canadians

A board to discuss Revimmune as a potential therapy for multiple sclerosis

canadians

Postby mom10789 » Sun May 04, 2008 4:12 pm

first of all i should say sorry for not writting sooner
it's been an off and on nightmare since coming back

my major MS issue is pain, not rare but not too common either
my neck, hands, arms, shoulders and ribs are agony i haven't been able to walk because of pain, i've had very little to no relief in 3 years

so my first visit was to the ms clinic in kingston
saw the no. one guy a dr b
first i saw his intern, nice kid, but he has a long way to go if he is gonna continue in the ms field, i told that my hearing has all come back a couple weeks ago and he said ms doesn't cause hearing issues
anyway, he left me in my chair and tested my reflexes, eyes and a couple other things i was exhausted then dr b came in said that i was ppms with edss score of 6.5, the only suggestion he had for me was to smoke mj 3 times a day he said he wished mn-166 was on the market, he thinks that would help me he is not too sure about the revimmune, something about bone marrow issues but took all the info and was very interested he said he would help out with all the paperwork and stuff but i would not qualify because i can't walk 25 steps
so after that uplifting appointment, i didn't want to go to Ottawa the next day
but.......... i did
so not a good start we got lost, i love my husband more than anything but he is missing that chip in his brain that will ask for directions
so we were too late to see dr freedman but a woman neor had time to see me in his clinic
wow, i really liked having a woman for a change she understood female issues
she said i had spms and showed me the up and downs issues over the last 6 yrs
i had numerous measurable lesions in my brain, now they have shrunk to less them tiny pin dots
i have two old lesion in my spine that have shrunk in size and a new active lesion in my spine below the other two
she asked my husband to lift me onto the table
no more weak eye, all my refexes worked and my muscles worked when i told them to, not very much but they are there
when i'm in my chair with my shoes on, i can't breathe very well and my shoes are freking heavyshe 'thinks' if we can some relief from the pain, i should be able to get back on my legs
she is totally against revimmune, she said the risk is too high for me to get breast cancer, brain cancer and blood cancer
her opinion really surprised me considering who he boss is
the big hope is i get enough relief from the botox on may 14th to get back on my feet
so then i got yet another UTI
and had a major reaction to something
so i had peloerection-goose bumps, but not nice goose bumps, very painful my body became hot to touch and agony to feel, my heartrate was extremely high and my blood pressure was high, and the hair on my forearms stood straight up and were painful
it was freaky
but i was reading about spinal injuries or spinal lesions and it could cause AD and these are the freaky things that happen
so i've had more pain, i couldn't believe i could deal with more

so i'm having botox on may 14th
MRI as soon as possible with the dye, of my head and neck and a bigger look at my spine
although Canadian neuros are not interested in revimmune, i still am
so i gotta work on my 25 steps
sorry about the length
shell
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Postby Jamie » Sun May 04, 2008 4:39 pm

Cyclophosphamide dose: The resurgent interest in cyclophosphamide (at our center and elsewhere) is predicated on a different dosing regimen than has been used previously. HiCy is fundamentally different than all other dosing regimens of cyclophosphamide. The immunologic effect is to eliminate all maturing and mature elements of the abnormal immune system, allowing reconstitution from naive, cyclophosphamide-resistant stem cells. The HiCy regimen has been chosen from animal and human studies that have shown this differential effect on the immune system. Lower doses and higher doses do not have this differential effect and will not be investigated. The differential immunologic effect of HiCy is clearly not the case with other regimens of cyclophosphamide and forms the basis for our trial. Indeed, standard regimens of cyclophosphamide that do not halt progression in MS also do not halt progression in other autoimmune diseases such as SLE. HiCy, by contrast, induces sustained remission in patients with a variety of autoimmune diseases including SLE. We, therefore, propose that HiCy may do the same in MS patients. This regimen is potentially analogous to complete immunoablation with SCT, but it is likely to be significantly safer.



Pertinent and worth a read.

Where has this '25 steps' business come from?

That's new to me for HiCy.

The woman you talk about clearly doesn't have the most up to date understanding of the treatment.

Please contact JH directly to get a current understanding of the treatment, its benefits and its risks, as the people you are currently dealing with do not have that understanding, or if they do they are not communicating it properly to you.


"HiCy is fundamentally different than all other dosing regimens of cyclophosphamide."

If I could scream this in public without being arrested, I would. That's the most frustrating thing. Learned, intelligent, accomplished doctors automatically think they know everything about cytoxan for MS when in fact:

HiCy is fundamentally different than all other dosing regimens of cyclophosphamide.

So to sum up: you sound like you are progressing rapidly, of course continue to follow and consult your local doctors but please consider contacting JH as well - PM me if you want their email address.


[/b]
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Postby mom10789 » Sun May 04, 2008 5:23 pm

jaime
don't be angry
i'm just repeating what happened
and i took all the info from carrie
it must have said 25 steps somewhere in there
being from ontario canada, i need to have a doctor on board from up here
and carrie said there was no one from ontario yet
even our insurance is different
even i have three
OHIP, great west life and blue cross
or line of credit
so it won't be as easy as i thought
shelley
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Postby Jamie » Sun May 04, 2008 5:38 pm

Hey,

I'm not angry at all!

Just English!

I'm often accused of being angry or aggressive but it's just the way we talk/type!

I wish you the very best of luck!

Jamie.
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Postby robbie » Mon Jun 09, 2008 12:59 pm

although Canadian neuros are not interested in revimmune

why is this?
Had ms for over 19 years now.
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Postby Lyon » Mon Jun 09, 2008 3:56 pm

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Postby mom10789 » Mon Jun 09, 2008 4:07 pm

yeah, but robbie is canadian also
i was kinda surprised with dr freedman in ottawa
but i haven't given up yet
shell
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Postby Lyon » Mon Jun 09, 2008 4:25 pm

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Postby mom10789 » Mon Jun 09, 2008 7:02 pm

we are trying to go through OHIP
no other canadian has
dr b in kingston is gonna help with all the paper work in canada
dr hammond wants my pain under control and see my edss score then
so far no luck
all regular pain meds, alot of treatmeats,botox and tomorrow methadone my chiro comes every fri and has helped with my neck
but my shoulders, arms,hands amd ribs are agony
i'll play the paper game while i try to get stronger
but if i qualify i'm not waiting for OHIP
i also have great west life and blue cross and if all else fails we will remortgage our house
shell
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Postby Lyon » Mon Jun 09, 2008 7:21 pm

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Postby mom10789 » Mon Jun 09, 2008 7:49 pm

no not really
i wear the ms sticker on my forehead
so why look for anything else
i'm sure if i stubbed my toe, it would be ms
shell
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