Jyoti Posted November 25, 2022 Report Share Posted November 25, 2022 5 hours ago, MikeO said: I did send my doc a message questioning why Mestition is working is working for me while it does not for most folks. I'd be curious to hear what you learn @MikeO. I have had basic antibody testing done--ANA positive, speckled pattern. The others, including all acetylcholine receptor antibodies negative. So...go figure? What about you? Quote Link to comment Share on other sites More sharing options...
MikeO Posted November 25, 2022 Author Report Share Posted November 25, 2022 I will let you know what i find out @Jyoti. No i have had any antibody testing done yet. May take a bit of begging on my part but i am sure i can get some testing ordered from my PCP. For now i am still confused as to what to ask for. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted November 26, 2022 Report Share Posted November 26, 2022 22 hours ago, MikeO said: For now i am still confused as to what to ask for. Here's what I have had tested, for what it's worth: ANA (Anti-nuclear Antibodies IFA) Sjogren's Ab, Anti-SS-A/SS-B Acetylcholine Receptor AB, All Paraneoplastic Autoantibody Eval. As well, I have been tested for Rheumatoid Factor and C-Reactive protein. I don't know if this even approaches being a comprehensive list of tests for autoantibodies, but it might be a good start? At least something to look into.... Quote Link to comment Share on other sites More sharing options...
MikeO Posted November 27, 2022 Author Report Share Posted November 27, 2022 16 hours ago, Jyoti said: Here's what I have had tested, for what it's worth: ANA (Anti-nuclear Antibodies IFA) Sjogren's Ab, Anti-SS-A/SS-B Acetylcholine Receptor AB, All Paraneoplastic Autoantibody Eval. As well, I have been tested for Rheumatoid Factor and C-Reactive protein. I don't know if this even approaches being a comprehensive list of tests for autoantibodies, but it might be a good start? At least something to look into.... THis is good....Thank You!. BTW i just stopped my Mestition today do to coming down with a cold (I hope) last night out of the blue my nose started running really bad and was sneezing pretty good too. Then the respiratory symptoms kicked in (reason for me to stop the med) i was up all night coughing and with the chills. Like usual had short run feeling good just to be shot down Haha. Sure i will get back on track. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted November 27, 2022 Report Share Posted November 27, 2022 57 minutes ago, MikeO said: Like usual had short run feeling good just to be shot down So sorry. It does seem that way, doesn't it? We get a foot up and then whatever it is we thought we were standing on dissolves under us. I take hope from people like Pistol who seems to have found some stability through long trial and error. I hope that for you too! May your cold pass soon. Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 4, 2022 Author Report Share Posted December 4, 2022 On 11/25/2022 at 5:09 PM, Jyoti said: I'd be curious to hear what you learn Well i did ask and that went crickets. For now i need to keep my thoughts shut. I still do not feel well but saying that i am not happy with the differ/decline responses i have gotten. I did restart the Mesition saturday (low dose 15mg x 3) it does make a difference. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted December 5, 2022 Report Share Posted December 5, 2022 4 hours ago, MikeO said: Well i did ask and that went crickets I had the same experience. It is frustrating and sometimes worse. Do you have ME/CFS as well as dysautonomia @MikeO? I think Mestinon is doing something for my ME--and I am taking exactly the same dose you are--but not sure about the POTS/NMS. I don't understand why since I have no antibodies related to acetylcholine that I know of..... But, it works (or I should say--it is working for now) so I am going to keep taking it, like you. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 5, 2022 Report Share Posted December 5, 2022 @MikeO I'm so glad to hear you are feeling some positive effects! I am going to give Mestinon another try after I've had my albumin infusion. (I was supposed to go today but I was a bit under the weather and had to change to Thursday.) Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 5, 2022 Author Report Share Posted December 5, 2022 13 hours ago, Jyoti said: Do you have ME/CFS as well as dysautonomia No i do not have ME/CFS but have wondered at times if this is not the case with me. I swear just getting thru the day is a chore (feels like i am pumping molasses). I did ask my specialist to test the acetylcholine antibodies but was declined (i need to take a deep breath and count to three before i say something i will regret). Glad you are continuing with Mestition. Like you kinda mentioned i do also wonder if this will work forever or peter out at some point. @Sarah TeeThank You! I have my fingers crossed that the albumin infusions works for you. Hopefully the infusions and a re-trial of Mestition will be the winning combo. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.