Search found 10 matches

by KMG
Tue Jun 11, 2013 6:33 am
Forum: Regimens
Topic: Hyperbaric Oxygen Treatment??
Replies: 0
Views: 2545

Hyperbaric Oxygen Treatment??

Has anyone had experience with HBOT to treat MS? I'm SPMS and post Tysabri cessation 2 years ago in rapid ambulation decline.

Thank you
by KMG
Wed Feb 27, 2013 11:11 am
Forum: Tysabri (Antegren, Natalizumab)
Topic: Gilenya doesn't stop post Tysabri reactivation
Replies: 5
Views: 3075

Re: Gilenya doesn't stop post Tysabri reactivation

Thank you for sharing this information. I am desperate to find a solution to slow my post-Tysabri rebound. I stopped Tysabri in May 2011 due to AB to Nat and JCV+. Since then month over month progression. I will probably return to Tysabri despite super high risk of PML (1 in 100) because at this rat...
by KMG
Wed Jan 23, 2013 9:10 am
Forum: Tysabri (Antegren, Natalizumab)
Topic: PML info in regards to MS treatment
Replies: 7
Views: 3416

Re: PML info in regards to MS treatment

Mention the word "PML" to Biogen as it relates to Tysabri and you will get their attention immediately!! It is the biggest reason that expected sales of the drug have never come close to estimates. They were clear that I had been off Natalizumab for almost 2 years so PML risk was not the ...
by KMG
Tue Jan 22, 2013 10:49 am
Forum: Tysabri (Antegren, Natalizumab)
Topic: PML info in regards to MS treatment
Replies: 7
Views: 3416

Re: PML info in regards to MS treatment

Very helpful thank you. Since Tysabri cessation 20 months ago I have had symptom progression month after month. I have gone from playing tennis and running to full time cane use with difficulty. I'm considering a return to Tysabri as it managed my MS well for almost 4 years. I stopped treatment beca...
by KMG
Mon Jan 14, 2013 3:02 pm
Forum: Tysabri (Antegren, Natalizumab)
Topic: Lethal MS following Tysabri withdrawal
Replies: 3
Views: 5198

Re: Lethal MS following Tysabri withdrawal

Does anyone have experience or know someone who went back to Tysabri after a "holiday"?? I was on Tysabri 48 months and was doing great until 5/11 I noticed some progression when walking distances. At that time I was still playing competitive tennis. My Neuro advised I stop Tysabri as I'm ...
by KMG
Wed Dec 19, 2012 9:35 am
Forum: Stem Cells
Topic: My CtrlAltDel - Status
Replies: 292
Views: 81738

Re: My CtrlAltDel - Status

Asher, Best of luck with MSC transplant. I'm following closely as my HSCT with Burt in May doesn't appear to have worked for me. Symptoms worsening and new ones as well. Burt was hesitant to treat me as he was doubtful of efficacy due to my diagnosis 10 years ago and scant proof of inflammatory dise...
by KMG
Sun Jun 10, 2012 7:52 am
Forum: Stem Cells
Topic: My CtrlAltDel - Status
Replies: 292
Views: 81738

Re: My CtrlAltDel - Status

Asher, What great news to hear from you! I'm thrilled to read your positive update regarding your physical and cognitive recovery AND your new consulting opportunity. Best of luck with your position and I wish you continued success. I have completed HSCT through Dr. Burt in Chicago and returned home...
by KMG
Sun Mar 18, 2012 3:30 pm
Forum: Stem Cells
Topic: My CtrlAltDel - Status
Replies: 292
Views: 81738

Re: My CtrlAltDel - Status

Asher, I saw you had posted an update a few days ago and to be honest I was a bit nervous to read it. I know you were struggling with your recovery and it's GREAT to see the reported progress! Those results are very impressive and I'm sure they will continue. Keep up the good work. I was supposed to...
by KMG
Wed Jan 11, 2012 10:52 am
Forum: Stem Cells
Topic: 2 Years Post HSCT And MS Still Stopped
Replies: 167
Views: 60397

Re: 2 Years Post HSCT And MS Still Stopped

George you are 100% correct that the latest published study from Dr. Burt has all 21 MS patients free of progression with a follow up period between 24-48 months. There were 5 (24%) that relapsed but responded very well to further immunosuppression and were still progression free. My comment yesterd...
by KMG
Tue Jan 10, 2012 12:46 pm
Forum: Stem Cells
Topic: 2 Years Post HSCT And MS Still Stopped
Replies: 167
Views: 60397

Re: 2 Years Post HSCT And MS Still Stopped

I recently saw Dr. Burt regarding participation in the MIST trial. He stated that although the trial is not complete and the data has not been thoroughly analyzed, he had great confidence that the efficacy of HSCT treatment to completely stop progression of RRMS is 70% for qualifying participants (m...

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