If I am the only person you know with MG, you probably have a skewed view of what it’s like. Most people don’t have the broken voice and most people get proper medical care, so don’t look as bad as me right now. Each time I go to a real live support group meeting, I look around the room and think…..these people have MG?
When I was getting regular IVIg, I could still walk and talk. Remember that? I could garden. I could drive a car. I could cook elaborate meals. I could go to church every Sunday. I could do a few fun things here and there.
Besides the lack of IVIg, I just had to be one of the “lucky ones” who got bit by mosquitoes that were harboring West Nile Virus….and now I have WNV, too. And then there are all the years that I got diagnosed with one autoimmune disease after another. It must be a lot easier to only have myasthenia gravis!
Even if that were my only chronic illness, MG would suck.
Common symptoms can include:
- A drooping eyelid
- Blurred or double vision
- Slurred speech
- Difficulty chewing and swallowing
- Weakness in the arms and legs
- Chronic muscle fatigue
- Difficulty breathing
- Acetylcholine Receptor Antibody— a blood test for the abnormal antibodies can be performed to see if they are present. Approximately 85% of MG patients have this antibody and, when detected with an elevated concentration the AChR antibody test is strongly indicative of MG.
- Anti-MuSK Antibody testing— a blood test for the remaining 15% of MG patients who have tested negative for the acetylcholine antibody. These patients have seronegative (SN) MG. About 40-70% of patients with SNMG test positive for the anti-MuSK antibody. The remaining patients have unidentified antibodies causing their MG.
- OfficeTests—Sleep, Ice Pack and Edrophonium tests are examinations performed by specialists to evaluate an improvement in strength that may be consistent with MG.
- Electromyography— (EMG) studies can provide support for the diagnosis of MG when characteristic patterns are present. Repetitive Nerve Stimulation is used to check for a pattern of response that is characteristic of MG.
- Single Fiber EMG— studies can provide support for the diagnosis of MG when characteristic patterns are present. The single fiber EMG and AChR antibody test are primary tests used to confirm a clinical diagnosis of MG.
Sometimes all of these tests are negative or equivocal in someone whose story and examination still seem to point to a diagnosis of MG. A clinician skilled in recognizing MG and distinguishing MG from other conditions would need to determine if such a patient has MG or another disorder.
A woman in one of my groups made this video last night. Looking at her and looking at me, you would never guess we had the same chronic illness. Remember how much younger, perkier and more alive I looked in the pic I took the last day of February? That’s thanks to IVIg. It’s totally NOT necessary for me to be physically struggling the way I am now. I look awful in my videos this week 😦 That’s MG without any medicine. And…..how I look or sound isn’t the story at all…..it’s how I feel. The weakness and difficulty breathing can only really be felt by the person inside the body.
I just got back from seeing my GP doc. All he could do was shake his head when he heard about the prehearing, the shenanigans with switching docs who will do the SFEMG test, etc. He must have told me a dozen times that he wished he could cure me. After I told him about the people in the hearing trying to say I don’t have MG, I have conversion disorder, the doc started hugging me. That had me fully sobbing 😦 I can be brave until someone shows kindness, pity or empathy, then I fall apart. I felt like such an idiot, sobbing while he hugged and tried to soothe me. I was given another Medrol dosepack for after the SFEMG test. I will just take Mestinon first, see how I feel, then, if needed, take the darn Medrol.