Search found 13 matches

by suenz
Fri Feb 19, 2010 2:09 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Inclined Bed Therapy
Replies: 832
Views: 276563

Hi Andrew I have managed to sleep on as much of incline downstairs as possible so I wasn't sleeping in an up right position. Still have Spasticity in legs most of the time and spasms - but no bad episodes in last few weeks now. Will try and see if we can do the 6" rise this weekend if I can get...
by suenz
Fri Feb 19, 2010 12:37 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Inclined Bed Therapy
Replies: 832
Views: 276563

Well if I can get upstairs tonight is going to 6'" inches good if I missed the the last 3 weeks of being inclined? Good to hear about the Psoriasis - I would love to clear that up it seems to also aggravate my MS symptoms too! Well if you think raising it to 6" might be good. I only got to...
by suenz
Fri Feb 19, 2010 10:04 am
Forum: Low Dose Naltrexone
Topic: LDN and vitamins
Replies: 4
Views: 4581

LDN & diet

I looked into the MS Diet (Swank) ans have tried to follow as much of the guidelines with common sense - at least cutting down on fats and dairy & processed food (+fast food) These are things that are not very nutritious for you anyway. I am not on LDN yet ...BUT I do know someone else who is on...
by suenz
Fri Feb 19, 2010 9:51 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Inclined Bed Therapy
Replies: 832
Views: 276563

IBT Inclined Bed Therapy

I just wanted to post that started IT back in January at 3.5 Inches and first two weeks noticed how comfortable it was, hands and feet warmer but still kept waking at night 1-3 times (not to urinate because I never really have that problem, just waking up) then we raised it to 4.5 inches and started...
by suenz
Sat Jan 30, 2010 9:27 am
Forum: Drug Pipeline
Topic: BAF 312
Replies: 5
Views: 6349

Re: BAF 312

Anyone heard anything on BAF 312? It's a cousin to FTY 720, I just finished Phase II and am trying to decide if I should continue or not with Phase III. Marybeth I was told that BAF 312 was supposed to be even better that Fingolimod or FTY720 ...but they are only in trial studies at the moment. Susan
by suenz
Fri Jan 08, 2010 11:54 am
Forum: General Discussion
Topic: IBT Inclined Bed Therapy
Replies: 1
Views: 2025

IBT Inclined Bed Therapy

Has anyone with MS used Inclined Bed Therapy and if so how well did it work for you?
Just curious to find out more about it so any feedback would be greatly appreciated.
:)
by suenz
Wed Jan 06, 2010 3:34 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-
Replies: 1011
Views: 466482

Psoriasis & MS

Has anyone had any problems with Psoriasis since being dx with MS?, on their head, with severe itching off and on - It disrupts my sleep and my nerves get very aggravated by the burning and itching. Just wondering if there was a connection at all with iron deposits in the brain and the venous blocka...
by suenz
Wed Jan 06, 2010 3:28 pm
Forum: General Discussion
Topic: Your valued openions plz
Replies: 6
Views: 2374

Psoriasis & MS

Has anyone had any problems with Psoriasis since being dx with MS?, on their head, with severe itching off and on - just wondering if there was a connection at all with iron deposits in the brain and the venous blockages (CCSVI) that might be linked or cause this problem in someone with MS.
by suenz
Thu Dec 24, 2009 11:07 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI in Canada: Who/What/Where
Replies: 116
Views: 41187

After reading so many different responses from so many other MS patients and supporters on forums and then to hear all the discouraging responses & news about so many neurologists and the MS Societies etc. showing a vague interest in CCSVI research we need to really start pooling our money-OUR D...
by suenz
Tue Nov 24, 2009 4:31 pm
Forum: General Discussion
Topic: The Liberation Treatment: A whole new approach to MS
Replies: 28
Views: 7259

Well it was a little encouraging to hear in the news today that the MS Society decided it will support funding for this new treatment. However I am told it takes 9 months to a year before funding even gets approved then they claim it will take extensive research and trial studies before any treatmen...
by suenz
Mon Nov 23, 2009 10:45 am
Forum: General Discussion
Topic: The Liberation Treatment: A whole new approach to MS
Replies: 28
Views: 7259

I also agree with you - you expressed it in words that I did not address at all. I am so glad to hear your optimistic approach! I think we should fight for this in a rebellious way and take a stand at least and make this a victory for a treatment that sounds very promising. Yes I am also very curiou...
by suenz
Mon Nov 23, 2009 7:53 am
Forum: General Discussion
Topic: The Liberation Treatment: A whole new approach to MS
Replies: 28
Views: 7259

Hello again

I am from Ottawa ON and I don't know if or when I should mention this liberation treatment to my family doctor yet. It certainly seems like its worth a try though. I am surprised & disappointed with the statements released from MS Societies in both Canada & the US. They actually want to disc...
by suenz
Sun Nov 22, 2009 8:22 pm
Forum: General Discussion
Topic: The Liberation Treatment: A whole new approach to MS
Replies: 28
Views: 7259

Liberation treatment

My husband and I watch the CTV-W5 story here in Canada last night and were very excited to hear about this new information about Dr. Zamboni's new treatment in Italy. I hope that this Liberation treatment will offered here in Canada very soon as well because I have been suffering with RRMS since 200...

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