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blitzi

Post subject: Re: Number of lesions vs disability

Posted: Mon Nov 09, 2009 10:34 am

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Posts: 16

ozarkcanoer wrote:

My sleep went nuts and my vision went double in the summer of 2006. That fall my PCP sent me to get my first MRI and then lickety-split to the MS neuro. I was told I have 40 some lesions !!!! OMG OMG OMG !!! Double vision doesn't hurt it's just an annoyance. So I asked the neuro, how about my sleep ?? Does that have anything to do with MS ??? NOOOOOO he said. OMG OMG. So I said NO to the lumbar puncture. One year goes by. Back to the neuro. He said I have 40 some lesions. I said what about my sleep. NOOOOOOO he said. Well my head was going bananas. So I had that lumbar puncture. Guess what !!!! I HAVE MS. I have 40 some lesions but I walk and have no problems below my neck. Nothing at all. But my head... headaches so bad I want to die. Still can't sleep. I'm nuts.

But the issue is, how can I have 40 some lesions yet NO physical disability ????

I have almost similar situation, I have about 20 lesions and NO physical disability at all. Some headaches, vision problems and numb on fingers and toes but I can move normally.

So number of lesions do not have anything to do with the progress of MS IMO.

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radeck

Post subject:

Posted: Mon Nov 09, 2009 10:42 am

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Deleted because accidental double post.

Last edited by radeck on Mon Nov 09, 2009 1:08 pm, edited 1 time in total.

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radeck

Post subject:

Posted: Mon Nov 09, 2009 10:42 am

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Hi blitzi, ozar, now you piqued my curiosity, when you say you have 20-40 lesions, what size do these lesions have? I have many small white dots that were called lesions but wasn't given a diagnosis of MS based on "dissemination in space", because only 1-3 of them are >3 mm. So I take it that a lesion has to be larger than 3 mm to count as true MS lesion. Can you guess, based on looking at your MRI's, that your 20-40 lesions are as large as that, or are you including non-MS lesions in your counts?

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blitzi

Post subject:

Posted: Mon Nov 09, 2009 10:49 am

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radeck wrote:

Hi blitzi, ozar, I'm curious, when you say you have 20-40 lesions, what size do these lesions have? I have many small white dots that were called lesions but wasn't given a diagnosis of MS based on "dissemination in space", because only 1-3 of them are >3 mm. So I take it that a lesion has to be larger than 3 mm to count as true MS lesions. Can you confirm this?

I have one 12mm and one 8mm lesion and rest is smaller, 5-1mm I think.

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ozarkcanoer

Post subject:

Posted: Mon Nov 09, 2009 10:50 am

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Joined: Thu Oct 15, 2009 3:00 pm
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Location: St. Louis, Missouri

radeck... I have seen my MRI. I am NOT an expert at reading it al all. But when I page through the slices (I have the MRI CD) then BLING... the spots pop into view. Golly so many !!!! I only have my neuro's word for it about the number of lesions being about 40. I se my neuro on Thursday and I plan on asking for the MRI report. My neuro said my lesions are small, but many. Every time I visit him I always ask : " are you really really SURE I have MS ?". He always says "You are a classic case".

As for my EDSS, well, if you ask me I would say 10. Dosen't wanting to die from headaches and fatigue count even though I can walk and do yoga ??? But I gess my neuro gives me a low EDSS score.

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blitzi

Post subject:

Posted: Mon Nov 09, 2009 10:56 am

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ozarkcanoer wrote:

As for my EDSS, well, if you ask me I would say 10. Dosen't wanting to die from headaches and fatigue count even though I can walk and do yoga ??? But I gess my neuro gives me a low EDSS score.

And yes, for EDSS, I dont even know how it works, but I can run half marathon and I train on gym 4 times per week so I gess I am quite good condition right now.

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kinga

Post subject:

Posted: Mon Nov 09, 2009 10:57 am

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Joined: Tue Oct 13, 2009 3:00 pm
Posts: 68

Radeck-
thank you! (I was starting to think that I'm most stupid person on this forum

)

Ozark-
I really understand You! I also hear and feel rush of blood in my head-almost always,and when my headache is on its also very loud.My cardio gave me pressure drug to use it in case of high BP and it takes away high BP,headache and bad pounding inside my head.Then I discovered that this drug dilates all blood vessels and stops inflammation! and then I have discovered that some kinds of high blood pressure drugs are used to relieve ms symptoms ( its somewhere on this forum also) checked flyer of my drug and bingo! went back to my cardio,asked him about this chain :ccsvi-headaches-attacks of high BP and he said its possible its all linked...so if I may advice You ...try to check your BP during attack of headache.

