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I know there is so much more being discussed on this thread, but I want to echo how, in my opinion, it is so important to find a neurologist with a specialty in the neuromuscular subgrouping of neurology. It was a night and day difference between the first neurologist I went to who, honestly, didn’t seem to have a lot of experience with MG to the 2nd neurologist who specializes in neuromuscular area. The experience was completely different in a positive way. I feel really lucky to at least appear to have found a good fit on the 2nd try. I know others have struggled for a lot longer to find a good match. Mestonin was not effective for me with my ptosis and diplopia symptoms, but so far, Prednisone, 20mg per day, is working really well. I know its not a permanent fix, as long term use has some pretty negative side effects. But, discussions were opened addressing this before leaving my first visit with my new neurologist, with the longer term goal to taper off steroids and move to a non-steroidal solution. I know that will take a while.
I am very early in my diagnosis (4 months) but at 61 years old, I know that this can get much worse. My process actually started in 2019, resulting in a mis-diagnosis and 2 strabismus eye surgeries that have ultimately ended up unnecessary. Thankfully, the procedures I have had do not seem to be affecting long term prognosis, and upon follow up consultation with eye surgeon, are completely reversible.
Another thing I want to mention. I have added to my treatment approach a total diet change. I consulted with my PCP and neurologist about this before starting, to make sure what I was doing had no adverse affects on treatment and outcome. I am giving a trial run to following the Lectin Free diet plan created by Dr. Stephen Gundry. (Moderator: if endorsing a book or diet plan is not allowed on the forum, please advise and I can retract the verbiage). He talks about how following this plan can have dramatic reversal of impacts of numerous autoimmune diseases. I know that this is not for everyone and I personally would probably not recommend it unless you are experiencing some health related issues and challenges. But after to being on it for about a month, I have noticed a dramatic improvement in overall health, I have lost a good bit of weight despite being on the prednisone, and I think it is working well to support the effectiveness of the medication I am taking. Think of it as a more restrictive Dr. Weil type of anti-inflammatory diet. Lots of restrictions, so its a tough transition. Also, it requires a lot of meal prep and sourcing from good, organic sources, so it can be a bit expensive. But I am finding that the costs are offset by buying less groceries, getting delivery and take out less, as they aren’t allowed (I am still not doing dine in due to Covid lingering), so that seems to be a wash. But it does take a bit of time to get into a rhythm. I would encourage at least checking it out. Plant Paradox by Stephen Gundry.
Love this site and all the fantastic information, the sharing from others of your experiences, and I come away learning something every time on log on. Thank you all for your stories, comments and contributions! Take care.