This Is MS Multiple Sclerosis Community: Knowledge & Support

What a great update! Thanks, Cinna, and welcome to TiMS.

Thanks for the welcome!

pklittle, yes, I did have an awkward MS gait before and post stent my friends and family tell me I walk normally, except when overtired. I walk without assistance but tend to avoid going for a walk alone at night, or when overtired. My husband has been my cane on many occasions. I used to use a cane seat when I went out as I find standing worse than walking. As for balance, post stent, on a good day I can easily walk heel to toe for 25 steps or more and can stand on one foot and slide my heel down my other shin--haven't done that in more than 20 years and wasn't able to do it after my first procedure. Again, when overtired I can't do these 2 things nearly as well. I hope you start to notice improvements soon! Did you have ballooning done 4 weeks ago, as well as the stent?

I have (like many people, I presume) had the procedure once. It was azygos and jugulars only, no stents, no IVUS. No renals or iliac, May-Thurner's or any other veins. Probably restenosed in at least one IJV. Still have deep cerebral vein problems, I think.

You will not get me to say anything against it, as it did help me, and the benefits, while partly gone now, are still there to a large extent, for me. I believe it saves lives, when they are at risk from "MS" or CCSVI. There is also another good thing it is probably enabling, in my one-man anecdote.

I am 57, and assessed at EDSS 6.5-7. I have three stents in my chest from angioplasty after a heart attack. I may still be 'progressing'. I wouldn't know without MRI. I have gone from a wheelchair back to my walker. There is something else, and I can't tell you whether this is due to the procedure or not: I am getting stronger and faster. I am now at a gym, threatening to be there 3 times a week. When I can't go I try to do some homework. Where I regressed and could not improve my walking or strength for some years, I am walking faster now and definitely can move more weight on the machines at the gym. My atrophic muscle mass is starting to return. I know many cannot afford these high-tech things, but if you can do it safely, I recommend weight and aerobic training. I may walk with a cane again yet.

I haven't fallen for months. Haven't badly bruised in maybe six. That is partly balance and partly speed (I can catch myself). I was black and blue, from nearly daily serious falls, just over a year ago.

My recumbent tadpole trike is very low to the ground. A couple of years back it was a very dangerous and time-consuming operation just to get in and out. Now it takes seconds, I squat in and out, and I can mostly do my own cleat shoes. I usually accept help, because I don't have enough strength or feeling in my left lower leg. I can stand the hot sun because I use a soaking wet do-rag on my head, and a neck cooler which has water-retaining gel crystals, also fully wet.

I did get a skin infection from going backwards into a ravine when my chain came off going uphill.

The trainer, Triana, was in a car accident as a teen, and couldn't walk. By studying kinesthesiology, and exercise, she has brought herself nearly to 100%. She still wears an AFO sometimes, but not often. Kinesthesiology, in spite of what Snopes says, is like physiology, and there are degree-granting schools that offer it in Canada.

I still have lots of problems, which take a terrible toll on my family, too, but I am working on it

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

yes, I had ballooning in the right ijv and azygous. I have a closed up segment in my left ijv that the Dr tried to open but couldn't.

Hello Cinna and welcome to TiMS,
I hope you continue to post your reflections on the changes post India and Brooklyn. EDSS of only 2.5 after 20 years of MS, I am envious as mine is 6.5.
Kind regards,
MarkW

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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