Saw Dr Drucker, A neuro Opthamologist from University of South FL. What a nice Dr. He looked over the ton of records I brought along as well as performed a few tests. He said that he would advise my three Drs who referred me to quit torturing me by continuing to test me " I have MG." He wants me to see Dr Weiss, neurologist in St Pete, on June 13 to hopefully successfully get started on a proper treatment. My neurologist here who I had thought had given up on me apparently got my MRI, Ct scan, and pulmonary function tests results back. He called so I have an appointment. Stress, long trip, exposure to who knows what with Grandsons and at Univ of South Fl and my lungs are full and I stumble like a drunk. Seeeing my pcp after the Neuro tomorrow. And before you ask Anne and Bubba I will be getting a copy oh my records from Neuro Opthamologist. Any words of wisdom? Can't proofread this. Can barely see😵

Invest in some face masks. Not kidding. Others are a germ threat to you and your life.

I hope the PCP listens to your lungs and orders an antibiotic if necessary. You may need more treatments for MG. Sounds as though you are not doing well.

Yeah, enough already. It's so obvious that you have MG. There are a lot of doctors out there who are afraid to commit to a diagnosis without a font of proof.

Take care of yourself, Jane.


Annie

Oh no. Just left my neurologist here I PC. He say "what did Neuro Opthamologist say? " I told him he said there was no doubt I had Mg and they need to treat me. Neurologist says "you don't have MG and you can go back to him for treatment." Started weaning me off prednisone. On my way to pcp. Feel like absolutely crap but, on well.

I just don't have patience right now for stupidity (the neuro). Life is too short.

All diseases have signs, symptoms, markers, and gold standards for proof. MG is no different. Yet it seems as though neuros are the ones who aren't standardized.

"Regular" neuros don't seem to "get" MG. They think that if a patient doesn't have perfect test results then they couldn't possibly have it. Okay, then what else causes fatigable weakness that improves with Mestinon, steroids/immunosuppression, IVIG, and plasmapheresis?!

Your neuro is insecure. If he cannot handle another doctor diagnosing you, then he doesn't have the backbone to do that either. No, I don't know him. But I know many doctors just like him.

I'm not mincing words. This situation with MGers not being diagnosed when they obviously have MG has gone on long enough. The neurological community needs to get their collective crap together.

When you see Dr. Weiss, it will be like a breath of fresh air. It will be more difficult to diagnose you, since you are on Pred. Which is one reason why I warn off newbies from taking that unless they absolutely have to. Until a patient is fully diagnosed with MG, life can be brutal after that if there isn't enough proof. But I am sure he will still be able to give you an honest assessment that isn't mired down in prejudice, bias, and other nonsense.

You'll be okay. Trust your instincts. Find help when you need it. Take it easy until you have more help. Stay away from germs and that Florida heat!!!


Annie

Hi Jane,

Do you have the option to change neurologists? I would contact the neuro-ophthalmologist, and ask for a referral to a different neurologist, someone who will take him at his word. This is bonkers. You need treatment. Maybe the neuro-opthalmologist has encountered this before, and will know somebody to recommend. I'm serious.

Please be careful and take good care of yourself. Meanwhile, hopefully your PCP can help, too. Or s/he can refer you to somebody, possibly?

Take care,
Erin

Just left pcp. Have antibiotic fo r bronchitis The jerk Neuro is weaning me completely off the predinosone. We all sit impatiently and still weak waiting for June 13. The Neuro Opthamologist in Tampa said he couldn't treat me

Hi Jane,

I'm so sorry to hear you have bronchitis. I hope the antibiotics will help.

If the neuro-opthalmologist can't treat you, that doesn't mean he can't provide referrals. You can still contact him for help with finding another neurologist if you want to switch to a different doctor. He may be able to help with that, even if he won't be able to continue to see you.

Another option is to ask if your PCP is willing to take over treatment with the prednisone. S/he might consider it.

Take care,
Erin

Jane,

HOW is he weaning you off of Pred? In what increments? Doing that alone could tank your MG. If this neuro is so cavalier with your MG, he may be the same way with the Pred withdrawal. If that is done too quickly, you can have an adrenal crisis. That can be life threatening. Signs of that are increased muscle weakness, extreme fatigue, sweating (sometimes profusely), etc.

Ditto on what Erin said. The N-O might be able to recommend someone. Weiss might be able to as well, after you see him. Problem is that you need help now.

What antibiotic was prescribed?

Annie

My pcp herein PC said he would help with the prednisone. I don't thin Dr Druckers at Univ Of South Fl can help much from his specialty but I am going to give him a call. Fresh out of yo yo's fromatound here. Very scary but I am back to waiting as quietly and peacefully as I can until June 13. Thanks everybody. You are my world

Amoxicillin. 40mg prednisone to 30 for one week. Theme news to 20 for one week. Then 15 more week. The 10 one week. Then 5 one week