Well, today I went for my results from my MRI of the brain. My Neurologist said it was normal. He says I have Narcolepsy. When I asked him questions about my numbness of the face he brushed it under the rug. When I told him about my spasms and Charlie horses in both legs he said it was cataplexy. When I asked about my vision going in & out he said there are no lesions causing vision issues. When I told him my symptoms started when I was 19, and went away during pregnancy and breast feeding with… read more
I did not have any lesions in my brain but I did in my spine. I also had the optical neuritus which you need to have a retina specialist take a look for that possibility. The neurologist can also perform an Evoke potential test to investigate the issues with your vision. Keep fighting for the answers. It took 7 months of going to different doctors before I got the correct diagnosis.
Im sorry that you had to go throught that without any answers to ease your concern on what's going with your body, I agree with Sunseeker get a second opinion becasue I feel he's brushing you off like you don't know what's going within your body and for him to keep saying Nacrolepsy not once both twice and oh now he realized he isn't a Sleep Specialist I tell you girl have to keep from cussing doctor's out best of luck to you and your in my prayers
I had to get a second opinion from an MS specialist before I was diagnosed. I agree with getting that second opinion but from an MS specialist.
You need a new neuro. You have a lot of issues and he is not addressing them. He admits he knows nothing about narcolepsy but insists you have it. You need a new neuro. His Non answers to your questions remind me of the neuro I quit going to. Good luck..
I also totally agree with everyone above, get a second opinion. Just like someone said above, contact the National Multiple Sclerosis society, they can help you find a neuro Dr. That specializes in MS. I would add though, get all of your past MRI scans and results, also bring your other Dr.s summary notes, and lab results, and copies of any other bloodwork or tests you have all ready had done. This way he can review all of this info on your first visit with him. Be ready to give him a full history of all that has happened to you with dates and frequecy of your symptoms, I suggest writing all of this down for him and keep copies for yourself, in case you need all this info again. Write down all of the meds you have taken to treat your symptoms, include the drug name , dosage and frequency. Let him know what meds have helped your symptoms and any that you tried that did not. Providing him with this info will help speed up his diagnosis or opinion of what is going on. It saves his office the time of retrieving all of this info for you, and at the same time you can review your own charted medical history and add on what is missing; everything the other Dr. Ignored : ) You have to be your own advocate. I had a similiar situation, I had to see four doctors before I found my neuro Dr. and two of my scans done in the past were misread and the neuro Dr. I have now stated he definitely saw MS lesions. So go with your gut, and stick to your guns, have them find out your diagnosis, no one knows whats going on in your body except you!! Hope all goes well, Good Luck : )