Mags is off to Poland!!!!!!!!!!!

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

Postby markus77 » Sun May 16, 2010 12:21 pm

i am telling myself daily that it will take time. patients is needed. 21 years of the brain being attacked needs time to heal. i have seen small changes but need to relax and let nature take its coarse. i TOTALLY understand what you are saying Mags about wanting huge improvements now..............
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Postby mags4short » Mon May 17, 2010 10:45 am

markus77 wrote:i am telling myself daily that it will take time. patients is needed. 21 years of the brain being attacked needs time to heal. i have seen small changes but need to relax and let nature take its coarse. i TOTALLY understand what you are saying Mags about wanting huge improvements now..............


Glad I am not on my own with that one Markus :)

I was a little concerned the other day as my feet were cold, went straight into negative mode, until my daughter pointed out that the fact that I can actually feel my feet being cold was a bonus and that everyone gets cold feet from time to time. I thought oh yes, so they do :)

It will be easier when I get back into my routine and can put it to the back of my mind for a day or two.

I hope that you have many many small changes, which of course will all add up to big big ones :)

Take care,
Magsx
Alone we can do so little, together we can do so much :)
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Postby markus77 » Tue May 18, 2010 5:09 am

today i was sitting at my desk at work and had a little stretch and while stretching wiggled the toes on my left foot. something i have not done in years.
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Postby prairiegirl » Tue May 18, 2010 6:32 pm

Happy to hear of your improvements, Markus! Hope it is just the beginning of many more-- best to you in health and healing!
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Postby mags4short » Wed May 19, 2010 3:44 am

markus77 wrote:today i was sitting at my desk at work and had a little stretch and while stretching wiggled the toes on my left foot. something i have not done in years.


Markus, that is fantastic!!!!

The more I hear the more hopeful I am and as it is hope that keeps me going then that is enough :)

I am feeling a little out of sorts at the moment, but am hoping that it is a time of the month thing ( too much information?) Anyway, I am trying to to get too disheartened at the moment and will see what next week brings.

My balance is still so much better and my head /cog fog is clearing by the day. Just hoping that my arm/shoulder settles soon and that the good weather we have been promised here in the UK is something that I can make the most of. I intend to lie in it, do nothing and relax, instead of hiding in doors and showering every five minutes :)

Here's hoping ( again).

Mags x
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Postby mags4short » Sun May 23, 2010 1:23 am

2 weeks post procedure...

I just wanted to update as something has just hit me. The sun is shining here in Lancashire and I made the most of it yesterday. Decided to do a little weeding in the back garden.

I am aching all over today, but that is good as I realise that I was in the garden all day, weeding, brushing and power washing before going to bed tired but not exhausted, not at all MS fatigue like! Anyway, this may be a one off but I thought that I had better record it in case it never happens again :)

Mags x
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Postby Rialynn » Sun May 23, 2010 5:48 am

Thanks that is great Mags.
It is those little things that make our world smaller and smaller. Having to stay in away from the sun and heat because of exhaustion.
To dream of a whole day of weeding. My flower beds are in desperate need.
I am very happy for you and hope to join you soon :D
Here's to Warm Feet and Rediscovered Sensations :RRMS diagnsed 1998, I am 38.From Barrie Ontario Canada.
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Postby mags4short » Sun May 23, 2010 11:52 am

Rialynn wrote:Thanks that is great Mags.
It is those little things that make our world smaller and smaller. Having to stay in away from the sun and heat because of exhaustion.
To dream of a whole day of weeding. My flower beds are in desperate need.
I am very happy for you and hope to join you soon :D


Thanks Rialynn,

I am really paying for it today. I think that I may just have overdone it, but it was worth it :)

I just hope that I am able to say the same in a months time.

Good luck with your journey :)

Mags x
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Postby esta » Sun May 23, 2010 12:54 pm

hi mags
glad to hear you have ups and downs too. same niggling thoughts about it all coming back when things are down- human nature i suppose.
good to hear your improvements, and your's too markus77-el groaner.
deep down, i have to trust its a slow process and pacience is a must ...
this is from the 3rd roomy on that fateful day...
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Postby mags4short » Fri May 28, 2010 1:21 am

esta wrote:hi mags
glad to hear you have ups and downs too. same niggling thoughts about it all coming back when things are down- human nature i suppose.
good to hear your improvements, and your's too markus77-el groaner.
deep down, i have to trust its a slow process and pacience is a must ...
this is from the 3rd roomy on that fateful day...


Hey Esta,

Yes I agree, having to trust that it is a slow process is my downfall :)

I am hoping to report more changes, the good the bad and the ugly, in a week or so when I have given things at least 4 weeks to settle down :)

You take care roomy and keep the updates coming.

Mags x
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Postby markus77 » Fri May 28, 2010 3:26 am

well roomies. one definite change has been my tolerance to heat. i would say it has been at least a 50% improvement.....
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Postby esta » Fri May 28, 2010 1:10 pm

go markus77 go.
my feet are back to purple, but my head is clearer than the last couple of days...cheez
up down, up down - i'm having flashbacks to buzzing cell phones...
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Postby mags4short » Tue Jun 01, 2010 2:01 am

markus77 wrote:well roomies. one definite change has been my tolerance to heat. i would say it has been at least a 50% improvement.....


Markus that is great. We have only had a few good days here. but I have to say that I made the most of them. I was able to stay out longer in the garden.

Did you notice any more improvements with your toes/feet? And are you still able to put your fingers together without the tremor?

I have a bad cold at the moment and I am left with a chest infection! If the darn infections could be kept at bay I would be more able to look at improvements etc. Although I have to say that my fatigue levels are still much much better, with or without the infection :)

Coming up to a month since our procedure and nearly time to compare notes again.

Take care,

Mags x
Alone we can do so little, together we can do so much :)
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Postby mags4short » Mon Jun 07, 2010 1:15 am

7th June 2010

One month update.


My balance is 90% better than it was before the procedure.

Hands and feet are still warmer, my feet still change colour from time to time, but nothing out of the ordinary really.

I am sleeping well and have more energy during the day.

I seem to have been plagued with infections this month, first a UTI after the catheter, now a chest infection due to a cold. As such I can't really get a real measure of the full benefits as yet, but it gives me something to look forward to :)

My head is much clearer, the cog fog seems to have lifted, although I am finding that as it gets towards the end of the day I can still have problems word finding. But then again I suppose this can be said for many people who are tired?

I am still trying to be realistic and am not looking for miracles, but that does not stop me looking. ;)

I will update again in another month, hopefully the infection will be long gone by then.
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Postby mags4short » Sat Jul 10, 2010 12:47 pm

10th July

Two month update


Hi Folks,

Well it has been two months since my trip to Poland, so I thought that I would update.

So far my feet are still warm :)

My balance was great for a good time, but recently I am noticing that it is not as good. I really hope it is because I have been doing too much ( have been spring cleaning and sorting everything out ) and not that I have restenosed, but I just want to make sure.

I am really disappointed as I have sent two emails to Euromedic asking for a follow up appointment and they have not even acknowledged them.

I am wondering whether my room mate Esta has had better luck than me?

Mags x
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