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Feb 14, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

Hello @mylife, thanks for telling me about the Pyridostigmine. Now I don’t have to ask my doctor about why I’m not taking Mestinon like many of the Mayo people are. He put me on two drugs, I think, because my numbers were so high. I had another blood test done yesterday and will find out next week how they are working. He said this Pyrid., will act like an aspirin and give me relief from some of the symptoms in a couple of hours, but won’t last. The other medicine will take a few weeks to start working and hopefully will be long lasting. My eyes are better, and my incontinent problems are better too. I’m still wobbly while walking, and my neck muscles aren’t much better. I’m impatient about all of this I know and want it gone now! I’m so sorry to hear about your husband being gone. I know how important it is for me to have mine to help me and keep pushing me to move more. Good luck with your muscle test. I got my results right away…..right after the test the doctor went into another room and brought back the print out of how bad I did. Better luck with yours.

Feb 11, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

Hi all, I had my chest x-ray last week and I don’t have to worry about my Thymus gland….it’s not enlarged. I’ve been taking meds for almost 3 weeks now and my eyes are better. The drooping is almost gone and the distorted vision is better, but still not great. So far, I do not have trouble swallowing, but do have some trouble chewing hard things. My biggest problem is the head drooping forward. My neck muscles are weakened and don’t seem to be getting better. The doctor keeps telling me to be more patient as it takes 4 to 6 weeks for the meds to really kick in. I’m having a blood test next week to see if there is an improvement in whatever those little thingies are that are causing a problem. My meds. are Pyridostigmine 60mg 2 times a day, and Azathioprine 50mg 2 times a day. Anyone else taking these?

Jan 31, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

I’ll have to ask my doctor about the Mestinon your on. I’ve only taken a couple days of these two drugs and so far, don’t mind the side effects……but one of them gives me the runs in the early morning after breakfast. As for the water exercise I do, they’re not very aggressive. My husband goes in with me, and we do them together. I’ve used a cane for a year now because of my wobbly legs and imbalance problems. At least with this diagnosis, I now know why my body does these things. I’ve been giving myself permission to take a nap every day for a couple years too. I nap for a couple hours in the afternoon and that gets me through the evening hours.

Jan 30, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

Hi @mylife, this sounds exactly the way mine began. It was in Dec. 2016 that the double vision started. What is really strange about all this, is that my husband had the double vision about a week before me! His cleared up in a couple of weeks, while mine took about a month. We both went to our eye doctor but he couldn’t figure out what the problem was. Mine occurred again two more times…again the eye doctor couldn’t say what was causing it. Then in Nov. 2017 the drooping eyelids began along with the vision problems. I went to my GP who thought it might be 6th or 7th nerve palsy, but wanted me to see a neurologist for further examine. After the nerve/muscle test and the blood test, he diagnosed me with MG and I just started the pills. My right eye has been good for a couple of weeks, and my left eye is coming along too. Hopefully now that I’m on these pills, my neck/head drooping and pain will subside too.

Jan 30, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

I’m seeing my neurologist on Friday and I’m going to ask about my Thymus gland also. I had a chest X-Ray done in late October 2017. I wonder if the thymus gland would show up on that…..

Jan 29, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

My blood test showed the acetycholine recptor …I think it’s called….at 254 when it should be at 0.3…..the doctor said it was way too high….hopefully the new pills I started today will help with this…..I’ll have another blood test next week hopefully with better results….

Jan 29, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

Hi all….well I finally have been diagnosed with MG…the blood test showed the problem. I started on two different drugs today and the doctor seems to think they will help. One is Pyridostigmine, 60mg 2 x day…..and Azathioprine, 50mg 2 x day……The doctor will do blood tests to see if the drugs are working and of course, by how I’ll be feeling. He seems to think that by the time I see him in another week, I should feel better just by taking the Pryidostigmine. He says that is a fast acting drug. The other drug may take some 6 to 8 weeks to show improvement. My neurologist says I can probably improve my muscles with exercise, so my husband and I have joined the “Y”. I don’t want to do the machines in the GYM, so we are doing exercise in the pool.

Jan 27, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

I’ve been quiet for a while because I just don’t want this…..and maybe I don’t have it. Anyway, I did have the muscle/nerve test and didn’t fare well. Now I’m waiting on the results of a blood test. I should get it on Monday 29th. My neuro doctor says you can have MG without the normal symptoms too…..just great! I can’t drive yet as my left eyelid keeps drooping. My right eye seems to have corrected itself nicely though. My husband has been really great about driving me everywhere. Does a headache go with this disease? I seem to get them lately along with my drooping head……oh so weird!