Multiple Sclerosis

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Multiple Sclerosis

It was early in the morning...

It was a dark and stormy night....  Well, in this case that's literally true.  We've had no moon, but lightning and thunder with no rain.  It's the kind of weather you would expect at the start of a gothic horror movie. 

Brain atrophy

Can the light brain atrophy be caused by the killed cpni and apoptosisi afterwards?

Porphyria / MS / CAP - What to do?

I write on behalf of my brother - he has progressive MSi. As I have written before he is finding CAPi hard to tolerate. He feels he wants to stop on an almost daily basis, his partner, my Mum and Dad, and I have all been encouraging him to continue. My Mum also has MS but a different type to my brothers. I have started to read back through the site and I'm wondering if he may be suffering from porphyriai - from what I can make out the symptoms sound similar to MS; exhaustion, fatigue, weakness. I was wondering what other peoples experiences of porphyria whilst on CAP were or are.

 

NMR result - nothing new

So today I had NMR brain scan. There is nothing new. No active lession and no new lession. It remains the same as it was a year ago. There are 58 lessions up to size 1cm which seem to be incurable. My first NMR brain scan was done in July 2008, the second in May 2010 and the third today. The second scan said no changes comparing the first one and the third one no changes comparing the second one.

I started with abxi in May 2008, WP in August 2008. But I can't understand during the years I have been on WP I had so much and many bad reactions in my head and there is no change in MRI scan.

12 days after 22 pulse

I am really fine. I haven't been so fine for many years. For a week I have been doing much work at home - 2-3 hours a day. I work and walk extremely slowly but I can work standing or sitting or walking up to 15 m at a time without being tired. When I feel pain in my lower back and hips I just sit down for a few minutes and am able to continue. What's interesting for many years I didn't feel any pain, just had a big problem to walk. I walked much wobbling  for many years. Now in spite of the pain I can walk and no wobbling!!! I touch walls slightly maybe every 2-3 steps (not each step), after the first dose(500mg) of entizol during last pulse I walked 15 metres fast, without touching, balancing and in a line straight without realizing I was walking this way.

Negative Blood Test

Blood test result was negative.

The test was EIA method for Chlamydia Group Antigen IgGi, and I scored 0.070.

GP said that he could not proceed with CAPi without a positive result.  So now he's referred me to a chest physician.

Ho, hum...

weak legs

2 days after 22nd pulse my legs feel extremely weak. If it weren't for my being so stubborn in refusing a wheelchair and if I had one I would use it today. I had to go for a planned check for my hypophysis and it was horrible. Everyone was staring at me as I was walking and I had to walk though my legs felt weak but I don't think that I walked less or even worse than before the pulse but I felt horrible because of weak legs. What's interesting and surprised me much in the first afternoon on the first day of this pulse I could walk 10-11 m without stopping, balancing, wobbling or touching anything, I walked in a line - I am sure I did it this way like a healthy one and then when I realized how and how much I walked I was shocked and scared of it. I can't understand why I was scared of it.

PPMS in New Zealand

Hi

My husband was diagnosed with PPMSi in 2005.  He has had treatment for CCSVI which has helped.  Came across this website and was interested.  Got results back this week which state that he is positive for antibodies for cpni, however no other details at all about it.  It took a month for results to come back, result was via blood test.  My question is this... have protocolsi changed at all from what is on this site.  Are all supplementsi important.  Have gathered NACi, vit D, Vit C, Selenium.  What else is necessary?  Husband is full time in a chair and we are hoping for a positive result.  Any help we can be given will be much appreciated. Cheers  Deb

GP Found!

Good news! I've found a local GP willing to provide support if blood test is positive.  Now waiting on blood test result, hopefully it's positive.

Horseback riding?

I really can't get used to being disabled. Now my parents (in their late 80s) want our small extended family to have a reunion. I can't travel far, I'm tired and weak, can barely walk with a cane or walker, and my balance is not so hot. So naturally, my brother refuses to go to museums where I can be in a wheelchair and wants us to go to a national park. The location he has chosen offers hiking trails and horseback riding. That's all. With weak legs, can I ride a horse? Don't you have to grip the horse with your thighs? There isn't even a lake. Nothing.

pain in lower back and hips

 At the moment when I forgot a cane and walked as a healthy one I felt something happened in my legs. The next night I got a pain in my lower back, I couldn't lie on back because of the pain. This pain I had each night before starting abxi, then after starting abxi the pain stopped and returned only now. Also the next days my hips hurt, something between pain and burning. One morning when sitting and drinking coffee something very pleasant was spreading down my legs / from hips to knees. Down from knees to feet I felt tingling. What's perfect my feet are again better: my walking is from the heel through the feet to the big toe, then I lift my leg from the toe, then the next step with other leg the same. And it works by itself, I don't concentrate on it.

forgot a cane

Today i saw my doc and when coming home I took the post out of the box. When doing this I always lean my cane next to the box in the corner. Then when I was on stairs I realized I had left my cane in the corner. So I went back for my cane. I really can´t understand how I got onto the stairs. There are 2m where there is nothing to touch, just stairs down - a dangerous place for me, then there is a 6m corridor where a handrail is so I believe I touched it but it must have been very slight touching because I really don´t know how I got on stairs. Also I had no problem to go back without a cane. It was like a healthy one walks and he doesn´t realize he walks. So this was a glimpse of light for me and very promising of walking improvement.

Self Medication

I've found it impossible to get any support from local GPs to perform CAPi for treatment of my MS.

Therefore, I'm looking at bypassing the medical establishment and self medicating.

Is there anyone out there doing the same thing and, if so, can you please offer advice on the best way to go about the process.  Also, are there any tests that I should get done along the way so that I can safely monitor progress (eg. blood tests)?

Thanks,

Vinney.

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