Finally, a neurology appointment
 

Well, I received some good news today:) One of the neurologist I called for an appointment had a cancellation, the neuro that has another MG patient. And I have an appointment tomorrow. I am so relieved. I know this is just the first step in another endless line of tests, but at least, maybe they can put me on medication so I feel better. It would be good just to get out of this state of limbo. I will let you know how I make out. I value everyone's input.
Wish me luck,
kathie

Oh great news. I wish the best for you.
Mike

Good luck, i found i had to be very proactive in getting doctor to start, modify treatment so be sure to ask. By the way be prepared you will probably still be in limbo reegardless of what happens tomorrow. This is a complicated illness and everybody is different. When i first started reading about it in addition to perhaps overstating how many people lead "normal" lives, i think the information out there understates how long it takes to get under control. True i had read meds could take up to a year to be effective but i had not realized that for me at least, no meds were going to make me feel "normal" anytime quick so now i just take each day as it is and try to go with it.

Again good luck!

Ditto that answer

Kathie, I hope it goes well. I can't believe I'm saying this but try to let the neuro take the lead. We patients shouldn't have to play these kinds of games but a lot of neuros tend to be on the arrogant side. If you tell them you have MG, they might say to themselves, "How dare she think she knows more than I do!" :cool:

Sorry but I had another appt. today with a doctor who couldn't handle patients daring to think for themselves, even if they're right. It's so sad. Aren't we on the same team?

I hope this neuro is nice, smart and helps you!!!

Annie

Good luck! And this quote is very true. We shouldn't, but in my experience me must. So keep that in mind.

You are so right Annie!!!!!! I had been contemplating using reverse psychology with a neuro. Just because it always works so well on doctors and fluctuating symptoms - that is also pretty sad in my view.

No advice from me just wishing you luck and may it be your turn this time, Kathie :)

Thank you all for your well wishes and suggestion. I am typing up my symptoms and onset on a list. I have copies of all my blood work and letter/notes from specialist. One of my letters is from a rheumotologist who says he suspects MG and not RA/SLE etc. So I will let the symptoms, droopy eye and all as well as the rheumotologist note take the lead. I cannot tell you how much your support has meant to me through this difficult time.:grouphug:kathie

Well, I cannot say that the neuro appointment went well. He looked at the list of test results and symptoms and said "I do not think it is MG". He did not do an EMG because of my history of RSD. He ordered a bunch of blood test, including antibodies for MG and antibodies for a bunch of other rare autoimmune diseases and B12 & folate. He is sending me for a test that is suppose to measure and evaluate the ptsosis and another for tinnitis for the unsteady gait. No medicines because he does not think it is MG.

So now I am in Limbo Level 2. If my antibodies do not come back positive and he does not treat something, I am going down to Jefferson Univ hospital. The whole exam took 15 minutes. He tested my muscle strength once on each limb and did not do repetative tests to see muscle fatigue.

I am slightly depressed and very frustrated. Any suggestions on what to do?
thanks,
kathie:(

It sounds like a typical neuro visit to me...........

more tests
 

So the neuro sent me for a VEP and BAER today. Has anyone ever had these test and has it helped to prove MG or am I just going in the wrong direction?

Last night both eyes were so weak both upper eyelids were quivering like jello. My eyes seem to be getting worse but the muscle weakness has stabilized since the weather has turned cold.

thanks
kathie

Kathie, I'm sorry you're still in limbo. It often isn't as easy as, "Hi, there, patient . . . your eyes are droopy so I guess you have MG." :cool:

Does your neurologist think you have MS? Or is he ruling it out . . . by charging your insurance company as much money as possible. ;) Have you had a brain MRI?

http://www.webmd.com/multiple-sclero...otential-tests

Is this neurologist an MG expert? Isn't your RSD isolated to a specific area?

A SFEMG should not make RSD worse. I'm not expert but it's the more specific test and would probably be done on a deltoid (shoulder), EDC (wrist) and/or frontalis (forehead) muscle.

I hope you don't have to wait too long for answers. Hang in there. If you get worse and have muscle weakness that makes you unable to walk/move well, swallow or breathe, dial 911. If you do have MG, it can get worse fairly quickly.

:hug:
Annie

The neuro said he did not think I have MG, but he did not say what he thought I did have. He is not a MG expert but he does have another MG patient. I have a brain MRI next Wednesday. Tomorrow, I have a bunch of blood test including the MG antibodies, anca antibodies, aldolase and serum electrophoresis.

My RSD is in my left foot, but I have dystrophy in my whole left leg from the RSD. I hope one of the tests show something they can treat. I guess from the test he may be suspecting MS.

The eye symptoms are the worse. Most of my weakness is in my legs, I stumble alot. Today the shoulders and arms were very weak. I have not had shortness of breathe since the summer heat is gone. I do have alot of coughing with a wheeze. I watched a video for choking problems on-line from an occupational therapist and it has really helped with the choking and swallowing problems.

My doctor network post the blood test on-line so I should know in a week the results. My next neuro appointment is not until early November. I will let you know how it goes.
thanks,
kathie