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radeck

Post subject:

Posted: Mon Nov 09, 2009 11:13 am

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Joined: Mon Feb 16, 2009 4:00 pm
Posts: 398

Hi kinga, I think the high blood pressure drug people discussed on this forum you're referring to was Lisinopril, which is what I'm using. I'm not taking it for it's BP-lowering properties though (I'm not sure this aspect of it is beneficial in CCSCI), but because it happens to reduce the effect of the most problematic part of the immune system to near zero in rodents, and very likely also in humans (since the process by which it does so is well understood, and relevant property of the immune system is very similar in humans). You can see a link to the relevant publication in my tracking post. Anyway, this is just another attempt at treating the consequences of CCSVI, not the root of the problem (the blocked venous outflow from the CNS).

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kinga

Post subject:

Posted: Mon Nov 09, 2009 12:29 pm

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Joined: Tue Oct 13, 2009 3:00 pm
Posts: 68

Radeck-
i'm using the same drug( under different name but still the same ingredients).Cardio said it dilates blood vessels thats why(probably) it helps stop my headaches...well if it helps fight ms too..thats great,isn't it?even if its only treating consequences ...taking this drug I really do feel better,while Avonex makes me sick for at least two days and I actually feel a lot more msy than before avonex therapy :evil:

now I'm going to educate myself a little and read Your tracking post

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ErikaSlovakia

Post subject:

Posted: Mon Nov 09, 2009 12:43 pm

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Joined: Wed Jul 29, 2009 3:00 pm
Posts: 1099
Location: Slovakia, Europe

kinga wrote:

(I was starting to think that I'm most stupid person on this forum

)

Oh no, Kinga I have exactly the same problems with BP, headache and I also take Lisinopril. I think many MS patients have it.

_________________
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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kinga

Post subject:

Posted: Mon Nov 09, 2009 1:07 pm

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Joined: Tue Oct 13, 2009 3:00 pm
Posts: 68

Thank You Erika! hope after procedure it all will go away and will not come back! Wish You the best!

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radeck

Post subject:

Posted: Mon Nov 09, 2009 1:51 pm

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Joined: Mon Feb 16, 2009 4:00 pm
Posts: 398

Kinga and Erika, I think you may find that the paper is impressive, because the mechanism of lisinopril is so well understood (which of the approved drugs can claim that?), because they show that it makes sense that it would not only work in the animal model but also in ccsvi/ms, because the rodents didn't have compromised immune systems under the drug, and because it turned out way more effective in reducing immune system mediated damage than currently approved drugs did. I have been wondering if one can see a trend toward reduced progression inhigh blood pressure MS patients, because a fraction of them will naturally be on this drug. How long have you been taking it?

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kinga

Post subject:

Posted: Tue Nov 10, 2009 12:07 am

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Joined: Tue Oct 13, 2009 3:00 pm
Posts: 68

Radeck-
I'm taking it about a year,but only once or twice a week,when my BP is high.When I was taking it daily my BP was so low that I was not able to live normally.My ms condition did not worsensed ,practically no progression in ilness course,only one new small lesion but without significant neurological deficit (great,this is not an english word I think :?:

) But I think its hard to say if its due to BP drug,avonex or natural course of ms...one thing I can say for sure: I really feel much better after bp drug-its a pity I can not take it daily...

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ErikaSlovakia

Post subject:

Posted: Tue Nov 10, 2009 2:30 am

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Joined: Wed Jul 29, 2009 3:00 pm
Posts: 1099
Location: Slovakia, Europe

radeck wrote:

I started only I think 2 months ago. I was taking Vasocardin. As soon as I new about it I started. My cardiologist did not have anything agains it.
But it will be very hard for me to say why I feel better, I take LDN, I sleep on inclined bed, I have a stent since Nov. 3, I naver had Copaxone, Interferons or Tysabri. I take 5 mg a day. In Poland I did not tske anything. My BP was 120/80 and once even 100/60. I was so relaxed there. It was a real holiday for me!
Erika

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kristab

Post subject:

Posted: Mon Nov 23, 2009 1:43 pm

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Joined: Sat Nov 21, 2009 4:00 pm
Posts: 2

This all looks so familiar, I could have written these posts myself! Erika, I often sleep with 3 or 4 pillows propped up behind me (I'm practically sitting upright)! I've described to my neurologist a swooshing sound, like a bag of sand, in my head. The fact that CCSVI contributes to my headaches makes so much sense - I can't wait to get to my neurologist to talk with her and hopefully try out Lisinopril. I will print out Dr. Zamboni's study and take it with me - surely she will read it!
I too don't have the typical "look" of an MSer, physically, but I suffer the fatigue, headaches, bladder and bowel problems, and I am starting to suffer from double vision.
I am searching for information about physicians that are performing the stent surgery, if anybody can help.

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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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