Tim Lindsey

Trazadone is very affective and safe for MG patients according to my PCP & Neurologist.  Works great for me.

TL

Makes very good sense, Theresa.  MG and other autoimmune conditions don’t react in normal ways to infections or inoculations.  So hard to figure out what to expect and find the best way forward many times.  I’ve often wondered if my Shingles Vaccine a couple years ago activated a dormant MG in me.  It was about a year after that that MG hit me har…[Read more]

Stroke-like symptoms Sep 4, 2020… Sent home to recouperate.  Problems got much worse within 3 weeks, brought back in for Nuero blood work… Told I have MG on Sep 25th.  Thankful for quick diagnosis.  I know with many, of had taken months, even years.

I take a bunch…
Vit D, E & C
Fish Oil
Zinc & Quercetin
& Low Dose Aspirin

All except Quercetin recommended by my pharmacist team.   Don’t know of any that particular help with MG issues, but thankful I’m staying healthy and getting through a dangerous winter flu season.

• Very glad that my Rx is sent thru US mail from VA Health.  Great benefit since it would mean so many trips to the pharmacy. Most of the prescriptions are 90 days as well, which makes my Pryodistigmine & Mycophenolate packages pretty large.

Interestingly, an autoimmune researcher suggested one reason…  “With rising awareness, humans have created more sterile environments around themselves, especially in developed countries. The immune system of growing children in such countries do not get exposed to enough bacteria (both, good and bad) and is thus more likely to act up.”

This…[Read more]

I pretty much echo CRAIG’S response. Very confusing situation.  I have very active MG & am on immune-suppression, but at 70yrs I am too old to hide away, lock down & let this bug get me depressed or fearful.  I have 1x Moderna – got a MG flare from it & didn’t want the 2nd.  My wife is unvaxxed & got covid last year – suffered like many at home fo…[Read more]

Ronald…

I have generalized MG, diagnosed only a year ago.  I have been using a CPAP for apnea for 12 years.  After MG hit me hard last year, my breathing was very much affected.  I still struggle with breathing through my nostrils  The only thing that allows me to get any sleep at night is the help of my full-mask CPAP.  I don’t even take a na…[Read more]

Amy… I just finished 30+ dentist visits with way too much Novocain and drilling, etc., for a palatal lift to help my MG weakness. I got stronger throughout my ordeal because of my treatment program and did not see any added weakness due to dental work. I had a bridge replacement, tooth pulled, crowns redone, and a lot of mouth stress over 9…[Read more]

Courtland…  I completely understand the mumble-mouth problem.  That is my first MG difficulty. I also speak for a living (pastor) and have to ration my words to get through a 30 minute message.  I have cut back in many areas to accommodate.

I am on a pretty aggressive therapy….  8 or 10 pyridostigmine/day, immune-suppression, and 2 day IVI…[Read more]

Hello Stephanie…

Thank you for posting on here. Every story is different and interesting. I have a couple questions. First, how did prednisone affect your mental status? Secondly, why did you reduce your Mestinon? Did your symptoms fade?

I’m one year into my diagnosis and have been on Mestinon from the beginning. After some weeks and worsening…[Read more]

Lou… Thank you for your note & encouraging. I believe you are right… I certainly won’t miss the vein IVs. The IV team at Roudebush is excellent but was about to tell me they couldn’t service me anymore. The port install is healing fine.

I will likely be on a 3 or 4 week schedule for IVIG for a while.  Also, when I need to do blood draws, I…[Read more]

Hello Rina,

I can sympathize with you about the problems of heat. I live in central Indiana, USA, and our heat in summer is similar to yours.  I also suffer from small doses of it.  I’m glad you have a pool to relieve and refresh yourself. I retreat to the AC or shade. I work outside or golf in the mornings or late afternoon. I’m thankful to be a…[Read more]

Hey Ronald…   Your regimen similar to mine, except no prednisone for me.  BTW… IVIG is a big boost for me, too.  I don’t like the chair – 2 days every 3 weeks for me, but I can really tell the difference afterward.

Sorry for confusion – by ‘cheating symptoms’, I meant that I sometimes go out in hot sun when I know better hoping for a good res…[Read more]

Ronald… what medicine therapies are you on?  How much have they helped you since diagnosis?

Sorry for all your pain and discomfort.  Sounds like every day is a real struggle.  I am blessed with mostly good days now.  My rough days come when I ‘cheat’ or ignore the triggers.

All the best to you & yours.

THANK YOU, Jodi, for your comments about Mycophenolate.  I am in my 9th month of use at 1500 mg/day.   I have had no adverse reactions to it, but always appreciate warnings and follow-up info.  The point about increased cancer risk is certainly worth investigating.  My neurologist really wants to avoid steroid use for me, so this is his choi…[Read more]

RICK FEDERMANN … You are so correct about the short attention span of folk. Even those who really care about me and want to help need a lot of re-education.  I sometimes resort to a frequent movie line, “it’s complicated”.

My wife asked me a few times in public at first how I was doing, do I need a break, etc..  Thankfully, we came to an u…[Read more]