NeuroTalk Support Groups - still trying to get diagnosis

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - still trying to get diagnosis (https://www.neurotalk.org/myasthenia-gravis/187313-trying-diagnosis.html)

Thanks all for the great suggestions. I have been able to talk with 2 people with MG in my area. They have been very helpful. Also special thanks to Annie. I am feeling better and better about all this. Now just have to wait for Mayo would call.
Sandy

I agree with Cait's (Kathy's) post about seeing a neuroophthalmologist

I had my first appointment at Mayo scheduled with the neuro-ophthalmologist and then had a neurology consult with a neuromuscular specialist later that day. The neuro-ophthalmologist is the one that performed the tensilon test. The fact that that test was positive really helped things to move along with the neurology appointment.

I hope your appointments go as smoothly.
Cate

One thing I learned through the process of getting diagnosed (I am also seronegative), is that waiting on a referral can make for a long wait. If you haven't, I would encourage you to call and check on how the referral is progressing. Things get lost and forgotten. Our emergency is not always their emergency.

I was very excited to see you were considering seeing Dr. Weiss as I have heard so many good things about him. Most notably his ability to see you quickly and his openness to LOOK at your signs and symptoms and diagnose you. Did you ever call him?

I have not called Dr Weiss's office yet but have been considering it. My insurance (Tricare) is very restricted and I would need the referral. I have talked to the office staff and they asure me it is moving along. I plan to call every day until it gets sent out. I started taking Huperzine A yesterday and it seems to help my breathing and weakness; not my ocular symptoms though. I have cut my work schedule down to 2 days a week as well. Thanks for all the support and good ideas. This is a stressful and exhausting process.:grouphug:

Quote:

Originally Posted by sandy56 (Post 977152)

My opthomologist wants me to have a Tensilon test. I have diplopia and started to have ptosis when my Neuro started me on a beta blocker for migraine prevention. The migraines just started a few months ago along with numbness and tingling in my hands and feet. I was found to have low b12 and my neuro thinks my symptoms are all due to low b12 (300's). I have been on b12 injections and SL tablets for 2weeks and many symptoms have improved but not the ocular symptoms. At the end of the day my vision is so bad I can barely drive home. I have paper tape in my car to tape open my eyelids if needed. My neuro has not called me back after many messages and I think he feels MG is ruled out since I am seroneg. I live in central Florida. Does anyone know how Shand's:m) in Gainesville is good at MG diagnosis. I am getting frustrated with my current Dr.:mad:

Just from personal experience I was told there was nothing wrong with me by many Doctors, Including the Neurology department at the Cleveland Clinic. I failed the Single Fiber EMG test at the Neuro Clinic in Florida and the doctor there seemed baffled after I was postive through the blood test. Bottom line, I have mild symptoms and the blood tests from multiple labs throughout the years that say I have it. Don't give up and hang in there.

Sandy, ER care is so damn iffy. Call your insurance company and say that your doctor is dragging his feet. Ask the lovely people at TriCare if they would rather have you die or get a diagnosis and treatment. Maybe even record the phone calls :eek: Good grief!!! Then ask if you can go see Dr. Weiss. If they say "No" then ask if you can quote them on that. This is just all silly. BTW, I'm being sarcastic. Don't make enemies of your insurance company!!! Well, maybe except for the asking if they'd like you to die part.

If you can get in to see Dr. Weiss - even if it's a stop gap measure until you can see someone at Mayo - do it! Dr. Weiss is exceptional. They do have, like I've said before, MDA day where the visit is free (at least I think it still is). If the receptionist can't help you, ask to speak to his nurse, who is also amazing.

I just searched TriCare. Guess what? Dr. Weiss is totally covered under them (see below). Work the system. As you can see, he's on page three.

http://hmd.humana-military.com/ProvS...Addr=&AddrZip=

You need someone to evaluate you now. No more waiting for them to deem you worthy of care. Though do dial 911 if you get bad, okay?

:hug:
Annie