The road to recovery.....

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

The road to recovery.....

Postby Salvatore24 » Mon May 03, 2010 7:06 pm

Ok, I'll start by providing a link to my post in the tracking thread to provide some background info, rather than copy the info into this thread:

http://www.thisisms.com/ftopicp-108350.html#108350

In a nutshell, here's the situation:

22 year old male, living in Melbourne Australia. Somewhat minor cognitive and fatigue related symptoms which started a few years ago. First major relapse in August last year, unable to walk, loss of bladder/bowel functions, basically everything from my waist down. I'm able to walk and jog again (can't sprint though), regained most feeling, still patchy from my knee down. My other symptoms have definitely gotten worse since the relapse though.

I have had the doppler scan, which came back positive for CCSVI. Next week I have an appointment with the interventional-radiologist, but he has been forced to stop performing the procedure (I swear, if I find the twats that snitched on him....) I have hope though, I may be able to travel interstate for the procedure, which is much better than going overseas.

I decided to make this topic because I know how easily posts get lost in the tracking thread. And unless you check back weekly, checking on a particular post, you can't tell which people have given an update.

My symptoms occur daily, and fluctuate/change by the hour, so I will know if I see any improvment. Like i mentioned in the tracking thread, cog fog is my biggest issue. I was ridiculously sharp, quick witted and aware of everything a few years ago, now I just seem to be out of it for most of, if not all day.

I will be able to gauge any cognitive improvments quite well, as I play a rhythym game called DJ Hero regularly. It is similar to Guitar Hero, but it is alot more involving. Here's a video showing someone playing the hardest song in the game, if you watch it till the end, you will see how hard it becomes: http://www.youtube.com/watch?v=xaAjJG-c65o

There's a crossfader which needs to be moved to the left or right. Buttons which need to be pushed to match the beat. The arrows are scratches, where the corresponding colour button needs to be held down, and the turntable needs to be moved in the direction/pattern that the arrows show.

When I bought this game 6 months ago, without being arrogant, I was very good, probably top 20 in the world. At the moment I avoid playing it, due to it being a constant reminder of how much I'm slowing down.

Another thing I might add: Why do I believe CCSVI is linked with MS? Any improvements that I've seen, have been either when:

- I changed my diet (very strict, little to no saturated fat)
- Or when I started training 6 days a week (weights 3 days a week, high intensity cardio/sprinting 3 days a week).

There's alot more snippets of info I wanted to post, relating to changes in lifestyle and how it affected my symptoms, I can't remember them at the moment though.

So this thread is here to post my experience with the procedure, and for me to make daily, if not weekly updates on how I'm doing. I know how eager everyone is to get more updates from patients, and I think more people should be giving regular updates on their condition.
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Postby Rokkit » Mon May 03, 2010 8:35 pm

I read your tracking post too, it does seem like you will know quickly if you are helped. Have you been officially diagnosed with RRMS? Surprising you don't have any visible lesions. I don't either but my symptoms are much less pronounced than yours. I hope you get your procedure and I sure hope it helps.
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Postby Salvatore24 » Mon May 03, 2010 9:14 pm

Hey Rokkit,

Not officially diagnosed. When I was in hospital in August last year, they were leaning towards Guillain Barre or Transverse Myelitis. I had an MRI of the brain & spine, nothing. For those few months in hospital/rehab I felt ok. No other symptoms besides fatigue, and the numbness/lost function in my legs. Coincidently I was also on blood thinners for those 2 months to prevent clots in my legs/feet, due to the inactivity. Then a few weeks after I came home, all the other stuff started popping up. So i had more MRI's on my brain and spine in Jan this year, again, nothing. The neuro said he didn't know what could be causing the blurry vision or other stuff. He said good luck before I left. Yes neurologists are very intelligent, and save alot of peoples lives, but they seem pretty dumb for the amount of knowledge that they have.
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low lesion load

Postby hwebb » Mon May 03, 2010 10:41 pm

I read that people with a "high lesion load" have high jugular stenosis. So if you have a minimal lesion load (or no lesions)....chances are your stenosis is lower down. Certainly true for me...stenosis in the high jugular and a huge number of lesions. Cases like your are proof that CCSVI comes before MS develops.
Yep - neurologists are a frustrating group. So arrogant - yet so ignorant.
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Postby Salvatore24 » Tue May 04, 2010 5:46 am

Interesting info hwebb, I guess lesions are one thing I'm still confused about. I've read on TIMS that some have 20+ lesions, yet their only symptoms are cognitive issues or fatigue. Others have maybe 1 or 2, and they are wheelchair bound. So what do lesions indicate? Damage that cannot be repaired? If their symptoms aren't as bad as a wheelchair bound person, what damage have the 20 odd lesions done?

