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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby wonky1 » Sun Dec 13, 2009 12:15 pm

Hi LR
Yes it was definitely right to have the procedure, at the very least my wonky veins have been corrected and the improvements will I'm sure be back when I can sleep. There is a direct relationship between a bad nights sleep and sliding improvement and a good sleep and regaining improvement.
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Postby Johnson » Sun Dec 13, 2009 1:15 pm

Man, I'm sorry to hear about your roller-coaster ride. The lack of sleep must be doing you in. 3 hours just won't cut it for anyone.

It's weird for me - not enough sleep, and I am grumpy and stupid, too much sleep and I am stupid and grumpy. Maybe I am just stupid and grumpy all the time, and have found the MS to be a great excuse. Laugh.

I really hope that things get better and better for you wonky. It is very encouraging that you feel the op was worth it regardless of current issues.

All the best.
My name is not really Johnson. MSed up since 1993
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Sleep and no sleep

Postby Dovechick » Sun Dec 13, 2009 1:59 pm

I echo Johnson's sentiments Wonky. UTIs are deadly for MS people, I know from Ella's experience. She also gets very wobbly from taking the antibiotics. :cry:
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby whyRwehere » Sun Dec 13, 2009 10:27 pm

And I'll agree with Dovechick. The dreaded UTI...it's become a saga here.
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Postby Mutley » Mon Dec 14, 2009 1:16 am

OMG Wonky, so sorry to hear about that. I hope that you get over the UTI really quick and that you get back on form even quicker. I know what that sh*t feels like and it certainly isn't pretty is it. I hope that your personal stuff is on the mend too.

Take care.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby sunlounger » Mon Dec 14, 2009 1:34 am

Hi Wonky
hope your felling better soon :(
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Postby Pepe » Mon Dec 14, 2009 2:20 am

Hi everybody,

We have been last week in Katowice. Eco-Doppler and MRV show that left internal jugular vein of my wife has no flow. So that, she is a CCSVI'er. We are waiting for a written report with more details...in order to show it to our neurologist. If our National Health Service wants to do the procedure... we will do in our country. If not, we have just decided to go to Katowice.

As everyone said... Dr. Simka is a very good, friendly and generous person. As English is not my language, I have no words to express our deep sense of gratitude to him.

I apologize for not posting before... but I have to work... and, after several days in Poland I have to do a lot of things these days.

As I told before several times, without Erika's posts we probably would not know as much as we actualy know. So... Erika... once more time SO MANY THANKS.

Regards,

Pepe.
Last edited by Pepe on Mon Dec 14, 2009 11:33 am, edited 1 time in total.
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Postby ErikaSlovakia » Mon Dec 14, 2009 4:33 am

Pepe wrote:
As I told before several times, without Erika's posts we probably do not know as much as we know now. So... Erika... once more time SO MANY THANKS.

Regards,

Pepe.

You are welcome. I am happy to do that. :wink:
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Sleep and no sleep

Postby judipom » Mon Dec 14, 2009 5:24 am

Dovechick wrote:I echo Johnson's sentiments Wonky. UTIs are deadly for MS people, I know from Ella's experience. She also gets very wobbly from taking the antibiotics. :cry:


Hello all--I have not had UTI's but my brother who is parapalegic gets them pretty bad. Once he was visiting me and he got one along with fevers and chills--I got him an UTI herbal tincture by an excellent herbalist in my area. It cleared it up pronto and he did not have to go on the antibiotics. Now, he has me bring it to him when I visit on the holidays. He says it works better than anything he ever tried. The herbalist is Suki Roth and this her website http://www.herbhaven.com/Herbalproducts.html
She may be able to ship you some of her UTI tincture.

Good Luck, Judi
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
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Postby wonky1 » Mon Dec 14, 2009 6:40 am

Thanks Judipom
I may give it a try I think I have another starting.
I've just bought some cranberry juice, I'll be trying that tomorrow.
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Postby tzootsi » Mon Dec 14, 2009 7:35 am

Another thing to try is D-Mannose, a type of sugar that allows the infection to be flushed out of the bladder.
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Postby whyRwehere » Mon Dec 14, 2009 8:31 am

Something I've just learned about is Ursa Uvi/Bear berry or in France Busserole. It is probably in that tincture. the nice thing about that is that it is healing as well as killing the infection, while the antibiotics just clear the infection but also can affect the MS making things worse. My husband has tried it, but the problem is, he is still having a foley catheter and it is hard to find a solution to his problem.
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Antibiotics and D-mannose

Postby Dovechick » Mon Dec 14, 2009 9:12 am

Ella takes a profilactic antibiotic as she had continuous E-coli bladder infections for 6 months. She appears to have that under control now. She takes two D mannose tablets a day and that seems to have made the difference, because before the D mannose she was still getting infections in spite of the profilactic antibiotic.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby Johnson » Mon Dec 14, 2009 10:25 am

Cranberry juice does work very well, but be sure that it is pure cranberry juice with no sweeteners (not cranberry cocktail, or such).
My name is not really Johnson. MSed up since 1993
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Postby whyRwehere » Mon Dec 14, 2009 12:37 pm

Dovechick, is that the waterfall D Mannose stuff or some other brand?
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