First relapse since treatment

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

First relapse since treatment

Postby Greenfields » Sat May 21, 2011 10:52 am

Hi all
So in a high stress moment I went for a walk to de-stress.....at the end of the walk. My noggin was hot hot hot...did I mention hot? :lol:
Shortly after stopping and cooling down, my feet and legs up to my mid shin are numb and tingly and I have a band of numbness at the crotch level.....a really odd sensation let me tell yeah :oops: I don't like the feeling that my ass cheeks are glued together.... :roll:
It has been almost a year since I had the CCSVI and up until this little event have been largely symptom free (Headaches gone, fatigue at " normal levels" and Cog fog almost at bay).

So I am wondering what the conventional treatment would be for this (if there is one) and should I try to get in for another angio adventure?

I am leaning toward more angio.

Cheers
Yours in numbness :(
Greenfields
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Postby Filmmaker » Sat May 21, 2011 11:03 am

i do not think this is a relapse, i mean consisting in new lesions...
get yourself some lemon juice, have someone massage your legs and take a bath with epsom salts... the numbness should improve... And stay away from stress...
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Postby 1eye » Sat May 21, 2011 12:25 pm

I agree that it is not a relapse. Heat causes more temporary problems. The worst I had happened when I spent a week in Florida and had to recover for about another week after I got back to coldville. Yesterday I had a lot of trouble at my brother's swearing-in ceremony at Parliament Hill, until I got outside and got some fresh air and water. It was a hot, crowded room and I was wearing a jacket and tie. Oy. I was also dehydrated.

Heat stress that you didn't get before, under similar conditions might mean your problems are returning. I am not sure we can't heal our way out of this kind of situation with good nutrition and exercise. I am in a holding pattern, but then my heat sensitivity hasn't ever gone away yet.

Biked for 1.5 hours today on terratrike recumbent. Can clip and unclip my shoes myself. This is a major milestone for me.
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More info needed

Postby MarkW » Sat May 21, 2011 1:46 pm

It is impossible to say if you are having a relapse with the info you gave, Greenfields. How long have you had your symptoms ? Are they new or previous symptoms ? Who performed your CCSVI diagnosis and de-stenosis ? Can you have a doppler scan easily and quickly ? Is your neuro on side ?

Sorry for the questions. You could be experiencing many things, I hope you will give more details before anyone suggests a diagnosis.

Take it easy and rest as a first step.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Cece » Sat May 21, 2011 2:08 pm

Have you been in for a follow-up ultrasound in the year since your treatment?

There have also been changes in the past year, potentially improvements in the procedure, depending on the IR you choose. I am thinking of IVUS....
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Postby 1eye » Sat May 21, 2011 6:47 pm

Right, of course, hope you didn't take what I said as gospel or something... of course stress, not heat, might trigger a real one, and if you think your symptoms are persistent you should have it checked out. Should have said "probably" based on the heat trigger. I've had mixed results with treatments for "you-know-what" relapses, but it is attempted. You could get followed up for CCSVI too, but maybe not as easily.

Like I have said many times, I ain't no doctor. Just trying to help... Hope it calms down, and you cool off.
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CCSVI procedure Albany Aug 2010
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agree...

Postby bunny82 » Tue May 24, 2011 5:27 am

Agree with everything mentioned here. And just an idea (which might sound strange but I think it worked for me): when I had problems with numbness in my hand I always massaged it with my electric toothbrush. And OK, maybe the numbness would have gone anyway (who can tell?) but I always had the feeling the toothbrush helped. Right, you have a bigger area, but you could still try buying a new toothbrush (for your foot(-: and massage it.

Cece, can I please ask: if I had 'only' 30% and 50% blockage in my jugs and a big one (about 90%) in my azygous, do you also think it's worth going for a check-up? At the end of the day my biggest concern is the azygous and that we can't see anyway... It's just here in the UK it costs about £500 and having recently had my procedure, money is a bit tight these days...
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Postby Cece » Tue May 24, 2011 6:48 am

bunny82, I don't know....maybe ask Dr. Sclafani? The Zamboni doppler ultrasound is said to give information on the azygous, based on the overall flow and also when they examine the vertebral veins. If you were feeling ill or had lost your improvements, it would be a more clear-cut answer. I also can't give medical advice....
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D3

Postby hwebb » Wed May 25, 2011 2:52 am

I'd take some vitamin D3 and lie down for a few hours (so the D3 gets to your jugualrs). Works for me
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Postby bunny82 » Wed May 25, 2011 3:14 am

Cece wrote:I also can't give medical advice....


Many thanks for your thoughts Cece! I know you can't give medical advice but you seem to know so much about the topic, I'm always interested to read your intelligent suggestions... I will ask Dr Sclafani at some point, I think.
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check up

Postby Rosegirl » Wed May 25, 2011 4:14 am

bunny82,

Ask your doctor if you think you need further treatment. You don't want to be one of those people who waits too long and finds that things have scarred over or completely clotted to the point where fixing the problem is difficult to impossible.

Also, perhaps there is some discount to whatever follow up might be required.

But even if it's expensive, don't find yourself in worse shape because YOU didn't have a problem checked out.
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Suggestions

Postby Gordon » Wed May 25, 2011 8:40 am

Blood thinners, lots and lots of water, cold frozen dish towel around your neck and head.

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Re: check up

Postby bunny82 » Thu May 26, 2011 5:57 am

Rosegirl wrote:bunny82,

But even if it's expensive, don't find yourself in worse shape because YOU didn't have a problem checked out.


Thanks a lot Rosegirl, you are totally right! However, I don't have any problems, I was just talking about a 6-month check-up. Hopefully I won't have any problems, but if I do, I won't hesitate for a second and have it checked out. :)
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