This Is MS Multiple Sclerosis Community: Knowledge & Support

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.
Take good care,
Stephen

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

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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

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!!

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<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March

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.

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!!!

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<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March

Thanks Badger.

Hi LR1234 I've sent a personal email to you

Trent

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!!!

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<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March

Sounds great Badger.........................a BBQ

Seriously, i'm very happy for you!

Robert

Thanks for the update Badger. Good news all around.

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My name is not really Johnson. MSed up since 1993

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....

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35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos

Badger did you get the exact GPS location of the flower pot in case I trip over it tomorrow?

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.

[quote="Badger"]Hello,

normally I would have fallen or staggered to keep myself on my feet. Not now, I just continue as normal.

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<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March

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.

_________________
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March