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Hi from London

Posted: Mon Mar 08, 2010 2:15 pm
by MoJo
I have been reading posts on this site for about 3 months now and have finally plucked up the courage to start posting! Actually I am not sure if it is courage or desperation!!!

I am not new to MS as I was diagnosed 15 years ago!! In that time I have been up and down, but mostly up :) I have had 2 gorgeous boys (unlike most people with MS my pregnancies were a nightmare and I was in a very bad way both times. Since my diagnosis I have always said that MS has made me the person that I am today and that I ought to be grateful as I have achieved things that I may never of done if I didn't have MS. I see things as challenge and if I could do mad things - like standing on the wings of a plane and wing-walking for my 30 birthday - then I am in control of my MS and it is not controlling me!!!

But things have changed over the last 2 years, and not in a good way!! I have had a lot more relapses and symptoms. I had managed to not have to take much in the way of tablets, but I am now on a whole cocktail of drugs!! In October my new neurologist decided that I should start taking a DMD!! Big shock and very scary at the thought of having to inject myself on a regular basis! After a lot of research and soul searching, I eventually settled on copaxone as I am allergic to ibuprofen and aspirin and because all the other treatments cause flu like symptoms which they advise you need to take ibuprofen to counteract it!!!! Anyway 3 months after starting I have had to stop as the skin site reactions were horrendous, welts that covered my entire thigh (and there is quite a bit of thigh ha ha)

So here I am!! I have been told by my MS nurse to consider one of the other therapies!!!!

Any advice will be greatly received. I am sorry this post has turned out so long but I don't actually talk about my MS very often to anyone!!!

Posted: Wed Mar 10, 2010 2:46 pm
by silverbirch
Hi Mojo

Welcome to the site I am also a newbie.

I cant answer your questions - but thought it would be nice to post a hello!! I think we are all hooked on CCSVI

Posted: Wed Mar 10, 2010 8:19 pm
by jozee
Welcome Mojo,

I'm relatively new as well. I've had ms forever, it seems. My first attack at 17, diagnosed at 26. I also have two sons, second pregnancy was hard.
I'm allergic to aspirin as well. Tried copaxone recently. Had the same skin reactions. Stopped after 3 months. I haven't started anything else. It was a really bad experience. I do use supplements, stretching/yoga, and for awhile saw a chiro. The chiro was a good experience. It did seem to help. I'm 46 now and the last 5 years have been tough. I'm neurologist free at the moment. So no pressure to start another treatment. I'm encouraged about ccsvi. My father also has MS, our disease is so similar, we both have had the same reaction to the theory. MAKES SENSE! I think you will find this community very helpful. Hope sharing my similar experience has helped abit.

Jozee