No more Myasthenia gravis???

[meirish]

Went to my new neurologist for EMG testing today and I show no signs of myasthenia. What a surprise. This has been a rough year so far with the Gross hemmorage in January and 9 units of blood. Then several weeks later had norovirus and that knocked the socks off me. In April had hgb of 7.6 with resultant over nite hospital stay (hgb down then to 6.9 and one unit of blood. Then had 2 iron infusions over several weeks. Then came the Covid in June. My HGB was between 7.6  and every number under then sun until end of May with had a 9.0. Then in July I had two 12.3 hgb and made it into the normal range.

With all this weirdness going on with my body I really had no clue how I really felt except huge fatigue from the covid. Also kidney function decreased so IVIG last dose was May 5th and Metformin was discontinued about a month ago due to low kidney function. Hang in there I am getting to the point of this story. With all this going on I told docs don't ask me how I feel cause I can't explain any of it.

I was put on Pazlovid for the covid and began researching this drug. I wondered if it was affecting my autoimmune diseases. I knew that it would be hard on my kidneys and they started to improve some. I have still been suspicious of this new drug as I saw a new rheumy and she did a bunch of autoimmune blood work and it was all negative. This has never happened to me before.

Now, I still don't feel great and have a lot of neuropathy and body aches, but not nearly as bad as it was months back. I also wondered if the shock of the bad hemorrhage could have affected me. I hemorrhaged 3 times in 22 hours and they managed to keep me alive all these times before the found the area bleeding in my duodenum and fixed it. So the severe shock during this time plus having all that new blood made me wonder. I basically had all new blood in my body. Then add the other bleed with one iron infusion and 24 hours later a blood transfusion....I felt lousy after this and don't advise it if you can avoid it. I refused to take the 2nd iron infusion for 10 days til I felt better.

Then add the covid and the Pazlovid. I am interested to hear if any of you can find research about this new drug and its affect on autoimmune disease. Just seems really suspect that the negative tests would all take place all at once like that. Time will tell. Neurologist said no more IVIG and that I could take my Mestinon for weakness as I needed it if it helped but if I had increase in general overall symptoms to come back. I told him maybe I would die healthy. That was a joke. Thanks for putting up with this long story. You all know by now that I am long winded. Hugs all. meirish

[jazzlover]

That's amazing. I hope you will keep improving!

Sometimes I think testing is not all it's cracked up to be. I guess time will tell!!

[meirish]

I called and talked with the nurse at my infusion center and she was really upset. I was diagnosed at this center by a very popular and good immunologist back in 1006. I had all the physical signs of the myasthenia gravis but not the one positive blood work. I did have another blood work that was extremely high that often was part of the MG diagnosis.

The nurse at the infusion center called my back the next day to tell me that she had gone down and pulled all my old paper records and looked up all my blood work etc and other info. She was still upset. This is a very iffy situation with the new neurologist as when I first saw him he told me I had to come to his infusion center and I refused. I had told this clinic that I wanted to stay at my present infusion center as I was 79 years old and knew the roads to get there and it would save me a lot of stress and grief. The doctor was not happy with me. I asked him to "humor" me in my old age.

In the mean time my health became worse and kidney function was worse so doc had to put my IVIG on hold. I am still in a holding pattern with my health. Last couple of visits he is still trying to get me to come to his clinic and I had still said no. The nurse at IVIG center and I have come to the conclusion that he is trying to get rid of me as a patient. This makes sense as even though he told me I don't have MG he told me I did have it originally and that I was to still take my Mestinon for my weakness and to get my primary to order my prednisone. He told me to come back if I get worse.

So, Ii am still having weakness in muscles that needs more medicine and my left eye is usually droopy at nite. A symptom I have had since 2006. To day the least this has been upsetting to me as supposedly this is a good neuro center and my neuro of 15 years had referred me there. I had moved up here a year ago and am having to replace 8 specialists and it has been very hard. Covid has really upset the medical system as we all know.

Thank goodness I have the nurse from the clinic where I originally went and get the IVIG cause she told me to keep in touch and informed of info regarding what happened when one quits IVIG.  Now I have to search for another neurologist. There are more things medically going on that has been a trial getting sorted out. But, thankfully as with autoimmune disease I have some other autoimmune issues and diseases that have not given me problems lately. That is the way it is with all these issues. Thanks for listening. meirish

I remembered that I had asked a manager at the clinic if I needed to have my IVIG at the infusion center and she said "no, I could have it wherever I wanted". Interesting.

[susanep]

Irish did you have the covid virus?
susanep

[meirish]

Yes. This year I have had a bad GI bleed with 7 days in hospital and 9 units of blood in about 24 hours. Then I had Noro virus and that set me back quite a bit. That was in March and then in April I was in hospital for hgb down to 6.9 and had one unit of blood. Had 2 IV iron infusion in the next 3 weeks. Then In June I had Covid and was given the new drug Pazlovid to keep me from being so sick.

My hgb was also very low from about last Dec until end of July when it was up over 11 and then a few weeks later was 12.4. ( Frequently in the 8 and 9 area) It has been 12.4 the last couple of times and that's about the highest it ever gets for me. Lets just say I have felt pretty lousy this year and have wondered if this has screwed my body up enough to screw up all my blood work including the autoimmune. We all know that stress can affect the autoimmune issues.

Thanks Susan...glad to see you here. meirish