Myasthenia Gravis News Community › Forums › Healthcare and Treatments › How do I know if I’m with the right Neurologist/Neuro-Specialist? › Reply To: How do I know if I’m with the right Neurologist/Neuro-Specialist?

  • Community Member

    Member

    I truly feel your pain. After having my PSA being 60 when they like you to only have a PSA of below 7 I ended up with my prostate removed. The only reason my doctor found it was because I had a bout of prostatitis I believe it’s called. After that they did a PSA for my first time ever even though I have a family history. What a surprise to have him sit me down as soon as you get the results and tell me there’s no question about it I have cancer. They got most of the cancer so I still have some treatments and I’ve had radiation. During the few days I took to recuperate I managed to develop mg. Since that time I’ve become my own advocate because nobody really cares for yourself like yourself. Switched doctors obviously. I went to my ophthalmologist who told me I probably have mg after some testing. Found a neurologist and went to him. I am one of the few 50% who can be diagnosed by blood test. According to the blood test I have it but he told me it is strictly ocular. However I have problems with climbing stairs and it almost exactly coincided with my diagnosis of mg. In fact it was a little before that. He tells me that’s my imagination. I cannot walk in a straight line and I tire easily. I am right now in the process of trying to find a decent different neurologist as my last ophthalmologist visit to see about having surgery to pin my eyelid up resulted in them suggesting maybe I don’t have mg and instead have MS or something similar. I will go see whatever doctor I need to and beat on every door and demand everything I need. This has been absolutely ruining my life. So many things on hold until I can get this ironed out and it’s been since 2017 I’ve been dealing with this. Read all you can and go to your doctor with all the info you can. If they don’t want to listen to you there are more doctors out there. Many of them have simply taken the buy a new Mercedes oath versus the Hippocratic oath.