Hi, Annie. Thanks for the clarification on the SFEMG. I am trying not to get frustrated, but I have been trying to get diagnosed for 40 years! Hard to stay hopeful after that many dismissive, uncaring, condescending, snarky "you just need to lose weight and exercise" responses, from so many useless doctors I've lost count! I didn't expect to get that from Dr. Massey, but she just added herself to the list.

You're right, she is blaming it on the hydrocortisone. The problem is that I have had the muscle weakness and fatigue since I was 12 (or younger) and I only was diagnosed with the adrenal failure in 2011. I was not the only one that was surprised she didn't order any blood tests--so was the Endo that referred me to her. My PCP ordered the Ach Receptor Antibody tests, but that didn't help since it's negative.

While Dr. Massey was doing the SFEMG, she asked me if I had ever had botox injections in my forehead. Then when she was doing the EMG, she asked if I took cholesterol medication. When they were doing the nerve conduction study, her Fellow asked if I had diabetes. So clearly, they were seeing something abnormal on the monitor. I just think she didn't want to be bothered.

I decided this evening that I am going to ask my PCP to refer me to Dr. Howard for a consultation, so your suggestion is just confirmation that he's a good option. The Endo at Duke is saying she doesn't know what else she can do for me, and NO WAY is she going to volunteer or agree to a referral to their arch-rival, UNC. Luckily, my PCP believes there is something wrong.

The only ace up my sleeve is a cardiopulmonary stress test that I had done back in 2002, which I flunked, when I was being evaluated for Chronic Fatigue Syndrome. After baseline levels were recorded, I was told to ride the bicycle at maximum effort for as long as I could. I rode the bicycle until I was drenched in sweat and my leg muscles gave out, which was at about the 6 minute mark.

Six minutes! I hit anaerobic threshold before 5 minutes. They had to help me stagger over to the table to take my core body temperature again, because my leg muscles would not support me. My core body temperature only went up half a degree (normal is one to two degrees). I had to lie there for a long time before I could get up and leave the test room and I was completely exhausted for days afterwards. That's how exercise has always affected me.

Their conclusion was that I did not meet the criteria for CFS, that there was a metabolic cause for the results, which they said were all abnormal, and that it was NOT due to deconditioning. At the time, they said it was a 25% whole-person impairment, and that was before I got so bad I couldn't work full-time. It's gotten a lot worse since then. Now I have the data from the EMG tests to add to that evidence. Some day, I will find a doctor that likes puzzles and is willing to figure it out.

The muscle weakness doesn't improve with exercise, so I think we can rule out LEMS. I don't have ptosis and never have, but one eyebrow is always higher than the other, and it's the only eyebrow that goes up when I try to raise my eyebrows. The other one just sort of twitches. Does that count?

I have shortness of breath if I do much of anything, which I never used to have, and now I also run out of breath before I finish a sentence, which never used to happen. You know how when you sing songs, you know where to breathe to get through the words to the end of the phrase? Well, now I have to breathe half-way there--I can take in the same amount of air, but it doesn't last as long. I don't have asthma or bronchitis, and I don't wheeze, but I have a chronic cough that I never used to have.

Worrisome signs that something is going on, but I don't know what. Maybe I need to find a pulmonologist too. I know I don't have the typical symptoms of MG, but I have enough that someone needs to pay attention. There is something wrong.

Anyway, thanks for listening. If you can tell me any other specific blood tests or other tests that I should ask for, that would help, because my PCP wants to help but doesn't know what tests to order--and neither do I.

Thanks again.

Rose