Just too many coincidences for CCSVI to be written off at this point...
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Postby Opera » Tue May 04, 2010 6:36 am

Salvatore24 wrote:Interesting info hwebb, I guess lesions are one thing I'm still confused about. I've read on TIMS that some have 20+ lesions, yet their only symptoms are cognitive issues or fatigue. Others have maybe 1 or 2, and they are wheelchair bound. So what do lesions indicate? Damage that cannot be repaired? If their symptoms aren't as bad as a wheelchair bound person, what damage have the 20 odd lesions done?

Just too many coincidences for CCSVI to be written off at this point...


According to my neurologist, the co-relation between lesions and symptoms is dependent not only on the number of lesions but also on their location.
If the lesions are located in a certain part of the brain the symptoms may not be as severe as when the lesions are located in another part of the brain.

I wish you all the best with the procedure -Trust you will benefit.
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Postby msjen » Tue May 04, 2010 7:26 am

It would be based on the lesion location because I have about 35 lesions and am only walking with a cane through this relapse. Hopefully I'll get rid of the cane at some point, but it is slow going because the solumedrol makes me dizzy so I just quit it. I haven't lost cognition either so I've probably been lucky that lesions aren't in a damaging spot.
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Postby Algis » Tue May 04, 2010 8:03 am

I have 2 "non-active" lesions only (in the brain) and am triplegic (legs and right arm). Therefore I really think location is all that matter...
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Postby Salvatore24 » Thu May 06, 2010 5:02 am

msjen wrote:It would be based on the lesion location because I have about 35 lesions and am only walking with a cane through this relapse. Hopefully I'll get rid of the cane at some point, but it is slow going because the solumedrol makes me dizzy so I just quit it. I haven't lost cognition either so I've probably been lucky that lesions aren't in a damaging spot.


Hopefully you'll get through this relapse. I know it's hard, but you need to use your limbs as much as you can. My legs are numb and weak constantly, but somehow I force myself to exercise everyday.

Algis wrote:I have 2 "non-active" lesions only (in the brain) and am triplegic (legs and right arm). Therefore I really think location is all that matter...


Sorry to hear. So even having lesions in the brain can affect the limbs? I thought only spinal lesions affected legs, bladder etc.
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Postby BELOU » Thu May 06, 2010 6:08 am

I believe it's a matter of location as well. I have 3, still EDSS:0 and some numbness in my tongue after 6 years. I just hope that most of us will have CCSVI.

MAB
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physical and brain training

Postby Stayfit » Thu May 06, 2010 7:01 am

Concerning your comment that you are still exercising despite your weakness. Exercise is counter intuitive since exertion can bring on exacerbations. So I never push. work on repetition and specific muscle groups where I have identified atrophy or weakness. My experience is that muscle and strength does come back along with stamina over time. Not perfect but real improvement . Wonder how this applies after ccsvi treatment?
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Re: physical and brain training

Postby Cece » Thu May 06, 2010 11:57 am

Stayfit wrote:Exercise is counter intuitive since exertion can bring on exacerbations.

I am careful about this too. I relapse and remit so I use my remissions to build back as much as I can. No during the relapses, though. Was it Swank who laid out the exercise plan that had some exercise, then ten minutes of flat rest, then exercise, then flat rest? It was from the 70s, whoever it was.
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Postby Salvatore24 » Thu May 06, 2010 5:27 pm

I've had the opposite result. Whenever I'm inactive, or laying around the house all day, I have more symptoms. Sure, I get fatigued after I go for a jog or do some weight training, but I feel better in general for the rest of the day.
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Postby msjen » Mon May 17, 2010 6:13 pm

I think incorprating some sort of movement even though it may not be termed as exercise is a good idea. I definiteley don't want to loose it!
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Postby Salvatore24 » Tue May 18, 2010 4:56 am

Just been reading up on Transverse Myelitis, one of 2 possible diagnosis I was given last year:

Taken from Wiki:

This demyelination arises idiopathically following infections or vaccination, or due to multiple sclerosis. One major theory of the cause is that an immune-mediated inflammation is present as the result of exposure to a viral antigen.


In some cases, the disease is presumed to be caused by viral infections such as cytomegalovirus (CMV) and has also been associated with spinal cord injuries, immune reactions, schistosomiasis and insufficient blood flow through spinal cord vessels


I'm still baffled by all of this. I had no lesions on my spine in August when I had my attack, I had another MRI in February, nothing, yet I still get L'hermitte's sign? Also, I tend to only get when I have been lying on my stomach watching TV, with my neck bent upwards. Coincidence?
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