[Bill Wheeler]

Get a new Neurologist! Can`t PCP recommend someone?

[Bill Wheeler]

I had loose stools for 3 years, 3 or 4 times a morning or more, on pyridostigmine and alcohol made my eyes jumpy. Started taking a probiotic in am with food and it was a real improvement; very rarely do I have a loose stool anymore and am on my 3rd month of probiotic. Really a miracle for me.

Just quit alcohol about 9 days ago after many years of moderate drinking, 1-2 glasses of wine per day [red wine made the diarrhea worse] or an occasional beer. Quit because of all the recent studies of mouth and stomach/intestinal cancer related to alcohol, not because of MG. I don’t know if anyone else has tried probiotics with success but no side effects whatsoever for me.

[Bill Wheeler]

I was treated with Zithromax, generically known as azithromycin, several long-term courses to cure Lyme Disease as other antibiotics did not work. It was just after the final 3-month treatment I was diagnosed with Generalized MG. Current literature shows some people with West Nile Virus treated with Zithromax also developed MG. Interesting that FDA and the maker of this antibiotic have never mentioned this as a possible side effect or did further investigation into any correlation. Have any others had a similar experience? Thanks!

[Bill Wheeler]

Thanks, Jodi, for approaching a topic that is often avoided but of significant importance to many of us. There was an article recently in Forum and it mentioned adapting to what your situation requires. My wife is a lot younger than I but was diagnosed 14 years ago with Chronic Fatigue and Sjogrens Disease; Chronic causes tiredness just like MG and Sjogrens causes joint pains and often dry eyes, mouth and other areas, so many of the problems we MG people live with both of us now have from time to time but not at the same time. With some good communication and stowing away embarrassment for discussing intimate details of what works “for me” and what works “for her” and some imagination, you can have a satisfying intimate relationship. There are many alternatives to intercourse when that is not feasible, and many positions to experiment with for non-weight bearing intercourse when feasible. If one partner is fatigued but still interested in intimacy at that moment, other options can prevail to bring pleasure, orgasm, or just an intimate embrace: digital, oral, just friction from two body parts rubbing, making up fantasy stories to share, and recounting some memorable sexual times you had together in the past or fantasies to work on in the future. And both partners can agree to have solo time when not physically possible for one or another to participate. But most important is to understand and communicate when you feel capable physically and mentally to engage in intimacy and when not and accept this without question. Without getting to detailed about ‘how to’, I hope this might help someone. And not offend anyone as being too explicit. Communicate, Communicate, Communicate with your partner!

If this is too explicit, feel free to not authorize posting…won`t hurt my feelings!

[Bill Wheeler]

I just simply say “no thanks, my strict wife says no alcohol allowed” and people laugh but stop offering. I dont want to share my MG or meds with anyone...too personal. I may ask for a soft drink if I think it is an option. Many people do not drink alcohol these days; I do have a glass of wine often at home but are very careful about its affects.

[Bill Wheeler]

Third Pfizer shot, no problems, also received quadravalent high dose Flu shot, felt a bit “off” for a day or so. Very thankful.

[Bill Wheeler]

I have been on meds for 13 months, Pred [10 mg] and Mestonin[60mg] I can tolerate a wine or two but my eye muscles “jump” within minutes of drinking a glass and occasionally my sight clarity is slower to respond for just a few minutes. As I have a strict disciplinary wife regarding my behavior, I am careful about my consumption. I am limited to one glass on occasion and that works for me. Beer does the same thing but a bit slower to react. I find that NA beers replace alcohol and I like Clausthaller Dried Hop, Becks and St. Pauli Girl. Also drink NA wine. Avoids problems!

[Bill Wheeler]

Jodi,

Best of luck to you on your first post surgical trip! You will do fine I am sure; stop when necessary for a break and refreshments as well as to look for something interesting, even at a highway rest stop!

I am only 1 year in with my MG but dont dwell on what ifs because I fully expect any flare ups will be only a minor inconvenience, a postponement of what I am doing, not an end  to it. I may cause my own problems if I stress on what is next, or if the other shoe is about to drop, so I try to remain positive. Make your plans so having to extend a trip a day or two is option B; sometimes my eyesight is , especially for reading or close work, not cooperative so I make a change in my plan for that day, and dont travel anymore than necessary, maybe  staying an extra day.

There is always something beautiful to see or do if you look for it; someone you might not have met, something in nature you would have missed, or even a storm you missed because you changed your plan. Luckily, I work for myself so I can change plans without employment disruption.

Not sure I helped much, but you have good insights into the effects of MG as you have discussed in your topics, and you will do well and then look forward to the next adventure!

 

[Bill Wheeler]

I received 2 shots, Pfizer, no reaction other than sore arm for 2 days.

[Bill Wheeler]

I have used a Hot Tub for 8 months post-diagnosis as I was never told heat could cause problems; I never had any negative effects that I recall. We sold that property and moved about 4 months ago and dont have aa Hot Tub at our new house. Hot showers seem to ease my muscle and joint pains as well as the overall malaise that sometimes accompanies my getting up in the AM [ that malaise is similar to what I experienced with Lyme Disease which took 3 years to get over and multiple treatments with zithromax---mmm, any connection with zithromax and MG onset?].  Hot weather does negatively affect me and I tire much more easily and my eyes dont seem to do as well late in those days.

[Bill Wheeler]

My biggest spoons detractor is myself; it has taken me a year to understand I can`t push myself to the limit with regards to my work or self imposed responsibilities and schedules. If I overdue, I pay the price with more night time leg cramps and general malaise the next day. Maybe I have been trying to prove to myself that I am back to pre-MG days. My wife Wendy helps by reminding me to stop when you are a bit tired or when it is very hot outside or when she says “enough”.

[Bill Wheeler]

Hi All! I was a high activity man, age 72, when diagnosed July 2020…just a year ago. Hiking, swimming, water skiing, boating, maintaining a couple of homes and a lot of acreage. Got up July 4th after a week of extreme heat and working on redoing a long driveway for 5-6 hours a day, digging and shoveling and hauling dirt and gravel, and was seeing blurred double vision. Also, when brushing my teeth, could not form my lips to spit.

That was the beginning, saw Neuro 10 days later, MRIs to check for other causes were negative, started on pyridostigmine and saw some improvement in 24 hours. Referred to MG Specialist at URMed in Rochester, NY but had to wait until 8/14 for appointment. Pretty much could do very little because vision was still very impaired. New Neuro MG Dr. started me on Prednisone 10mg plus continued  pyri and said I would see a difference in 5 days or so…and it was like a miracle! Symptoms disappeared for the most part, but still got tired early evening and long term sustained heavy activity also tired me quicker than before. Sometimes in evening, harder to read and I notice my speech deteriorating some. All acceptable compared to what a lot of people go through.

 

Tried to reduce my pyri [60mg 4 x day] to 3 x day and was under stress from moving into a new house, 2 deaths in our immediate family, selling our other properties and multiple sales of Real Estate homes closing in a 30 day period [I am a residential Realtor]. Relapse and more eye, mouth and fatigue symptoms. Went back to pyri x 4 and increased prednisone to 15mg and then 20 mg…which is where I am now. Symptoms improved but not back to where I was a month ago. Can`t complain! Could be much worse so very thankful that I am doing as well as I am. My wife is 10 years younger but has Shogrens Disease and Chronic Fatigue so I worry most about my taking care of her when she has issues and down the road a bit. All of these things prompted our move to a one level home with less acreage to take care of!

 

I hope to meet you all and hear some of your stories and advice based on your experiences.

 

Bill