Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Well, Mayo has moved much more quickly than I expected them to. I gave them the go ahead to review my information on Friday. I heard back from them yesterday. They would like to offer me an appointment. First they tried to give me November 21st (the day before Thanksgiving) but I declined (duh). So I'm headed up there on December 6 for a minimum of 3 business days and a maximum of 7 business days depending on what tests they want to run.
I guess this is encouraging, in a way. When I initially tried to get an appointment they explained that if they didn't feel they had anything further to offer or if they concurred with the referring doctor, they wouldn't offer me an appointment or they could put me on a waiting list. Well, here I am, up front. There aren't a lot of curable or "better" diseases than MS that could cause my symptoms but obviously they are seeing that something could've been missed here. I do need to know exactly what I have so that I can start dealing with it.
I'm dreading the fact that they will probably want to do my LP again. I DON'T WANT ANOTHER LP!!!! I can handle almost anything else. Those suckers are going to have to put me out or something.....I'll have the panic attack of the century.
I guess this is encouraging, in a way. When I initially tried to get an appointment they explained that if they didn't feel they had anything further to offer or if they concurred with the referring doctor, they wouldn't offer me an appointment or they could put me on a waiting list. Well, here I am, up front. There aren't a lot of curable or "better" diseases than MS that could cause my symptoms but obviously they are seeing that something could've been missed here. I do need to know exactly what I have so that I can start dealing with it.
I'm dreading the fact that they will probably want to do my LP again. I DON'T WANT ANOTHER LP!!!! I can handle almost anything else. Those suckers are going to have to put me out or something.....I'll have the panic attack of the century.
If I were going there, it would be about my CCSVI?
As to lumbar punctures, have never had one - ask for an MRI.
Painless and easy, will diangnose MS.
I have a lot of symptoms that match up with MS and some that don't. I've had joint pain and swelling and a sun sensitive skin rash on both arms and elbows. I have a positive ANA (test for lupus) and until this neurological incident I was under the care of a rheumatologist. I also have a vitamin A level that is through the roof (vitamin A can cause pseudotumor cerebri).
Basically they have no clue what is wrong with me. The doc I'm seeing now stopped in to observe me when I first came into his office to see another doc and said, "You are not MS. I have seen MS and you are not MS." He thought I had West Nile. Well that came back negative and now he says he's 80% sure I have MS. I looked at my paperwork when I was referred to him from my initial visit and the paperwork said at the top "MS vs. Stroke?"
I'm a conundrum. I'm going to Mayo so they can figure me out. Once and for all.