I've considered seeing a rheumatologist, that's the only specialist I haven't seen so far. What doctors specialize in MG?

Sorry this is so long. I'm just hurting so bad and am so tired of just having pills thrown at me.
Thanks in advance for any advice
-Kaura
31 y.o. mom to DS7 & DD8

Hi, Kaura. I'm so sorry to hear that you've had to endure constant pain for so long, and without a diagnosis.

The hallmark of myasthenia gravis is muscle weakness that gets worse when you use the muscle. MG often starts in the eyes, causing drooping eyelids and double vision like you described. Then it usually becomes "generalized," which means it spreads to the rest of the body too. Typical symptoms of generalized MG in the beginning are things like having trouble getting out of a chair without using your hands, or having trouble holding up the hair dryer when you dry your hair. Some people also have trouble breathing, talking, chewing, or swallowing, or trouble holding up their heads.

If you read lists of MG symptoms, you won't usually find "pain" included. It is true that a lot of people on this list have pain. But I don't think any of us have only pain with no noticeable specific muscle weakness. The weakness is the primary symptom, because myasthenia interrupts the communication between the nerves and the muscles. They call it "weakness," but it's more like partial paralysis.

If I'm reading you correctly, you don't have any symptoms on the typical MG list (your eye problems have been gone for several years, right?) I'm glad you posted here, though. There are a lot of incredibly knowledgeable people here, and maybe someone can suggest another disease to look into.

I hope you get relief and answers very soon, and I'm counting my blessings today, because although MG really affects my life, I'm not usually in pain. So thanks for the reminder that I have a lot to be grateful for.

Abby

Does the pain feel muscular? If so, there is a rare disease called Stiff Person Syndrome that prevents the muscles from relaxing. There's a test for GAD antibodies that can be used to confirm it. Keep in mind that it only affects 1 in 1 million, but I would still ask the doctor to run the test and rule it out, if nothing else.

Hi Kaura, Hopeing this is an easy night for you.
I have a friend with this and it is not pretty. I just wanted to send a smile and a whisper of hope. I am new here but find it to be a very informative and compassionate gang. Please know you are not alone, and prayers going up for you. Your sister in pain, Andrea. RSD from Mars with LUV.

Hey Kaura,
I am sorry to hear that you are in so much pain. I would certainly go to a rheumatologist. As far as the type of doctor that treats MG, neurologists do.

Thank you everyone. I guess I did not mention that I do have extreme muscle weakness... even in my dreams at night (when I do sleep), which is crazy. I always feel very weak.

That said, it doesn't sound like MG, just because of the huge amount of pain and it being so localized. I'd say maybe 60-70% of the time it is really my upper-right quadrant of my body... shoulder, neck, arm, back-all on the right side.

Thanks again for all the support... will keep searching.

I know this sounds crazy, but has your gall bladder been checked? My sister had terrible pain in her right shoulder, arm, and back, all on the right side. When she had her gall bladder out, it all went away. Her doctor said that the pain was caused by the gall bladder all along due to referred pain.

Kaura, I just wanted to mention that it's pretty common for people with MG to test negative for the antibodies at one time, and then positive later on. This is especially common if the first test is given when the patient only has eye symptoms. So if you and your doctors decide MG is a possibility, don't hesitate to have another blood test.

Abby

I would look into Thoracic Outlet Syndrome (TOS) or Chronic Regional Pain Syndrome (CRPS) or Refex Sympathetic Dystrophy (RSD). I agree that you do not have classic MG symptoms although it is certainly possible to have more than one malady.

Good luck.