Comments on Wheelchair Kamikaze: NIH Thinks I DON'T Have MS. Wow!

I am farsighted on my right and shortsighted on my...

2011-02-23T05:04:30.964-05:00

I am farsighted on my right and shortsighted on my left or is it the reverse? ;))) I can't remember which is which. I always carry three pairs of glasses (the third one is a pair of sunglasses).... Hilarious post, Marc. I really hope you will get to the bottom of the question. I always have a good laugh, not at you but with you when I read your blog. Laughter is the best medicine :)

Sorry to hear about how you feel. I've had MS ...

2010-12-09T02:16:34.100-05:00

Sorry to hear about how you feel. I've had MS for almost 10 years and all of the first line drugs have failed me slowly over time. I am thankful to live close to NIH and because of my condition I am in a study to evaluate a new drug for "highly active MS."

They have been incredible throughout the whole process. They do monthly exams on me, take my phone calls when I call in, etc. Sorry you were not selected for their trial. They are a research facility..

How can someone with 'atypical presentation...

2010-07-22T17:47:45.367-04:00

How can someone with 'atypical presentation' MS get evaluated at NIH? My lesions are more typical of NMO (due to their length) but I have no eye trouble nor NMO antibodies. There are several other ways in which I don't seem to have more common manifestations or signs of MS. How can I get further assessment?

I DONT LIKE DRIVING NYC IN A CAR U R VERY BRAVE ...

2010-07-13T13:06:35.222-04:00

I DONT LIKE DRIVING NYC IN A CAR U R VERY BRAVE U SHOULD THINK ABOUT A LIST OF FRIENDLY RESTAURANTS

I saw the webcast earlier today and was interested...

2010-04-15T01:07:27.016-04:00

I saw the webcast earlier today and was interested, although I'm not sure I buy it. Just as they said, much more research needs to be done.
I am also enrolled in several studies at NIH. Did you have any 3T or 7T MRI tests done by Dr. Bagnato? She studies vascular structures related to lesions and free iron in the brain all related to MS.
I'm impressed that your question was addressed during the forum today!
You can reply to me a fred at m (no space)morris then a dot com.

well i've laughed with you in the past, cried ...

2009-11-21T14:34:18.938-05:00

well i've laughed with you in the past, cried with you......might as well curse with you too, lol. And let me tell ya, i can curse as good as any sailor.......so if you hear some real good ones coming from the mid west..well, thats ME

hang in there my friend, the drs are liable to figure it out, in spite of themselves. I always tell my hubby i want a definite diagnosis at my autopsy since i can't get one in life....

Janet

Yay for havingg no new answers and still having no...

2009-11-20T16:15:30.689-05:00

Yay for havingg no new answers and still having no treatment even it you did!Give yout wife some ear plugs, stock up on Red Bull and let 'er rip! You've earned a tirade and then some!

Laughing... not at you but with you. All the best ...

2009-11-20T00:43:32.476-05:00

Laughing... not at you but with you. All the best to you with future testing.

Lynne

You will need to buy a trilense pair of glasses. O...

2009-11-19T11:21:35.103-05:00

You will need to buy a trilense pair of glasses. One for nearsight, one for farsight and the center tinted rose. Aarcyn

I would say congrats on not having MS, but I feel ...

2009-11-19T11:07:17.556-05:00

I would say congrats on not having MS, but I feel like its like the time I came as close as you can come to failing a genetic test

"you have a mutation on the right gene, but its the wrong mutation"

If Im every in New York City and I see a bug coming at me at 10 mph, I'll know its you.

Oh Marc, My SIL upon hearing of my MS gave me go...

2009-11-19T10:24:22.265-05:00

Oh Marc,

My SIL upon hearing of my MS gave me good advice. "don't forget to breath". I had a Tourette's student. Her fav. was "f***, f***, f***" or "S***,s***, s***" Through behavior management she overcame it. We never gave her Red Bull! There's hope for you!!!!
So sorry for outcome. MS sucks but doctors can too. Ah, Marc.
kicker

Marc, Oh Marc I am sorry to say I laughed so hard ...

2009-11-19T08:46:55.146-05:00

Marc, Oh Marc I am sorry to say I laughed so hard that my morning coffee leaked out. I am praying that the CCSVI will be your port and give you some relief. Thank you for keeping us updated and also giving some laughter to a horrific situation that we all seem to be riding with, not by choice.
Be strong patti

"But first I think I'm just going to curs...

2009-11-19T02:34:27.908-05:00

"But first I think I'm just going to curse a lot, like a Tourette's patient on Red Bull. Cover your ears..." I'm not sure whether I want to laugh or cry with you. How about laugh until I cry. Sometimes I cry until I laugh but it's not nearly as easy.

With or without MS, nothing's changed but the title. That sucks. I hope the CCSVI will lead you down a brighter lit road.

Much Love, weeble