This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello All,

Mel's first dose of HicY was April 24th 2008.

So here we are nearly a year on and she had her latest MRI and all is good, well all is excellent.

No enhancing lesions.
No spinal lesions.
No black holes.
Stable and reduced existing lesions.

No signs of activity at all.

The best news is this is the second MRI that states no black holes, when diagnosed she had two black holes (and was used as justification by the Neuro to go straight onto Rebif - he described the MRI's as indication of 'chronic' RRMS). Now I've read many an article and paper that says that black holes are permanent - they must underestimate repair capability. I didn't say too much after the last MRI as it could have been an oversight but this time the absence was actually remarked upon by the MD reviewing the MRI.

Mel's now relapse free since February of 2008 and has recovered nearly all of the disability she'd accrued to that point, mainly: left side weakness, hand tingling, severe double vision in left eye and pars planitis, shuffling gait and extreme fatigue.

Some days are still better than others of course, in very hot weather or very long stressful days she will be come tired and get some ghost symptoms (usually hand tingle or blurry left eye) but after she cools down/sleeps she's back to normal. We explain this to ourselves as the fact that she has no 'back up' wiring like I do, her wiring has good connections under normal load but no real safety systems! It's a sign to cool down or get some rest.

She's learning to manage this but the very fact that she is working more than full time, been promoted at work and we are traveling a lot and all that occurs is a battery drain then we are very, very lucky indeed.

She's been doing so well that we've not had to go to Hopkins for the last two check ups, I think we're going back next month or so and it'll be good to have them do their in depth tests to see where she is EDSS wise and with the reaction tests etc.

There's still move recovery to come, I'm convinced of it - all of this has been with zero exercise or PT. I'm sure once she starts working on that (and I get back into shape too - we've kinda pressed the pause button on life over the last 18 months) then she'll feel even better, that wiring will get stronger and develop back up circuits (I know I am stretching this analogy!) and she can gradually let MS slip her mind.

That's the goal, and I for one and very grateful to even have the opportunity to seek that goal. Eighteen months ago our goal was to 'manage' her disease (how does one do that? By manage I think we really meant 'react' to her disease) as best we could and hope for the best.

For RRMS'ers there is no reason to adopt that stance. There is HiCy, there is Campath there is Chemo+Stem Cell's. Go hard and go early is my advice.

Good luck with whatever you choose.

Jamie

Wonderful news! I am glad you posted it. What a great outcome. I sent my MRI to Kerr about 1 year ago and he said no-- inactive lesions, so he said it would not work for me, but I am glad to hear you had results and I agree that people should consider it sooner than later.

You said
FWIW my neuro who is an MS specialist looking at MRI's all day told me black holes go away quite often. I have one and when it appeared he told me not to worry too much it might just disappear.

Just for the heck of it you may want to try Rush or The doctor from nc to see if they will do it. Sandy had no active lesions either but they still did her. If you have 0 lesions, well, it's different.

Thanks Chris, I am all in for veins at this point, already got tested and have reflux so I will follow that to its conclusion. He was unequivocal, said it will not work. Period.

That having been said, if Dr Kerr had said go I'd have done it. I like revimmune, even though I am not in the "autoimmine camp", for some other reasons, particularly the fact it is not long term suppression, that it has been around a long time and its side effect profile is known, and that it eliminates b cells that hold EBV, and macrophages that might hold CPn.

MS is inflammatory even if it turned out, to be "non autoimmune", so this should be helpful, as it has shown to be for many.

I'm not tying to ignote a debate about autoimmunity just saying why a person who is in that thought like myself might think it good anyway....

Actually, Chris, I had many active lesions despite IV steroids 1 week before the MRI.

I was about to ask you that Sandy.

My response to the non-autoimmune crowd has been (in my head primarily) 'why does HiCy/Campath seem to work then?'

Seem to work in a narrow band of disease classification that is.

Although in my darker moments I often wonder has this just halted the inflammation stage whilst the disease progresses quietly?

My answer is that MS is an inflammatory disease and it knocks out inflammation. Just because it is inflammatory does not mean it is the immune system that started it...

Example, If you have herpes zoster of the eye, which is a reactivation of the chicken pox virus in older age that attacks a whole nerve dermatome, if you want to save the vision you have to give the patient steroid drops and they have to apply them rigorously because the inflammation will damage the eye.

the body is responding with inflammation to a germ in that case, but the inflammation itself is damaging. You have to knock it back or you have a bad outcome with destruciton of tissue and loss of funciton.

My opinion is that MS is probably not autoimmune, but it is absolutely unequivocally inflammatory.

In other words, you have tissue destruciton and loss of function in the brain that is caused by inflammation, but the immune system may have a perfectly good reason to be there............

Back to the topic: I am really happy that your darling had such a good outcome.

It is really good news that something with such a good long term safety record is helpful, I'd do it in a heartbeat if it was offered. Hopefully more clinics will offer it with time.

I'll look forward to your future posts

So you are saying that the method of action of HiCy etc could be the massive anti-inflammatory power of the chemo rather than the immune system rebooting?

But, and I may be missing the point here, if the inflammation is caused by the immune system in the first place (regardless of what it originally reacted to) then isn't that the same thing?

and thanks for the kind wishes!

I plan to keep posting when there's updates.

Well IF MS is not an autoimmune disease then yes. You can't tell what the caues of a disease is by the outcome of treatment, all you can know is whether it seemed to work or not. "Seemed to work" is good enough in this disease.


for argument's sake lets pretend for a minute that MS is that vein thing Zamboni is talking about; You have these stenoses and they cause reflux the reflux damages the brain tissue near the vein just like it does in the lower leg in the case of venous ulcers. Pretend.

So that process happens and the immune system comes along and starts trying to heal the damage. It ignites nitric oxide, adhesion molecules, MMP9 is upregulated and t cells and b cells rush in as part of the inflammation cascade to clean things up. This inflammation is damaging to the brain tissue in addition to any damage the initial reflux might have caused.

So if you knock out immunity so inflammation is not happening, then all that inflammatory damage can't happen. But to whatever degree the intial event can cause damage that damage will go on.

So in the example of mechanical injury from venous reflux, it would be some years before it became clear that some other process was going on if you figure that some portion of the damage is the inflammation itself and that part's been alleviated. Of course it is impossible to tell in this utter fantasy how much of the damage would be "inflammation" and how much would be "reflux".

My guess is that with good immune system suppression, since MS progresses slowly in the first place, it might be many years before it became clear something else is going on.

So in a way, yes, it could be considered as good, but best of all worlds is to find out what causes the immune system to activate (mechanical damage of reflux or........?) and fix THAT and do anti inflamatory measures if still needed.

I said I'd do it in a heartbeat and I meant it. I would perfectly happy sitting in my reboot and waiting for other things to play out.

I think it would be best if we had absolute proof of autoimmunity, in other words the actual antigenic target that is found in all MSers and confers human like MS (relapsing etc) on healthy animals if given to them. Or absolute proof of some other process that is causing the immune system to react (like the vein idea, or some germ or whatever), but barring that, using what works is just practical.

I'm glad you guys went for it!

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