I was referred to Dr. Janice Massey at Duke in June, and I have been trying to make an appointment with her since June 12th with no luck. I realize I will have to wait several months to see the doctor after I make an appointment, but I can't even make an appointment.

She apparently did order the SFEMG, which I will have done this Friday, but I don't have any way to get the results unless I can get in to see her. My Endo at Duke was the referring doctor, and I'm sure she will get a copy of the results, but she is not qualified to evaluate me for MG, which is why she referred me to Dr. Massey.

I am way beyond frustrated by the constant roadblocks I am getting from the Neuromuscular Clinic, and their complete unwillingness to even try to make an appointment for me. At this point, I think I will just get a copy of the results from my Endo when I see her on August 11th, and try to get a referral to another doctor.

Does anyone know of a good MG doctor in North Carolina? I am a student at UNC-Greensboro, and I have the student insurance, so it has to be a doctor in NC. Any ideas?

Thanks.

Rose

So, I had the SFEMG with Dr. Massey, as well as a standard EMG and a nerve conduction study. She said the SFEMG did not show any indication of MG, so my nerves are not the problem, but the test showed that my muscles are abnormal. She decided that my muscles are weak because I take cortisol, and that I need to stop taking cortisol and exercise and lose weight.

I tried to tell her that I only started the cortisol in 2011 (for adrenal failure, which means I must take it) and the weakness and fatigue have been a problem since I was 12, but she just repeated that cortisol causes muscle weakness, and that I need to stop taking it and start exercising, and my muscles will get stronger.

She did not order blood tests for the antibodies, she did not do a Tensilon test or a trial of Mestinon. So I didn't really have a clinical evaluation for MG. What I had was an abnormal EMG with a completely off the wall interpretation.

I could have predicted this...

Any ideas?

Rose

You can't just stop taking corticosteroids. This has to be done slowly under the direction of a physician that actually cares. You might want to do some doctor shopping. I don't know who to recommend, but don't just stop taking the medicine.

Thanks, Celeste! I missed that sentence!!!

What a stupid doctor. The problem is that neurologists are not endocrinologists, but you'd think that they would "get" what steroid withdrawal can do to a patient, especially one without adrenal function to begin with!!!

By reading your other post, I just assumed that you already knew this, Rose.

Annie

Yes, fortunately I have educated myself about adrenal failure, and I'm smart enough to know the doctor is an idiot! I have enough trouble making it through the day with hydrocortisone, I'm not about to stop taking it.

Normal morning values are between 17 and 25, but my morning levels, before I take my meds, are about 4. I wake up feeling dead every single morning. The Duke endo only wants me to take 20 mg per day, but some days I need 35 mg or more to make it through. It depends on what's going on that day, and every day is different.

Think about it: your body produces more cortisol whenever you need it, so when they measure your blood levels of cortisol, what they are really measuring is the difference between what you have produced and what you have used. Who decided that 20 mg was all we needed? How do they determine that magic number? I guarantee you, it's somebody sitting behind a desk who has normal adrenal function!!

I don't take any more than I have to take, because I am well aware of the bad effects of too much cortisol. I start with 20 mg, and most days that's all I need. But when my body is experiencing stressors, I have to take more--just as your body would produce more.

It took me a while, but I finally figured out what my body considers to be stressors: if it's hot or cold outside, if I'm in pain, if I have to walk more than a block, if I didn't get enough sleep last night, if I'm studying for or taking a test at school, if I'm up in front of a room of students for an hour while I tutor (even if I perch on a stool, which I do), if I'm sick, if I haven't eaten in the last 5 hours, etc.

These are not things that I consider stressful, but they are things that my body considers stressors, and I need more cortisol. Strong emotions of any kind, positive or negative, or unexpected things like a flat tire, an IRS notice, or talking to an idiot doctor also require more cortisol to manage them. I have learned the hard way that I have to take more, but I only take 5 or 10 mg--again, only as much as I need to take to manage the stressor.

My previous endo, as well as the one who diagnosed the adrenal failure, both said to take 30 to 35 mg per day. So I figure if I average 25-30 mg per day or less over the course of a week, then daily fluctuations are no big deal, and are probably more like what a normal person would experience.

Telling someone with adrenal failure to stop taking cortisol is like telling a diabetic to stop using insulin! That doctor is an idiot. She doesn't have to be an endocrinologist to know that adrenal failure requires replacement hormones, and she certainly should know that you don't just stop taking them!

I swear, in my next life, I'm gong to be an endocrinologist! I know more than most of the one's I've been to about pituitary failure, which is really scary.

Rose