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…[Read more]

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,…[Read more]

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…[Read more]

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…[Read more]

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.

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.

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…[Read more]

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.

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.

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.

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…[Read more]

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…[Read more]

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.