Search found 125 matches

by KateCW
Wed Jan 08, 2014 8:52 am
Forum: General Discussion
Topic: Canada has highest rate of MS in the world: study
Replies: 15
Views: 2565

Re: Canada has highest rate of MS in the world: study

I wonder about agricultural pesticides. There was lots of crop dusting when I grew up, my father sprayed for mosquitoes and all sorts of pest at our tree nursery. Surrounded by farmland, everybody else doing the same thing! I had lots of strep throat growing up, and long cold dark winters. Tons of M...
by KateCW
Mon Jun 24, 2013 9:10 pm
Forum: Drug Pipeline
Topic: RE INTRATHECAL METHOTREXATE TREATMENT FOR M.S
Replies: 2
Views: 1495

Re: RE INTRATHECAL METHOTREXATE TREATMENT FOR M.S

I've been travelling to NYC for this treatment or 2 years. Ithink it has stopped/slowed my progression.
by KateCW
Wed May 01, 2013 11:55 am
Forum: General Discussion
Topic: Occupational therapy: worth the time?
Replies: 6
Views: 1074

Re: Occupational therapy: worth the time?

I've always found OT way more helpful thanPT because it's about activities of daily living and they often have rather cool modified tools or household items to help you cope.
by KateCW
Wed Apr 24, 2013 6:09 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Annette Funicello passes away :(
Replies: 15
Views: 2678

Re: Annette Funicello passes away :(

Beautifully said, Blossom. I have a wonderful husband and son and live a pretty happy, full life. But it's not what it could have been if I had been spared this illness, and I certainly don't consider it a "gift", as people are wont to say about unpleasant, character building experience. I don't was...
by KateCW
Thu Apr 04, 2013 5:58 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Ottawa trials "cure" MS
Replies: 14
Views: 1695

Re: Ottawa trials "cure" MS

We all have different definitions for what "cure" would mean to us. Cancer can be cured without recovering what was lost ( Breast, kidney, etc).

No one in this article used the word " cure". Must be the reporters.
by KateCW
Thu Apr 04, 2013 5:41 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Ottawa trials "cure" MS
Replies: 14
Views: 1695

Re: Ottawa trials "cure" MS

There are stem cell treatments and there are stem cell treatments. what you had is not at all like the stem cell transplant in Freedman's study or like the mesenchymal stem cell transplants being trialed for MS patients in a few locations ( Cleveland I think?). Unfortunately there are clinics that o...
by KateCW
Wed Apr 03, 2013 5:13 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Ottawa trials "cure" MS
Replies: 14
Views: 1695

Re: Ottawa trials "cure" MS

Good God, I hope we see stem cell treatment in Canada before CCSVI - it's been studied longer, more established as a treatment and helpful For other diseases. I'm frustrated at the slow pace of development for MS specific stem cell therapies...how many more 10 year studies on the su ject do we need....
by KateCW
Wed Apr 03, 2013 5:00 pm
Forum: General Discussion
Topic: Ottawa trials "cure" MS
Replies: 12
Views: 1657

Re: Ottawa trials "cure" MS

Like all research they seem to want to follow people for at least ten years. I have discussed this study with my neurologist. The primary reason that those with aggressive disease were in this study is because they were the ones willing to take the risks associated with chemo, etc. dr.Freedman is cu...
by KateCW
Wed Apr 03, 2013 2:48 pm
Forum: General Discussion
Topic: Ottawa trials "cure" MS
Replies: 12
Views: 1657

Re: Ottawa trials "cure" MS

This is an important, groundbreaking study that shows real promise for what HSCT can do for MS and stopping progression.
by KateCW
Fri Mar 15, 2013 3:32 pm
Forum: General Discussion
Topic: help .primary progressive multiplescelrosis
Replies: 20
Views: 3568

Re: help .primary progressive multiplescelrosis

The UK neuros sound like the ones here in Canada. They won't try anything experimental at all even though they have nothing to offer.
by KateCW
Wed Mar 13, 2013 12:53 pm
Forum: General Discussion
Topic: help .primary progressive multiplescelrosis
Replies: 20
Views: 3568

Re: help .primary progressive multiplescelrosis

I agree about the HSCT and pretty much everything Marc ( wheelchair kamikaze) said. I have been travelling to the same Manhattan clinic he goes to from Western Canada for almost years now for intrathecal methotrexate and I am holding steady ( I was pretty impaired when I started o was glad to stop t...
by KateCW
Fri Aug 17, 2012 8:30 am
Forum: General Discussion
Topic: Spread the word on Dr. Terry Wahl!
Replies: 6
Views: 1708

Re: Spread the word on Dr. Terry Wahl!

I have her book, have viewed her presentations on YouTube , etc. it's an amazing story but her results have never been replicated by anyone else as far as I know. I specifically mean getting up out of a wheelchair and walking again, not vague, immeasurable things like " I have more energy". I just w...
by KateCW
Tue Jul 24, 2012 6:22 am
Forum: Low Dose Naltrexone
Topic: I have definitely progressed while on LDN
Replies: 31
Views: 10783

Re: I have definitely progressed while on LDN

Sorry if it seemed as though I attacked you- I was rather vehement in my statement-probably some of my disappointment and frustration coming through. I have progressed very quickly in the 8 years since my son was born. I had some left leg weakness for a few years and struggled after my pregnancy to ...
by KateCW
Mon Jul 23, 2012 10:43 am
Forum: Low Dose Naltrexone
Topic: I have definitely progressed while on LDN
Replies: 31
Views: 10783

Re: I have definitely progressed while on LDN

I did have some done by a functional medicine doctor a year or so ago. She said the test she runs are cellular, not serum? That probably makes sense to you. I was very low in magnesium (spasticity!) and C0Q10. She got me some ubiquinol and other good quality supplements. I think that's what you mean...
by KateCW
Mon Jul 23, 2012 7:07 am
Forum: General Discussion
Topic: Talkin about wheelchairs
Replies: 9
Views: 1393

Re: Talkin about wheelchairs

Harry is absolutely right-scooters are fine to do on your own but I have been " fitted" by an OT for a power chair and there are many things to consider. You do need a professional for a wheelchair purchase. However, your description of your functioning made it sound like a scooter could be a good f...