Badgers wonderful adventure in Poland!!!!!!!!!!

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

Postby ComfortablyNumb » Sat Apr 24, 2010 7:18 am

Typical reaction for a neurologist.
It shows that he is more intrested in keeping the drug companies happy than his patients.
During my diagnosis in 2000 my first neurologist was against the drugs and did not recommend them. He went against what I read from and heard that you need to get on the drugs as soon as possible to slow the disease. I went to the MS clinic and was put on Coppaxone and then Rebif by my current nero. They don't even do periodical MRI to check if there is progression just push the drugs.
When I told my neuro on the phone that I was going to Poland in May he just said they were not dealing with any of that here but they would give me a letter so I could travel with my Rebif.
I now think I owe my first Neurologist an appology for dropping him as he was probably the only one I've met that wasn't a puppet of the pharma companies and was working for his patients.
SORRY DR.BEST

Keep up the feeling great Badger just to spite your Neuro. :wink:
Take good care,
Stephen
User avatar
ComfortablyNumb
Family Member
 
Posts: 45
Joined: Sat Nov 28, 2009 4:00 pm
Location: Ontario, Canada

Stopping Tysabri Instantly

Postby MarkW » Sat Apr 24, 2010 8:40 am

Hello Badger,
A word of caution on stopping Tysabri immediately after CCVSI therapy. There is evidence that stopping Tysabri provokes relapses. Obviously there is no evidence on CCSVI and Tysabri. My suggestion is to increase the time period between your Tysabri infusions on a gradual basis. For example, increase to five weeks for two infusions, then increase no Tysabri period to six weeks for two further infusions. Keep increasing the period between infusions until it has reached 8 weeks. At this stage re-assess your MS. I hope your Neuro will allow you to do this.
If you have already been on 4 weekly infusions for more than 2-3 years, this approach is more important as the risk of catching PML increases significantly with time on Tysabri.
My more cautious approach should put less stress on your body as it adjusts to having normal blood/CSF flow in the CNS. I guess that you had low side effects from Tysabri and some positive effects with your MS.
TIMS has a area for Tysabri if you want to discuss the subject with others on Tysabri.
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
User avatar
MarkW
Family Elder
 
Posts: 1146
Joined: Thu Oct 19, 2006 3:00 pm
Location: Oxfordshire, England

HELLO!!!

Postby Badger » Sun Apr 25, 2010 1:23 am

Mark, it has almost been 8 weeks since my last Tysabri infusion so I am going to stay off it. My neuro did say that it is still there if I decide to go back on to it.

I am still improving without any hint of a relapse, it may only be slight things that I notice but it is better than the good days and bad days that I would suffer on Tysabri. Thankyou for the advice though!!
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
User avatar
Badger
Family Elder
 
Posts: 128
Joined: Mon Dec 14, 2009 4:00 pm
Location: Glasgow, Scotland

Pros and cons?

Postby Trent » Sun Apr 25, 2010 2:32 am

It is good to read of the improvements in folk's conditions resulting from the Liberation treatment in Poland - and elsewhere - but I wonder if there is a downside to all this. Are there people who have been through this treatment who are NOT experiencing positive results? I have a sceptical wife to deal with!

PPMS dx 1985.
User avatar
Trent
Family Member
 
Posts: 92
Joined: Tue Nov 17, 2009 4:00 pm
Location: E. Midlands, UK

HELLO!!!

Postby Badger » Mon Apr 26, 2010 2:11 am

I was along with someone with SPMS and he has noticeed improvements but he has also had some bad days. He had 2 blogged jugular veins and had a stent in one and a balloon in the other. He believed that the one that was opened with the balloon had closed over again but he contacted the Euromedic and they asked him to be patient as he will still have some bad days.

