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by MaggieMae
Wed Mar 30, 2011 7:23 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Muscle Spasms and Anoxia/Hypoxia
Replies: 19
Views: 10265

I'm sure Dr. S. will check those iliacs!

Thank you Clever. That is what I was thinking (and hoping) too.
by MaggieMae
Wed Mar 30, 2011 6:24 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Muscle Spasms and Anoxia/Hypoxia
Replies: 19
Views: 10265

One of the first things I can remember when my husband was diagnosed in the mid 70's was that when he was sleeping, his legs and sometimes his whole body would jerk. Seems like in timed intervals. Still today it continues when he is asleep. Some nights are better than others. He also now has leg spa...
by MaggieMae
Tue Mar 22, 2011 2:30 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 2350580

Dr. Sclafani: "i am a bit more concerned about the hypercoagulability of the antiphospholipid syndrome (Hughes sydnrome) which can mimic MS to some degree. i am thinking to get a hematology consult on MS patients with a history of clotting problems like DVT before treatments to look for this sy...
by MaggieMae
Sun Mar 20, 2011 8:38 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI or Tysabri??
Replies: 27
Views: 6937

My husband has been on Tysabri for over three years. At our last visit with his neurologist, the neurologist talked about PML and all that goes with it. I asked if it would help to have his infusion every six or eight weeks instead of every four. Neurologist said chances of PML would remain the same.
by MaggieMae
Tue Mar 15, 2011 10:09 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI tracking project-POST PER P.1 FORMAT ONLY
Replies: 163
Views: 345639

CCSVI TRACKING 03/15/2011 MS HISTORY Name William Male/Female: M Age: 61 Date(s) & type of neurological diagnosis: RRMS 1974-1995, SPMS to present Lesion locations (most affected side, if known), number: Not known MS treatments: ACTH, prednisone, Methotrexate, Betaseron, Tysabri, Gilenya since S...
by MaggieMae
Sun Mar 06, 2011 11:51 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani says thanks to an unknown person
Replies: 40
Views: 11156

Happy Birthday from our family too!!
by MaggieMae
Thu Mar 03, 2011 11:09 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: freezing cold feet
Replies: 21
Views: 7736

Try WARM CREAM which can be purchased on-line at Vermont Country Store. My husband swears by it and uses it every night on his feet. Hasn't had a problem with cold feet since started to use a couple of months ago. I read that it dilates your blood vessels.
by MaggieMae
Fri Feb 18, 2011 8:43 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Loobie update - 18 months out
Replies: 25
Views: 6521

Lew,

You didn't mention (and some of the new people on this forum would no know this) but you are no longer taking Tysabri since a few months after your treatment. Correct?

I'm glad you are holding your own. Good idea to get that Azygos checked again some day.

Wishing you the best.
by MaggieMae
Thu Feb 17, 2011 10:36 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Appointments at American Access Care
Replies: 185
Views: 44949

Me thinks some people must be secretly going to Brooklyn.... 8O Anyone with upcoming appointments? We're rooting for you! We are waiting to hear back from Dr. Sclafani. Insurance was approved and intake form sent in for treatment at AAC. We started this journey (for treatment w/ Dr. Sclafani) back ...
by MaggieMae
Mon Feb 14, 2011 2:40 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Cece's turn
Replies: 722
Views: 159362

Cece,

How many days does Dr. Sclafani recommend that you stay in NY (after your procedure) before returning home or flying?
by MaggieMae
Sat Feb 12, 2011 4:39 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Cece's turn
Replies: 722
Views: 159362

Cece

Been checking this site every few hours and saying a little prayer for you too. I'm so happy to hear that all went well and hope that you continue to improve.
by MaggieMae
Fri Feb 04, 2011 11:48 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Cece's turn
Replies: 722
Views: 159362

Wishing you the best. :D
by MaggieMae
Tue Jan 18, 2011 11:47 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Appointments at American Access Care
Replies: 185
Views: 44949

Thanks Cece. I always appreciate your input. You may remember, my husband is on two lists with two of the best, but has heard nothing regarding scheduling. So, I keep watching and hoping (for all those in our area of southwestern PA) that there will soon be procedures performed close to home. There ...
by MaggieMae
Tue Jan 18, 2011 8:06 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Appointments at American Access Care
Replies: 185
Views: 44949

Thanks Cece. I remember that comment now, but I am hoping that some new updated info is available.
by MaggieMae
Tue Jan 18, 2011 7:53 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Appointments at American Access Care
Replies: 185
Views: 44949

Dr. Sclafani,

When do you think there will be CCSVI procedures performed through American Access Care or any IR or Vascular doctor in the Pittsburgh area? I think I saw the there is an AAC in the Pittsburgh area.

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