[Carrie McDade]

2 things I have tried that help somewhat:

1. Take Metamucil. It doesn’t reduce the frequency of the stools, but it does solidify them a bit.

2. Taking Imodium, 2 tabs, daily also helps me. My gastroenterologist says it is ok to take it everyday. More than 2 tabs causes hard constipation in me.

Good luck!

Carrie

[Carrie McDade]

I take pyridostigmine 60 mg twice a day and developed symptoms like yours in Jan. 2022 – coated tongue, extremely dry mouth upon awakening in the morning, and burned sensation on the roof of my mouth as if burned by hot cheese on a pizza. Symptoms were corroborated independently by my doc who noted that my tongue was coated, and later by my dental hygienist who gasped and asked how did I burn the roof of my mouth.

I started anti fungal treatment thinking it was thrush, but 6 months of nystatin and Fluconazole did not help. Immune blood tests were done (negative) and I was referred to an ENT, whose exam was inconclusive. He suggested I stop brushing my tongue and eat more fiber-rich fruits and vegetables for possible nutritional imbalance. (I was on a medically-supervised weight loss program at the time).

I was diagnosed with MG in Oct. 2020, and started Prednisone and Pyridostigmine at that time, weaning slowly off the Prednisone and discontinuing it by Jan. 2022. I haven’t noticed any correlation between taking the Pyridostigmine and the burning mouth symptoms. I’ve experimented with stopping the Pyridostigmine, but my lip and tongue muscles are too weak to negotiate a tidy dinner and my fingers cannot grasp a fork, so I continue it.

The burned mouth symptoms never have gone away, but they do wax and wane, and I have just learned to live with it for almost 2 years, and self-diagnosed burned mouth syndrome. I believe I read somewhere that burned mouth syndrome just goes away on its own, sometimes after 6-7 years!

Carrie

[Carrie McDade]

I had a 7.2 cm thymoma removed via robotic surgery through a 1 inch incision in August 2020. The thymoma ruptured while being removed, resulting in 27 chest radiation treatments. Thymectomy was not done, and is unable to be done now due to adhesions and scarring from the radiation.

2 months after the thymoma was removed I was diagnosed with AcHR and MUSK positive generalized late onset MG. I was on prednisone for a year, very gradually weaning off. My MG symptoms have been mild, and I continue to take 60 mg Mestinon twice a day.

[Carrie McDade]

I have had burning mouth syndrome for a year. The roof of my mouth feels like I burned it with hot cheese from a pizza. (My dental hygienist exclaimed how burnt my palate looked).  I also have a chronically coated tongue, and wake up with a severely dry mouth every morning.

I take a very small amount of Pyridostigmine, 0-1 tab in the late afternoon depending on how weak I feel. The burning mouth symptoms don’t seem to be related to the Pyridostigmine.

[Carrie McDade]

I have had 3 Pfizer and 1 Moderna. I was on 20 mg Prednisone for the first 2 shots, tapered down to 5 mg Prednisone for the 3rd shot. No Covid Spike antibodies detected in my blood after these 3 shots.

Discontinued the Prednisone in October 2021, received Moderna shot Jan. 4, 2022. Covid spike antibodies were positive from blood drawn Feb. 18, 2022.

My doc has recommended 2nd Moderna vaccine 5 months from the first, or early June, 2022. Total of 5 shots: 3 while on Prednisone, and 2 off of Prednisone.

[Carrie McDade]

Dyspnea. I have times when I’m standing in the kitchen preparing food when I feel as if I’m running a race. Breathless, rapid heart rate, and sometimes if I don’t go sit down, I feel faint.

My cardiologist has prescribed a beta blocker, not for hypertension, but to slow my heart rate. I also drink 10 glasses of water a day per instructions from cardiologist.

[Carrie McDade]

I gained 10 pounds while I was on prednisone and Mestinon from Nov. 2, 2020 to Oct. 14, 2021, and my blood sugar required insulin for control. I lost the weight and no longer take any meds for MG nor diabetes.

[Carrie McDade]

Has anyone tried a cooling vest from thermapparel.com listed on the myasthenia.org website? I’m wondering if it is comfortable and worth the price.

[Carrie McDade]

I am doing a slow taper from 30 mg of prednisone, decreasing the dose every month: 30, 25, 20, 17.5, 15, 12.5, 10, 7.5, 5, 2.5 and discontinue on Oct 9. I have been on 5 mg for 3 weeks and feel better and better, mostly I think due to better blood sugar control. At higher prednisone doses, I took 1/2 Mestinon twice a day. Now I am taking 1 Mestinon three times a day.

I was diagnosed Nov 2020, AChR positive, with mild double vision, facial weakness, neck weakness (unable to lift head from lying on back). I am in remission, except for pain in neck and shoulders at the end of the day.

[Carrie McDade]

I was just diagnosed within the past year with MG, and have new, unusual pain as well, mostly in my right eye, back of my head, neck and shoulders later in the day. The shoulder pain makes it difficult to fall asleep.

[Carrie McDade]

I was just diagnosed within the past year with MG, and have new, unusual pain as well, mostly in my right eye, back of my head, neck and shoulders later in the day. The shoulder pain makes it difficult to fall asleep.

[Carrie McDade]

I am able to limit my trips to stores, as my husband is willing and able to do the grocery shopping, etc. When I do go out, I wear an N 95 mask.  I recently had antibody tests done, the IgG and T cell tests, and they both came back negative. This means I have no immunity after two doses of the Pfizer vaccine. I was on 20 mg of prednisone when I had my two doses in the winter. I am on a slow taper, and I am now down to 5 mg of prednisone per day. I have an appointment to get a third Pfizer vaccine this afternoon, and I’m hoping I have a big reaction to it, meaning my immune system is revving up. Wish me luck!

[Carrie McDade]

I was vaccinated while taking 20 mg of prednisone per day on January 30 and March 4 With the Pfizer vaccine. Due to my immunocompromised state, I am not immunized even though I am vaccinated. A recent Covid antibody test result was negative, meaning I have no antibodies. After each of the shots, I had a slightly sore arm and that was it. According to Dr. Fauci, if you are sick after you get the vaccine that means your body is responding strongly to the antigen, producing antibodies.

[Carrie McDade]

I was taking 20 mg Prednisone on Jan 30 and Mar 4 when I received the Pfizer vaccines. My recent Covid antibody test was negative, no antibodies. Docs have told me to continue stricter measures: masking, social distancing, stay away from kids and crowded areas. Ok to visit with a few fully vaccinated people indoors.

[Carrie McDade]

Hi Jonathan,

I can answer a few of your medspeak questions: morphine is a painkiller, as is Fentanyl (10 times stronger than morphine, I think). ASA is acetyl salicylic acid, or aspirin. ICU is intensive care unit, PACU is post acute care unit, LTAC is long term acute care. Foley is a urinary catheter. Code Stroke is perhaps what I know as stroke protocol, where a certain set of procedures is done to see if you’ve had a stroke.

[Carrie McDade]

Thanks for the link. I had forgotten I had viewed it before, but remembered I had the eye pain and occipital headache and glad the doc mentioned it because I thought it was so unusual. Feels good to be validated.