Back from Poland

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

Postby astro » Wed Dec 02, 2009 8:55 pm

wonky1 wrote:4. I no longer choke on food or fluid, even if I rush – From day 1


Hi, everyone!

I'm new here, and didn't think my first post would be about swallowing, but this comment caught my attention. I have had problems swallowing food for several years (especially when I eat too fast), but it never really occurred to me that it might somehow be related to MS. I saw a GI a while back, and he did not draw any connection and in fact had another explanation unrelated to MS.

Have others experienced this symptom?
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Postby ErikaSlovakia » Wed Dec 02, 2009 11:17 pm

astro wrote:
wonky1 wrote:4. I no longer choke on food or fluid, even if I rush – From day 1


Hi, everyone!

I'm new here, and didn't think my first post would be about swallowing, but this comment caught my attention. I have had problems swallowing food for several years (especially when I eat too fast), but it never really occurred to me that it might somehow be related to MS. I saw a GI a while back, and he did not draw any connection and in fact had another explanation unrelated to MS.

Have others experienced this symptom?

Well, I do not have the symptom but neurologists in my country told me I might have it later as it is related to MS.
Erika
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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Postby wonky1 » Thu Dec 03, 2009 2:53 am

Hey Phil
Glad you got back O.K. It was a real pleasure meeting you and co.
A stronger voice is I'm sure a great start. More life force or something like that.
I'm having second thoughts about my user name, according to the Oxford dictionary it means • adjective (wonkier, wonkiest) informal 1 crooked; askew. 2 unsteady or faulty. Nothing about sexual orientation, I am a bit embarrassed to think the rest of the world thinks I'm, and here I'm using the English vernacular, bent.
Right that's that cleared up.
Be really interested to hear of your other improvements Phil.

Oh there is one side affect with the procedure I didn't prepare for.
Uncontrollable grinning.

:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
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Postby Dovechick » Thu Dec 03, 2009 4:05 am

wonky1 wrote:My pride prevents me talking about a well known male M.S. problem that has something to do with lead and pencils - Big improvement from day 1, well kinda medium.


Women don't have lead or pencils but they do have problems in the area where they would be if they did. (does that make sense?)
I'm hoping that your experience will translate in an improvement for Ella too.
When she has had the liberation procedure done I will let you all know.... 8)
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby Robnl » Thu Dec 03, 2009 4:17 am

Wonka,


11. My pride prevents me talking about a well known male M.S. problem that has something to do with lead and pencils - Big improvement from day 1, well kinda medium.



Hmmm....ah, your writing is better! :lol: :lol: :lol:

Great news, question for you:
- how is your balance?
- Have you done any exercise yet...muscle strength??


Regards,

Rob[/quote]
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Postby wonky1 » Thu Dec 03, 2009 6:03 am

Hi Robnl

My balance is as bad as ever and I have not been exercising.
A Doc' advised me to stay away from the gym' until I'm off the blood thinners. Boo, it will be hard to get back.
Ever since I arrived home I have had a UTI though so maybe balance will improve once the antibiotics kick in. I only started them today.
This means that all my improvements were made while my body was fighting an infection. Hopefully tomorrow I can start an unhindered recovery.

I'm eating an apple while writing this and it tastes, well, like an apple.
For years I have been thinking that my supermarket sold flavourless fruit.
Sorry supermarket.
I thought I had a good sense of smell and taste, now there back I feel reborn.
:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
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Dr Simka's contact details

Postby BalsaBoy » Fri Dec 04, 2009 12:08 am

Hi there

James from Scotland, UK here.

I'm glad to hear that you're all doing so well after your procedures. It's very exciting and I'd like to try Poland for myself.

Forgive me if I've missed it somewhere but I can't find email details for Dr Simka in any of the threads.

Thanks in anticipation.
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Re: Dr Simka's contact details

Postby ErikaSlovakia » Fri Dec 04, 2009 12:25 am

BalsaBoy wrote:Hi there

James from Scotland, UK here.

I'm glad to hear that you're all doing so well after your procedures. It's very exciting and I'd like to try Poland for myself.

