My regimen(s)

Tell us what you are using to treat your MS-- and how you are doing.

Postby CureOrBust » Thu Jan 24, 2008 1:00 am

seeva wrote:HOW DO MANAGE TO GET AIMSPRO IN 2005 STILL NOT AVILABLE IN AUSTRALIA ACORDING MY NEUROLOGY.PLEASE LET ME KNOW
You can get it through what is known as "Category A" by the TGA (Therapeutic Goods Act) which sets out how to get drugs not currently approved. see http://www.tga.gov.au/hp/sasglance.htm
Even though it should only be for patients near death, they are a little more relaxed. You simply get a doctor to prescribe and sign the form, and organise delivery with Duval. At the time, they had a contact in Australia, I am not sure that is still the case. But, contact Duval directly (as I did) to see if they still can supply it in Australia.
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Postby seeva » Thu Jan 24, 2008 3:40 am

HI MEMSER THANKS FOR YOUR REPLY. I HAVE WRITEN A E.MAIL TO DAVEL IN THE U.K. ONCE I HAVE GOT SOME REPLY. I SEE MY DR. ABOUT THE DRUG.

REGARDS
SEEVA
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Postby CureOrBust » Tue Mar 25, 2008 4:27 am

It's been on my mind to post some response as to how I have done on the Vonner treatments.

I still have MS, and I still have disabilities. I cannot say that I noticed any real difference during or after the treatment.

I have gotten to a stage where I think I have a handle on how to minimise the damage of an attack to some extent, and slowly improve between attacks. This has continued, slowly, before, during and after the Vonner treatment.

They recommend that after the initial treatment, another evaluation is performed to find the next "stressor". I have little drive to send them any more money. I do not think the treatment worked for me.
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Postby ladystewart » Sun Jun 22, 2008 11:07 am

Been on Rebif, Novantrone, Tysabri, Copaxone and on now???? Nothing working thus far. I know aaaaaaaaaaalllllllllllllllll are looking for what helps. Everyone is different!!
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Postby CureOrBust » Wed Jul 30, 2008 6:28 am

Just to give an update.

I saw my Neuro yesterday, and asked him for another MRI referal (this would be my third).

I also asked for an EDSS score (never done by a neuro) and he gave me a 3.5 (he was tossing up between 3.5 and 4.0).

I have had two very minor relapses in the past few months; following minor infections.

I have received and started using "Lions Mane" after information on the thread http://www.thisisms.com/ftopicp-43125.html#43125
http://findarticles.com/p/articles/mi_m0ISW/is_249/ai_114820665/pg_1?tag=artBody;col1
http://www.explorepub.com/articles/kawagishi_11_4.html
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Postby CureOrBust » Wed Sep 17, 2008 6:45 am

Just a quick update on a few things.

I didn't notice anything with the lions mane.

I have also tried a product from iHerb called "Myelin Support" or something. I didn't notice anything; well not MS'y, but I think it may have given me a slight tan. I don't have any other explanation, and other people have mentioned it. Weird
Image

I am also on a self study of trying pulsed high dose oral steroids (75mg for two days). I have started with a two week cycle, but intend to expand it to 4 weeks.

I have been using Modafinil in a very sporadic manner. I consumed about 60 tablets over 7 months, taking 1 or two in a day, on days I expected fatigue to be a problem. I find it makes a noticeable difference in my feeling of fatigue. I tried it because cheerleader (http://www.thisisms.com/ftopicp-33464.html#33464) mentioned it helped with her husbands motor skills, and also because it may be neuroprotective. I didn't get any real motor control improvement.

I got another script, and realised the most i have taken is only 100mg twice, in a single day. Reason being research found the lower dose was better for MS. However, doses well over 1000mg have been tested on humans. So, being the reckless guinea-pig that I am, I thought I might trial a higher dose. Last weekend I trialled 200mg twice in the day.

I noticed the general lifting of fatigue, slight more I would say, but nothing spectacular. What did surprise me was that the tingling in my feet seemed a little less prominent. And this continued the next day (with no modafinil).

