Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Ok. I’m new and I know I have MG. I just now put it all together that I’ve had this for years and all these things that bring on or make MG worse I have had. Not knowing I had this and that all these things made it all worse. I just took Amitriptyline last night and all my MG symptoms got worse. I felt my left eardrum open and close and my drooping on left side of face and eyes is worse. My vision is super blurry and doubled today. I can’t smile or move my face much.
I first noticed MG symptoms years ago when I took klonopin for anxiety, cyclobenzaprine, and protonix for acid reflux. Then it got a billion times worse when I was prescribed Cipro which also caused neuropathy and has made me super sensitive to anything with fluoride. So I have been struggling with fluoiride toxicity symptoms, neuropathy and MG. Then MG symptoms got worse again when I was prescribed ampicillin. This caused severe respiratory, muscle weakness, shortness of breath and a lot of gastrointestinal problems. Then MG got worse when I was prescribed another antibiotic Xifaxan and Zantac as well as going back on klonopin. Then the anaesthesia and lidocaine mouth spray for upper endoscopy almost killed me from such a bad reaction that landed me in the ER where I had a CT scan with iodine contrast which almost killed me and left me with red, burning, tingling skin and tingling and burning mouth and tongue. Then my dentist gave me a mouth rinse for my burning, tingly tongue that had lidocaine in it! Then I took protonix that had fluoride in it further adding to my fluoride toxicity. Then I had lidocaine injection for skin biopsy and took more protonix. This left my skin burning red, itchy, sensitive to touch and facial muscle weakness and pain. Then my Naturopath had me take GABA and magnesium citrate. This took the cake. The worst facial pain and beginning of eye blurred vision, double vision, and floaters. Then psychiatrist put me back on klonopin which made me worse. Then GI dr put me on antibiotic and protonix and this made me feel like I had a stroke and messed up my blood flow to my brain and made it feel numb with tons of pressure. Then I took more klonopin and felt poisoned. So I just tried Amitriptyline and feel a zillion times worse. Such muscle weakness everywhere i can barely lift my arms. Food is not moving through my digestive system. I can barley talk or swallow. I have no voice. I have so much pain in my jaw and under jaw. I feel like I have a lump in my throat and neck. My hair is falling out. It must have messed up my thyroid. I don’t sweat anymore I have no oil or moisture anywhere.
The only doctor in my area Buffalo, NY isn’t taking anymore patients. I’m at a loss. I feel like this is too much and I’ll never get better. I’ll never find a doctor who can help. My PCP, GI Doctor, psychiatrist, neurologist All think I’m a hypochondriac. My marriage is failing. I can barely work. I can’t taste food, sleep, relax, I’m devastated.
Sorry to hear all of the problems you are having. Most of us who get diagnosed with MG have some difficulty getting the diagnosis and getting in to see a neurologist. Some of us go to an eye specialist for double vision and drooping eyelids and that person makes the initial diagnosis of MG>
My eye doctor did an icepack test for one drooping eyelid. He had me hold an icepack to my eyes for about 2 minutes and then take it away. My droop went away for a few minutes. He said that was 85% likely to mean I had MG, and then he ordered the blood test for MG and told me to schedule a neurologist appt. I had trouble getting an appointment earlier than a few months away. When my blodd test came back positive for MG and my symptoms were getting worse, I pushed the appointment desk and they said if I would start by seeing a resident neurologist (one in training) that would be quicker. He did a long evaluation and then had a staff neurologist come in for a short visit. That got me into the clinic/hospital and got me an early appointment and on treatment. It helped that the eye doctor ordered the MG ACHR blood test first.
Good Luck
Russ