Forgive me if I've missed it somewhere but I can't find email details for Dr Simka in any of the threads.

Thanks in anticipation.

His e-mail: mariansimka@poczta.onet.pl
This is web page of Dr. Simka in Poland: http://strona.simka.nazwa.pl/
Dr. Simka writes on his web page in English about MS:
http://strona.simka.nazwa.pl/multiple-sclerosis.html
This is the hospital where I had my procedure: http://www.zozmswia.internetdsl.pl/

Erika
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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Postby Mutley » Fri Dec 04, 2009 4:24 am

astro wrote:Hi, everyone!

I'm new here, and didn't think my first post would be about swallowing, but this comment caught my attention. I have had problems swallowing food for several years (especially when I eat too fast), but it never really occurred to me that it might somehow be related to MS. I saw a GI a while back, and he did not draw any connection and in fact had another explanation unrelated to MS.

Have others experienced this symptom?


Hi astro,

As I understand it, difficulty with swallowing is actually fairly common in MS patients. Whenever I get checked out by my Neuro or MS Nurse it's always something they ask me about. I'm fortunate that it's not a trait of my MS problems, but I do know at least two people that do have a problem in that area.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Poland trip

Postby BalsaBoy » Fri Dec 04, 2009 8:08 pm

Thanks for the info, Erika. Think I'll leave it to a good bit after Christmas.

Meanwhile, I'm looking forward to reading more success stories.

James
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Postby wonky1 » Sat Dec 05, 2009 11:51 am

I have an idea, or a hope that perhaps as my Azygos vein was not affected as it is with most primary progressives, then maybe I am not typical PPMS. Maybe this why I am experiencing improvements which are more typical of the RRMS course.
There was mention, which I can't find, of an Italian PPMS patient who has started walking again.
Does anyone know , or suggest how I can find out, if they had Azygos involvement.
My guess and my hope is that they did not. As this would suggest, that these improvements are for real and I won’t return to baseline after 18mths. Having said that 10 days ago, baseline is more than I dared hope for.

:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
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Postby ozarkcanoer » Sat Dec 05, 2009 12:00 pm

wonkey1... Go to this link. The Fondazione Hilarescere now has an email address where you can ask questions :

http://www.fondazionehilarescere.org/eng/hil_risponde.html
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Postby Mutley » Sun Dec 13, 2009 8:30 am

Hi there (not so) Wonky1.

I'd love to hear how you are doing now that you have been back from Poland for a few weeks?

Also wondering how you settled the bill for the procedure? Do you just hand over your plastic at the end and let Dr Simka do the rest?

Best wishes.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby wonky1 » Sun Dec 13, 2009 12:02 pm

Hi Mutley
I have been on a rollercoaster with my health.
When I returned I developed the UTI from hell. A bleeding bladder and clexane don’t mix!
I have also been dealing with a very stressful family situation, I have not had more than 6 hours sleep per night, usually 4.
Oh and when I returned feeling so much better I gave up all medication, including LDN.
I thought maybe giving up LDN might help me sleep, it made no difference, I really miss the endorphins though.
The early improvements which I experienced disappeared one by one, there is a direct relationship between a darkening outlook in my personal life, the amount of sleep I get and my health.
When I get 6 whole hours sleep, the improvements are back but when I wake in the middle of the night then the following day is rubbish.
I was very disappointed when improvements started to slip but my heart soared when they returned.
I had about 3 hours last night and have felt bad all day.
I just need sleep, I may restart LDN too, I’ve been putting that off as I know that will guarantee a week of 2am waking, also improvements will be hard to attribute to liberation.

I didn’t manage to pay in Poland. I thought I could pay via an internet bank transfer using a computer in the hospital but my bank threw a wobbly, I had to do it when I got home. They don’t take plastic.
Good luck with your trip, I’m sure you’ll be delighted, they’re really nice people. Say hi for me.

:) :) :) :) :) :) :) :) :) :) :) :) :D :) :) :) :) :) :) :) :) :) :) :) :)
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Postby LR1234 » Sun Dec 13, 2009 12:05 pm

So Wonky do you think it was still the right decision to have the procedure?
Do you think your improvements will return?
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