sudden but short remissions

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

sudden but short remissions

Postby Rosegirl » Mon Jul 26, 2010 11:25 am

For over five years, I've consistently had great trouble walking due to stiffness and balance problems, and thankfully, that's the extent of my symptoms. But on multiple occasions, just for a few minutes, I could walk perfectly. I could swing my arms, turn circles, everything was completely normal. I never knew why it happened or what made it stop.

For me, the obvious answer would be that it's a valve problem. Stenosis or something pressing on a vein just couldn't explain how symptoms could come and go so quickly.

I was liberated on July 7 when my azygous was ballooned 4-5 times. Since my only problem is walking and I had already had those wonderful short "remissions", I expected to dance out of the hospital, but it didn't happen.

So far, although my feet are no longer purple, any so-called improvements are minor and aren't repeated. It may be that my legs are a little stronger, but it's not enough to really matter.

I'm going to try and get a second opinion that looks more directly at valve and/or flap issues. I read a few months back that Dr. Simka was finding valve/flap problems in more than half of his patients, and I'm not sure that my doctor really looked for this kind of problem. It's sure on my list of questions when I have my follow up appt next month.

I'm surprisingly happy about my status. Maybe it's because I have proof that I had a vascular problem, not an autoimmune disease.
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Postby lifeisgood » Mon Jul 26, 2010 6:06 pm

I had posted this on Dr. Sclafani's thread today and I think Rosegirl thought it might be good for a thread of it's own and so it was "born". So I'll also post it here and see what happens - it is pretty interesting.

Is it possible to have veins temporarily open on their own for an unknown reason which then relieves symptoms?

Here is our story:
About two years ago, on a typical Saturday afternoon, my husband (RRMS for about 20 years) had been sitting for a short while when he noticed for some reason his numbness in his legs felt much better. I was in the room with him and it was somewhat eery, because he had this confused look on his face. He shook his legs, stood up and walked around to experience the feeling of normalcy return to his lower legs. He walked around the house, went up and down the stairs (which he could do before, but he was trying to "test" things out) all very confused about what he was feeling. At the time, he told me that his legs felt normal. It was really something to witness. It gave me goosebumps watching him experience it. It was shortlived though, and within an hour or so, as I remember, he was back to 'his' normal.

Could his veins somehow have moved or twisted so that bloodflow was able to make it through? It was a very "out of body" experience for him. Anyone else ever experience a drastic temporary improvement like this before?
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MS is complex and multi-factorial

Postby MarkW » Tue Jul 27, 2010 2:10 am

Hello Rosegirl,
I would say you have a vascular and immune disease with MS, not either vascular or immune. Fix your vascular problems (this is new so it could take more than one procedure) and wait to see what your body's immune system does in response.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 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 sbr487 » Tue Jul 27, 2010 3:55 am

what an interesting topic -
I many of my posts I have described that I have experienced times when I felt near normal. These generally lasted a day for me. These normal days were many during initial MS period and have since reduced. I hardly experience them anymore.

There are 2 things at play:
our immune system and irregular blood flow. It looks obvious that quite a few irritable symptoms are mainly due to impaired blood flow and looks like these vary a lot. While the symptoms due to immune attack are less obvious but result in neurological issues like ON, disability etc. It is also possible that immune activity happens for a short period (like 2-3 days) and then withdraws, only to reappear again ...
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Postby L » Tue Jul 27, 2010 5:58 am

After a trans-Atlantic flight I felt normal for half a day. I thought at the time that it could possible have been the air conditioning/a purer oxygen supply but I was completely confused by it (I still am).
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Postby cmozena » Tue Jul 27, 2010 6:04 am

I'm so glad this thread was added.

I, too, used to have these sudden moments of normalcy. I recall actually feeling a sense of calm as if my body was suddenly relaxed. Then, presto, I would move about freely.

After several of these events, I realized these would be short lived. So, each time I made full use of this temporary freedom.

Yes. These occurred more often earlier in the disease. Now, not so much.
(diag. 1996 but had symptoms since 1986).

I did just start adult low strength (81mg) aspirin. ..noticed the pulsing sound in my left ear has lessened.
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