The Dr at the Euromedic was correct and he is back to feeling good again, I would say the same to anyone that is going for the procedure!!! :wink:
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
User avatar
Badger
Family Elder
 
Posts: 128
Joined: Mon Dec 14, 2009 4:00 pm
Location: Glasgow, Scotland

Hello. Good days, bad days

Postby Trent » Mon Apr 26, 2010 2:30 am

Thanks Badger.
User avatar
Trent
Family Member
 
Posts: 92
Joined: Tue Nov 17, 2009 4:00 pm
Location: E. Midlands, UK

Klenner

Postby Trent » Mon Apr 26, 2010 1:40 pm

Hi LR1234 I've sent a personal email to you

Trent
User avatar
Trent
Family Member
 
Posts: 92
Joined: Tue Nov 17, 2009 4:00 pm
Location: E. Midlands, UK

:

Postby Badger » Sun May 02, 2010 1:53 am

Hello,

Still continuing my steady improvements, not noticing anything drastic but I went to Loch Lomond yesterday and was walking aroung without even thinking about how I am walking.

I also tripped on a plant pot that was on the ground, just something that I never noticed as I turned a corner, normally I would have fallen or staggered to keep myself on my feet. Not now, I just continue as normal.

It is small things like this that are actually very big for me.

Away to a BBQ today as it is supposed to be a nice day, so MAYBE another chance to test my heat tolerance!!! :wink:
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
User avatar
Badger
Family Elder
 
Posts: 128
Joined: Mon Dec 14, 2009 4:00 pm
Location: Glasgow, Scotland

Postby Robnl » Sun May 02, 2010 2:06 am

Sounds great Badger.........................a BBQ :lol:

Seriously, i'm very happy for you!

Robert
User avatar
Robnl
Family Elder
 
Posts: 426
Joined: Sun Nov 08, 2009 4:00 pm

Postby Johnson » Sun May 02, 2010 2:12 am

Thanks for the update Badger. Good news all around.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby Villagemaid » Sun May 02, 2010 8:29 am

Ahhhhh....Loch Lomand.......want a visitor?????.....lol....I live in Canada, and was over in Scotland in 1992 to complete in Highland Dancing......I so need to get back there....
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
User avatar
Villagemaid
Family Elder
 
Posts: 198
Joined: Sun Mar 14, 2010 4:00 pm
Location: BC, Canada

Postby BalsaBoy » Sun May 02, 2010 2:27 pm

Badger did you get the exact GPS location of the flower pot in case I trip over it tomorrow?
User avatar
BalsaBoy
Family Member
 
Posts: 81
Joined: Mon Mar 14, 2005 4:00 pm

Progress

Postby Trent » Mon May 03, 2010 2:25 am

Badger, it's great to read of your continuing improvements!
It would be good for us to be reminded of how you were before going to Poland, compared to now.
User avatar
Trent
Family Member
 
Posts: 92
Joined: Tue Nov 17, 2009 4:00 pm
Location: E. Midlands, UK

Re: :

Postby Badger » Tue May 04, 2010 12:23 am

[quote="Badger"]Hello,

normally I would have fallen or staggered to keep myself on my feet. Not now, I just continue as normal.
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
User avatar
Badger
Family Elder
 
Posts: 128
Joined: Mon Dec 14, 2009 4:00 pm
Location: Glasgow, Scotland

HELLO!!!

Postby Badger » Wed May 12, 2010 12:21 am

7 Weeks -

I am still feeling great, I sleep like a baby every night and go about everyday without any worry about where I have to walk.

Everone that I meet still notice improvements, even just in my colouring and my speach.

I was in Poland with Tiger Tim and he has finished up on his radio station, after 35 years and is having a concert in Glasgow on Saturday to celebrate his work but also to raise awareness of CCSVI in MS. I will post links after the concert as it will be in the newspapers in Scotland.

:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
User avatar
Badger
Family Elder
 
Posts: 128
Joined: Mon Dec 14, 2009 4:00 pm
Location: Glasgow, Scotland

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service