Gibbledygook's Stents

gibbledygook · Post by **gibbledygook** » Wed Sep 23, 2009 2:01 am

Cheers all! I am latching onto the neurologist's words who said that lesions take 2 to 3 months to develop. Thus those lesions could have been developing just as the operation took place but wouldn't have shown up on the scans taken by Prof Dake. Interestingly since stopping the trimethoprim I have had NO spasms at night and my walking feels much better today...clearly inflammation and cns penetrative drugs, such as trimethoprim, are still going to be problems even with the CCSVI op, perhaps especially if one has a relatively high EDSS. I would think that MS is a mix of CCSVI and immune problems.

LR1234 · Post by **LR1234** » Wed Sep 23, 2009 2:19 am

I think you are right Alex MS is a mixture. That must give you great hope that you are seeing some improvement in your condition today. Maybe the abx were fighting something and you were herxing or something.
I know that abx is for UTI but I wonder what else it does...or what other bacteria it attacks.

gibbledygook · Post by **gibbledygook** » Wed Sep 23, 2009 6:51 am

I don't think it was herxing. I tried the antibiotic protocol for nearly 3 years and never experienced this herxing thing. Trimethoprim can cause tremors in AIDS patients so clearly has powerful CNS effects.

gibbledygook · Post by **gibbledygook** » Tue Sep 29, 2009 8:58 am

Good news:

Yesterday in nearly 30 degrees of heat (I am in Spain) I walked 1.4km with a cane. This is the furthest I have walked since getting MS and losing the ability to walk properly. The furthest I had previously managed during these 5.5 years was 1.1km without a cane and then I promptly fell over. Yesterday I could have probably managed another several hundred meters but a coffee shop was in the way. My walking didn't look/feel too bad even at the end, unlike that time I fell over.

I haven't had any night spasms since I stopped the trimethoprim antibiotic about a week ago. My bladder control has also reverted to post-operational control since getting rid of the cystitis. A slight flare in sensory problems has also abated somewhat.

I can't wait to inform Dake!!!

Loobie · Post by **Loobie** » Tue Sep 29, 2009 9:03 am

Good deal!!!!!!!!!!!!!!

Needled · Post by **Needled** » Tue Sep 29, 2009 9:21 am

Excellent news, so glad to hear it.

LR1234 · Post by **LR1234** » Tue Sep 29, 2009 10:11 am

Amazing Alex, that makes me sooo happy to hear that you are doing better. The sun always makes me feel better so hopefully those positive changes will stay with you when you are back in miserable, cold England!

Have a lovely holiday!!! xxx

Nick · Post by **Nick** » Tue Sep 29, 2009 11:04 am

GG

I am intrigued with the intervention offered by Dake but I am unable to get a response from Alexandra so I hope you can provide me an answer. I too would be an out of country patient as I reside in Canada so my concerns with the acceptibility of a foreigner is obviously addressed by virtue of your admittance.

How much did the procedure cost? Can you also present the breakdown for acomodations, scans and the liberation?

Thanks
Nick

chrishasms · Post by **chrishasms** » Tue Sep 29, 2009 11:22 am

radeck · Post by **radeck** » Tue Sep 29, 2009 11:46 am

Hi Chris, do you think it would be better to do immune ablation a year after or just before the procedure to alleviate the stenosis?
I was under the impression that the consensus of the cascade of events in MS is that:

1) stenosis
2) reflux and pressure increase
3) micro-bleeding and hypoxia
4) immune activation

while step 4 doesn't happen for some reason in progressive (SP and PP) disease.

I think it is safe to say that during RRMS, step 4 creates the majority of the damage, including disability. The main positive effect of fixing the stenosis on people with RRMS, would be in taking away the incentive for the immune-system to kick in in the long term. However right after fixing the stenosis there should still be plenty of circulating T&B cells+antibodies to cause havoc. It would then seem that immune ablation right before the procedure is the way to go.

Correct me if I'm wrong but I think that there haven't been regular follow-up MRI's in the group of Zamboni. Hence we don't know if not many of his patients have had lesions post-procedure.

Sport · Post by **Sport** » Tue Sep 29, 2009 2:43 pm

I don't think it's accurate to say that the immune system isn't involved in SP and PP MS. Otherwise, you would not see the abnormalities in the CSF--elevated IgG, elevated synthesis rate, oligoclonal bands, etc.--that are present in most of these patients.

radeck · Post by **radeck** » Tue Sep 29, 2009 2:53 pm

OK Sport, but that would just extend the thinking that immune modulation could be important pre or post CCSVI intervention. I was simply trying to make the point that it may be more important around the time of the intervention, not much thereafter. The comment about no or less immune involvement in SP or PP was more a side note.

mrhodes40 · Post by **mrhodes40** » Tue Sep 29, 2009 4:26 pm

I'm leaning your way Rad, a little before...with the caveat that it may need to be a while before so you can heal from surgery ya know??

Also please be aware we--HERE-- do not have the full data from the Liberation patients. THEY ARE GETTING MRI's. I know one who has had several....

Alex I am so happy for you feeling better.

Thanks for the great report. God spare us from those night spasms! I'm so glad yours abated. Hopefully gone now. Makes you wonder how long you were harboring that cystitis.

Wow what a long walk, your walk description strikes me that it must be like mine--I can go a longer ways without that terrible stumbling as long as I am not in a hurry and pushing it and not expecting to walk normally. That terrribe moment when the foot just fails and you almost fall--that feeling that if you don't stop now you WILL fall and soon, just doesn't come up like it did for me... I just seem to kind of plod along.

fell over

do you mean you actually hit the ground? after 1.1?

chrishasms · Post by **chrishasms** » Tue Sep 29, 2009 7:47 pm

gibbledygook · Post by **gibbledygook** » Wed Sep 30, 2009 2:40 am

Marie,

I love your descriptions! That's exactly the way to put it: I seem to plod along much more now without that feeling that the foot and leg are just about to stop working altogether. When I managed that long walk a few days ago I probably could have continued in a way that would simply been impossible before as is evident by my fall after my last longest walk at 1.1km. The other notable thing about the walk was the pace and relative absence of halts which I use as if it might reenergize the leg. So walking to the coffee shop 700m from my flat in London would be punctuated by brief pauses in walking as I gather the leg energy to continue. Yet a few days ago I don't think we halted very much at all,walked at a normal pace and just before the coffee shop I even crossed the road to examine better a house's aspect as I wasn't so desperate to sit down that all my thoughts were only on getting to a seat. I'm so excited about this as that previous limit of1.1km has really been a benchmark for me to beat and to be able to assess whether or not a treatment is working or not. So if I can consistently start walking over 1.1km then I'll be in no doubt that this surgery has very significant effects quite apart from the spasms and the bladder control.

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Gibbledygook's Stents

Best walk in 5.5 years!