Upcoming Appt at Wexner (Ohio State) MG clinic
 

After 8 months of severe MG in a small town, in two weeks I finally get to see a specialist at Ohio State. (I see Dr. Miriam Freimer.)

I was just wondering if anyone had been there or another MG clinic. Maybe you could tell me what to expect? How it will be different than my 10 to 15 minute sessions with my current neuro who uses google a lot during our visits.

Many thanks!

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Hi, Mikanro. Welcome!

Do you not have a hospital near you? You should not have to suffer so long!

Specialist appts. are usually more thorough. They should do a good clinical exam, looking for weakness. They should run antibodies for MG, including AChR, MuSK, and LRP4 antibodies. Though they often run the AChR first, since that one is more common. They might do an RNS, EMG, or Single Fiber EMG; or they might schedule those for another date. Some clinics do pulmonary testing. If you have MG, they will probably due a chest CT scan. They look for thymic hyperplasia (larger than normal thymus) or thymic tumors. Don't worry about that though!

Have you had antibody tests done?

At least your current neuro is open enough to use Google! I think that is great. Regular neuros don't necessarily know about MG in depth. I'm always grateful when a doctor is humble and does more research. No one knows everything!

At the appt., they may even discuss treatment options, and offer to give you a prescription of Mestinon. If they offer steroids, please consider other options. Steroids are often used these days only as a rescue if someone is having an MG crisis. Steroids come with so many serious side effects and are almost impossible to withdraw from. They can use IVIG or plasmapheresis during a crisis as well.

Anything else you need help with? I'm sorry you are not doing well. If you become worse, please don't hesitate to dial 911. If your breathing is bad, you can't swallow, or you can't move well, those are emergencies. You need to seek out help right away.

Take it easy until your appt. I hope you'll be okay!

Annie

You should have a nerve fiber test to determine nerve conduction as related to cholinesterase. You should have a chest CT to determine if your Thymus gland is enlarged. You should have multiple blood studies checking your immune levels and more; but especially your immune levels. Doctors love to use prednisone; but I can't take that so my neurologist has me on Cellcept. Check the internet sites for the name brand of any drug your doctor prescribes and see if you can get money off in order to get name brand. Let us know how things go for you!

I am on IVIG @100gm/month. (Immune Globulin) Used to treat autoimmune disorders. Also, you can take this at home and do NOT have to go into an infusion suite. There are specialty pharmacies who will offer a financial waiver for the co-pay for IVIG which can be cost prohibitive to most. Some pharmacies will make you list every asset to the penny; other young start ups will take a streamlined waiver. You can also ask for an experienced nurse in the infusion of IVIG and not get some newbie from an area nursing agency who does not understand the drug. It is a live infusion from pooled whole blood extracting the immune globulin molecules. It cannot be infused quickly as some pharmacies will allow/instruct. Especially for your first 4+ infusions although you can react to any different lot.

Hope some of this helps!