So I thought, maybe it was simply the waxing and waning of MS, so I have waited a few days, and tried the higher dose again today. I again noticed through the later part of the day, that the tingling is less pronounced than usual.
Image

Don't know what to make of it, it is what it is. Now I am going to monitor myself carefully for the pattern of it returning to the "norm", for me.
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Postby cheerleader » Wed Sep 17, 2008 7:25 am

CureOrBust wrote:Just a quick update on a few things.

I didn't notice anything with the lions mane.

I have also tried a product from iHerb called "Myelin Support" or something. I didn't notice anything; well not MS'y, but I think it may have given me a slight tan. I don't have any other explanation, and other people have mentioned it. Weird
Image
.


huh, Cure, intereseting!...maybe you've got some carotenemia going on ...usually associated with an orange/tanning look to the skin. Eating lots of carrots lately? I looked at that myelin support over on Alex's thread... didn't see anything that would make you swarthy.

Also interesting experiments with the provigil. It's been so helpful for Jeff in abating his fatigue. He finds that taking 200mg once in the morning gives him a "burst" of energy, much better than splitting the dosage into 2 halves. You both may be on to something with the higher dosage....as long as you can get to sleep at night!

AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureOrBust » Sun Sep 21, 2008 6:48 am

another thing, which I may of posted a few years ago. I recently tried adding some "protein" powder to a smothie (no dairy). I exercise 3 times a week, and thought the protein may help with building my strength and/or recovery. Last time I tried this, I noticed I felt better not taking it. This time, I took it for two days, and there was a definitive drop in my performance (I monitor time, distance etc). When I stopped taking it, it returned. Has anyone else noticed this?

Its not like a relapse (to me anyway), because, if I stop, it resolves itself. But if I continues, I don't honestly know where it would lead.Image

I also bumped into some friends I hadn't seen for a while, and they mentioned I was tanned. I have run out of the product, so we will see if I lose the colouring.
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Postby cheerleader » Sun Sep 21, 2008 9:36 am

Your protein powder may be soy based. Lots of MSers have allergies to legumes and can't do soy because it causes inflammation.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureOrBust » Sun Sep 28, 2008 2:39 am

It' been a while since I posted my progress in a graph. Previously I was doing reverse on an elliptical (as it was my weakest) Now I do forward. Below is a graph of part of my records for the past few months. The units are base-lined and compounded from readings of time, distance & calories. But in simple terms, anything above a "3" is over 40 minutes. It may sound impressive, but I have handle bars to hold, my balance still sux.
Image
The "dip" you see was on the two days i took protein powder.

Today I was probably a little "hopped up" as I was on my last day of three, of prednisone 75mg/day, 25mg DHEA, 200mg Provigil, 20mg Prozac. Taking this mix, I found I don't need/want the 4-AP. But that was just a single day trial.

Just to put things into a "bigger scale". Here is the full version of it, which also shows times I was not exercising heavily, and also my old "reverse" graph (NB: Different vertical scales ie not for direct comparison)
Image
PS: Sorry for the width.
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Postby jimmylegs » Sun Sep 28, 2008 5:05 am

good work cure!
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Postby CureOrBust » Tue Dec 16, 2008 7:14 am

I saw my neuro today, last time I told him I wanted Campath off label, as I didn't meet the entry criteria for either of the phase III trials, and I was adamant to do something about my MS, NOW. He had since spoke to Genzyme regarding the trials he would run, and asked if he could get it off label for me. He was told they could not supply it for that purpose, so he said no to me. I showed him info that showed it was being used in the USA off label, and this info didn't seem to move him much.

He has suggested I try getting into the trial with a colleague of his also running the phase III trials, and would show him my file, and get back to me soon. He wasn't too concerned over the fact that the inclusion criteria required 6 months of Rebif while I had only done 4 months. He just scoffed that Genzyme would care about the 2 months. The last trial coordinator i spoke with said she actually took my case to Genzyme USA and they rejected me.

Now we will see. :?
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Postby cheerleader » Sat Jan 24, 2009 10:49 am

Cure, I'm breaking my self-imposed exile to say WOW!!! :lol:

Wonderful progress and healing in your clonus. Really glad you documented it. Do you credit this to your exercise and supplement program?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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