Hi Chris, and thanks for dropping in.

I watched number of your video's, and really enjoyed seeing you in 'real life'. Somehow having a personal demonstration helps to understand, where written words wouldn't.

I'm intrigued and curious about a few things you talked about, so I hope you will be coming back to the forum.

I watched the "Chris formally introduces himself" video, and I loved your explanation of the various symptoms. I had a few a-ha moments, even 17+ yrs into this disease. I wanted you to know that I have experienced most of the symptoms you described, but have never seen or talked face-to-face (or face to video :D) with anyone who can describe and name their symptoms so early in the game. It's only been a few years for you, really, but you have a lifetime of symptoms. :(

You said you use something for the itching, but I didn't catch the name?

I understand all the things you said you "miss", and I must admit you helped me to appreciate the simpler things in life. Every time I clean up after my dog, I will remember what you said. ;)

You mentioned not being able to drink any more because you don't know what's going to happen. I miss being able to enjoy a few drinks too.

I found your comment about your appetite interesting. I have the EXACT problem, and although I have blamed the MS, I wasn't sure. Sometimes I do eat enough & well, but a lot of time I just eat because I can't sleep if I don't. BTW, I don't eat much red meat (haven't for years), but don't notice anything different when I do. What does it do to you?

What happened when you went on Tysabri? How long were you on, and when did you go off?

You said you had a bad exacerbation from Dec - Mar (?). Do you have spinal lesions? I have some wicked exacerbations from spinal lesions, and have recovered mostly at about the 3 month mark (more over the next 18 months). Is it possible that you would have seen this improvement in walking anyway, since you were just recovering anyway?

What other symptom improvements have you seen? Is there a particular video or blog I can read that summarizes that?

I am so glad to hear that something seems to be making a difference for you. :hug: Thanks for sharing your story, video and all.

Cherie

Just regular 'ol run of the mill Zyrtec works great for itching.

When I still had the MS if I ate too much meat aka consecutive days my legs would weigh 40lbs more two days or three days later.

I never went on Tysabri. After I looked into what that stuff really does to your body I said no way in hell.

I was on Avonex for 9 months and Copaxone with LDN for the two years up to HiCy.

I have a few small spinal lesions but the one in my neck is healing and has actually gotten smaller and is barely noticeable on MRI.

I have never once remitted. Never. HiCy has finally allowed my body to heal. Relapsing remitting would have been a dream to me. My MRI all said RRMS but my body was PPMS all the way.

No the fact I am walking again is a direct responsibility to HiCy. I only got worse before. I am walking better now than 1.5 years ago.

Well I can't show some things on video. My bladder and bowels work normal again. My balance is pretty close to normal with my eyes closed. I walk into a lot of doc appointments now rather than taking my wheelchair. I sleep normally. I used to take 2-4 hours of MS related fatigue naps a day and I don't need them at all anymore. The MS hug is gone. The brain fog is gone. I can remember a list. I can feel things with both hands. I can work out now and actually gain muscle mass.

Geeeeeeees...what else? lol

Folks everyone of you could try to do this...it really wasn't that big of a deal. Avonex has a higher morbidity rate than HiCy and this actually worked.

RUSH UNIVERSITY MEDICAL CENTER
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also....

Carrie Trecker
Departments of Psychiatry and Neurology
Johns Hopkins University School of Medicine
Johns Hopkins Hospital, Meyer 113
600 N. Wolfe St.
Baltimore, MD 21287-7121

410-502-2574 (Office)
410-614-1530 (Fax)

Dr. Douglas Kerr / Mary Brown
Johns Hopkins Hospital
600 N. Wolfe Street, Pathology 627C
Baltimore, MD 21287

Leave them a message and they actually will get back to you.

chris,

Isn't there another site due to open at Denver soon too? Any more cities in the pipeline that you are aware of? I am interested in cities closer to the Arizona area.

gonnamakeit

I have heard that but I can't verify it for you. It's moving west.

I went to JH in MD because I couldn't wait. I assure you I would have been confined to a bed by the end of this year.