Myelin Oligodendrocyte Glycoprotein (MOG)
I am 31year old female and I was diagnosed with MS in 2013. I was misdiagnosed . My new diagnoses is MOG a rare autoimmune disorder. Since this is such a new disease I am hoping that my doctors will be in communication with Mayo clinic. Anyone else diagnosed with MOG
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Hello @kwitty131, welcome to Connect. I'm glad you are reaching out and trying to learn as much as you can about your condition. I had not heard about myelin oligodendrocyte glycoprotein (MOG) but was able to find information on why it's often misdiagnosed for MS. Here's an article from Mayo Clinic:
Mayo researchers correlate specific antibody with relapse of neurological disorder
I also found a patient related story that may be helpful on the Myelitis.org website.
Rare but not Defeated – My MOG Story
@kwitty131 have you talked to your doctors about possible treatments or getting a referral to Mayo Clinic?
Hello, my 22 year old daughter was diagnosed with MOGAD a couple months ago. We are learning about possible treatments like IV IgG. What have you done since you were diagnosed? Her biggest issues now are fatigue and trying to prevent future flare ups.
Hello @lisabethy, Welcome to Connect. Unfortunately the member who started this discussion, @kwitty131, is no longer following Connect and probably did not see your post. I know it has to be difficult dealing with such a rare disease. You may have already seen the information posted on the National Organization for Rare Diseases which lists the standard therapies and other treatments but I thought I would share the site just in case.
— MOG Antibody Disease: https://rarediseases.org/rare-diseases/mog-antibody-disease/
Have your daughters doctors offered any suggestions on which treatments might be the most effective?
Thank you John. Yes, her doctors have been wonderful and helpful. However, due to the fact that MOG is rare we are getting conflicting information. The doctors are even admitting that there will be different opinions. For example, one doctor is saying that she should not get the next covid booster and other doctors are saying that she should.
My daughter had lyme disease right before she starting getting the symptoms of MOG so another doctor wants her to see a chronic lyme specialist even though it was caught and treated early and she is now testing negative for lyme. The lyme specialist is in a different city , doesn't do telehealth for first appointments, and doesn't accept insurance. There could be a link between the lyme, the timing of her first covid booster and the onset of the MOG.
One neurologist is recommending IV IgG infusions to build up her immune system to try to prevent a future flare up. I have no idea if our insurance will cover that and how much it costs. We are waiting for the next appointment and I think we will learn more then.
When we sent out her blood for the diagnosis, her neurologist insisted that Mayo Clinic do the lab work and our insurance denied the almost $1200 lab bill because the lab is out of network. Our doctor is sending in an appeal to the insurance company.
I have not seen the link you sent so thank you very much.
Look at the MOGProject website. They also have a great FB page. If you need help finding it let me know. Hugs to you and your daughter!