I can run!

raven · Posted: Fri Jul 18, 2008 10:07 am Post subject: I can run!

It may seem like a funny thing to get excited about but I haven't been able to run since 2002-3. At times a slow shuffle was the best I could manage.

Recovering enough to be able to run again always seemed to be out of reach.

Today I got caught in a sharp, heavy rain shower. Without thinking about it I just took off for cover. It was only when I was out of the rain that I realised what I had done.

Okay, I'm not gonna be worrying Linford Christie any time soon and my steps were certainly lumpy but for me it is a huge milestone.

The fact that I am still slowly improving 2 years after my final treatment gives me great hope for the future.

I really hope that all the new Campath patients who are posting now get the same results that I have had.

Robin
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Do not go gentle into that good night.
Rage, rage against the dying of the light.

bromley · Family Elder Joined: Sep 11, 2004 Posts: 1838

Robin,

Good news.

We (the British) may well need you as a reserve for the UK Olympic track and field squad.

I'll dig out my running shoes and we could become the new Coe and Ovett.

Ian

CureOrBust · Posted: Fri Jul 18, 2008 9:15 pm Post subject: Re: I can run!

raven · Posted: Sat Jul 19, 2008 4:55 am Post subject:

CureOrBust · Posted: Sat Jul 19, 2008 6:01 am Post subject:

Lyon · Posted: Sat Jul 19, 2008 8:47 am Post subject:

Congratulations and thanks for sharing the information Robin.

Looking at the situation clinically in nothing more than a brainstorming sort of way, it's very encouraging to see that stopping the disease process initially shows encouraging results....seemingly by shutting down inflammation and thereby ending symptoms which had been caused by inflammation.

Now I find it encouraging that it seems that healing continues longer term, albeit a slowed pace and that this longer term healing, either or in combination, seems to involve re-routing of signals, effective myelin regrowth and/or (maybe?) re axonization and reduction of atrophy.

It will be interesting to see the brain autopsy results of someone many years post treatment.

Seeking volunteers for brain autopsy........

Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.

robbie · Posted: Sat Jul 19, 2008 9:46 am Post subject:

glad your doing so well Robin, it must be amazing to be in a position to beat this shit, good news so many will be inspired.
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~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out

raven · Posted: Sat Jul 19, 2008 3:24 pm Post subject:

Thanks Robbie.

I must admit that I was in two minds about posting at all.

I know full well that there are many who read this board who are unable to participate in something like the Campath trial. There are also many who's disability is far worse than anything that I experienced. I didn't, and don't want those people to think that I am crowing "I've beaten MS" when they still suffer. Whether I have truly beaten MS is something that will take many years to determine, however I am enjoying the respite that I have been given.

On the other hand I also believe that Campath is a very important advance in the treatment of MS. By making public my experience so far, perhaps it will give those who are suffering this awful disease some hope that treatments are continuing to be developed that stand a real chance of if not beating, at least holding at bay the relentless progression.

It was a close call but I decided upon the latter.

p.s. The jog was great, definitely a bit 'lumpy' but at least I didn't eat turf Smile

_________________
Do not go gentle into that good night.
Rage, rage against the dying of the light.

robbie · Posted: Sat Jul 19, 2008 4:41 pm Post subject:

thanks raven, there are lots of people i'm sure that want to know about the treatment your on and how your doing and i too like reading and hearing about you. you were here when i started and it's just good.i hope you can run like the wind some day. rob
_________________
~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out

CureOrBust · Posted: Sat Jul 19, 2008 8:21 pm Post subject:

raven · Posted: Sun Jul 20, 2008 7:39 am Post subject:

Lyon · Posted: Sun Jul 20, 2008 7:50 am Post subject:

raven · Posted: Tue Jul 22, 2008 8:51 am Post subject:

Ahh yes, David rather than Paul, must've got a few wires crossed there.

Cure - As I was in Cambridge talking to the man today I thought I'd pose some of your questions. The first patients were treated in 1991 however it was first tried on those who were in the late stages of MS where it was found to be largely ineffective. Treatment of RRMS patients goes back 9 years. Those patients are still being followed. So far 700 patients have been treated, at this stage there are no indications that the treatment is a temporary respite rather than a lasting reprieve.

On the downside one patient has developed lymphoma. This is a known risk with Campath. The patient was treated 3 times with the last treatment 4 years ago. In my opinion the benefits I have had compared to a 1:700 risk were well worth it.

Robin
_________________
Do not go gentle into that good night.
Rage, rage against the dying of the light.

freiguy · Family Member Joined: May 18, 2008 Posts: 28

One would have to wonder if it was really caused by the campath directly. Who knows?? Raven, when you say 700 patients does this mean the patients that were treated exclusively in England? Do you have any information regarding how many patients got a third round of campath?

raven · Posted: Tue Jul 22, 2008 9:17 am Post subject:

Hiya,

Of course it's impossible to say that Campath was responsible but the patient had no 'risk factors' what they would be for lymphoma I don't know but it is being assumed that Campath was responsible.

I believe that it's 700 patients worldwide but I could be completely wrong (I frequently am!). I don't know how many patients got a third dose. I believe (see above caveat) that initially 3 doses was the norm but was changed to 2 with a third only being administered if found to be necessary.

Robin
_________________
Do not go gentle into that good night.
Rage, rage against the dying of the light.