Hello, my name is Anna and I'm currently not diagnosed with anything. Here's some history.
In 2009, I began having fatigue and migratory joint pain. My doc thought I might have had RA or SLE but he wanted to rule out other disorders first. I had a Colonoscopy/Endoscopy in December of 2009 and found out that I had Gastritis. Everything else was fine so he referred me to a Rheumy. I was tested for both RA and SLE from 2010 to early 2011. My Rheumy informed me that my Anemia was getting worse which was news to me, I didn't even know my iron was low. He felt that the Anemia might be the cause of my joint pain so he sent me back to my doc. For some reason, the joint pain stopped on its own in mid-2011.
I had a couple months without any fatigue and joint pain until a week before Thanksgiving when I could barely move because of muscle weakness. By December, I was walking with a cane, having difficulty climbing stairs and lifting my arms, my jaw would become weak making it hard to chew. The new year brought more problems. In January, I began having shortness of breath on exertion. My voice started changing in February. My doc informed me that I needed to go back to the Rheumy because my SED Rate was high. The Rheumy said it was elevated but not extremely high and that my muscle weakness needed to be looked at by a Neuro so he referred me to a Neuro-Muscular specialist for an EMG and Nerve Conductive Study. Both came back normal.
In March, I went back to my doc for a routine check-up. I informed him about the EMG and everything and discussed my shortness of breath with him. He did an EKG and PFT, both came back normal. He did another round of labs, checking my AChR and CBC. My AChR came back normal. Unfortunately, my iron's low again.
I had my initial consultation with my Neuro in April where we discussed my symptoms and new issue - difficulty swallowing. It was at that point where he mentioned MG. I was a little confused by this. I thought the "hallmark" of MG was droopy eyelids and double vision, which I don't have. He informed me that there's a small percentage of people with MG that don't have ocular weakness. I told him that my AChR came back normal so he's testing me for MuSK. He said I could still have MG, seronegative.
I saw my appointment Neuro today - MuSK antibody test came back negative. I'm not officially diagnosed with MG but he called in a prescription for Mestinon to see if it works. Last month he checked my reflexes. My ankles, knees and wrist reflexes were strong. My bicep reflex on both arms was "diminished". He checked them today and now not only are my bicep reflexes "diminished" but my knee reflexes are as well. He looked at me concerned and asked me what had changed this month from last month. I told him that my arms died on my April 28th. I couldn't use them, my wrists or my hands for about an hour and 20 minutes. I told him that last week my tongue felt "heavy" and then it happened again on Monday. I also informed him that the muscle weakness is beginning earlier in the day and it's getting worse.
He told me to take the Mestinon and that he's going to schedule me for an MRI. If the Mestinon doesn't work then I don't have MG. If the MRI comes back fine then he's sending me to get a muscle biopsy. So, right now I still don't know what's wrong. I'm picking up the pills tomorrow afternoon. They had to order some cause there wasn't any in stock. I'll start taking it Saturday because I have to take the pill 3 times a day.
I'm exhausted. I don't have any energy to do anything. Everything's too heavy. The parts of me that are affected are my jaw, tongue, voice, throat, neck, legs, arms and shortness of breath. Sorry this is so long.