What Should I Do?
I went to BWH and meet with Dr. Dou.... a 150-mile round trip. He wanted to continue to see me, but it is too difficult for me to drive there with my double vision and droopy eyelids. We tried Tele-visit without success. You had sent me to Boston because you did not have any further actions to follow and that BWH would have more meds and procedures. Has that changed?
Reply from Neurologist:
Unfortunately, my prior advice has not changed. You have medically refractory Myasthenia Gravis which has not responded to the available medications I am able to treat you with locally. For this refractory disease, you should be followed by a Myasthenia Gravis expert such as Dr. Dou...
I then went to another doctor close to home and I was told that she does not do second opinions????
I then went to yet another doctor and he told me to contact my insurance company to see how I go about getting the new MG medicine. Vyvgart. I contacted my insurance and was told that the doctor needs to source the medication What should I do?
Or is there someone I could send my records to, for a review/opion?
Thanks for your reply.
Another problem is that Vyvgart is not in the Cape Cod Healthcare formulary. I was told that I would need much further testing before that could proceed further. No one has told me what to test for.
Are there any MD's that will work via tele-visits that you are aware of?
Thanks
I would encourage you to utilize the Myasthenia Gravis Foundation of America, Inc.'s search tool, they have a list of vetted physicians that they refer to as "Partners in MG Care." You may be able to find someone who does telehealth. Here is the link for more information: https://myasthenia.org/Newly-Diagnosed/Finding-MG-Care-Providers Wishing you all a gentle day! - Best, Kaitlyn (Team Member)
There is only one doctor that is listed as working with MG on cape cod mass inb the Tufts Dr directory, and that is the one that does not give second opions. I have had Cellcept, pyridostigmine for over a year, I had 4 days of IVIG and a brief trial of prednisone. Over the yaer I was being treated the only exam that was given was force being applied to my arms and legs to check my strength. Why does the doctor need to have me in front of him. I am not a doctor but it seems to me that progress could be made by different meds and blood tests and muscle strenth could br determined by conversation. I got my GP doctor to order MG blood tests and the resusults show a decrease of my antibody receptors. Not sure waht that means. but I think it is a good thing.
I have had Cellcept, pyridostigmine for over a year, I had 4 days of IVIG and a brief trial of prednisone. I have had "EMG" and multiple blood tests.
Hello! What treatments did your neurologist say they could not treat you with? Are there any treatments you tried and did not respond to? How long were you on them, and what dose? Strangely, the doctor told you they won't do second opinions. That is suggested in the medical world and should be expected. It could be because that doctor not wanting to be compared to another doctor and hear things such as, "well, the other doctor said____. " Or they don't want what they say to be disregarded if they prefer the other doctor's opinion.
I recommend finding a doctor that will treat you with Vyvgart. Try to get an appointment with every neurologist in your area who has MG experience or is open to treating it. I have heard that there is an approval process for Vyvgart, which is what the doctor may have been asking you to do with insurance. However, the doctor's job is to order the treatment, and then insurance will work on the approval.
Regarding traveling to doctors, have you considered assistance from programs that drive individuals to their treatment appointments?
- Jodi, Team Member
