Page 6 of 6

Posted: Thu Nov 26, 2009 11:30 am
by jam
Thanks Carolew

I have been to the doctor but as usual they are not very helpful!

Anyway, something I am unclear on (stupid of me) but is progressive worse or better than secondary.

I would have thought not so bad but then, I could be wrong.

I hope you don't mind me bothering you but you seem so helpful which I find very encouraging.


Jam

Posted: Mon Nov 30, 2009 5:27 pm
by carolew
there is primary progressive or secondary progressive plus the famous relapsing remitting and the 'benign' types of ms.
Other people here may add (know) other types but those are the main ones.
Progressive means that instead of having relapses here and there, you decline on a gradual basis.
The primary progressive type is often very aggressive and debilitates patients rather quickly. The secondary progressive type comes after the period of time where you do have relapses....
Is this more clear to you. Of course, there are zillions of sites on MS where you can get all the details... cheers, Carole

Posted: Thu Dec 24, 2009 6:50 pm
by redmoon218
Dear Carole

is there anynews? good news I hope

:D

Posted: Sun Dec 27, 2009 8:47 am
by carolew
Same thing that I reported earlier: My double vision when looking to the right, has gone. My stamina is definetely increased (I just did so much in december and over Christmas.... cooking and shopping like I haven'T done in a while). I had a restless leg ssyndrome in my sick left leg and that is gone. My balance is still not great but I am hoping that the stemcells that keep reproducing in my body will eventully help. They had a big job to do in the first place. Also, I haven't had a bladder accident since I am back. Overall, I would do it again... and I just might do that in a few years.... take care , Carole

Posted: Sun Dec 27, 2009 4:51 pm
by redmoon218
good news carolew, hope to be Continued

Posted: Sun Dec 27, 2009 11:53 pm
by Richardk
Dear Carole
Thanks for sharing all your experiences, and I wish you much improvement in the days ahead....I was wondering if you had modified your diet in any way over the past years and whether you felt it beneficial..also, did you investigate the Panama and Costa Rica locations for SCT .....
..I was dx'd w/ SPMS in 1996, EDSS abt 7.5....am scheduled to see Dr Simka in August

Cheers
Richard

Posted: Mon Dec 28, 2009 10:26 am
by carolew
Dear Richard, I did investigate all the sites available for stem cell transplant and eventually chose Germany because I knew that their technique would be good and sterile. Plus, usually, the Germans do things to last... cars etc,,,
As for my diet, no, I have not changed a thing: I still eat meat and have one glass of wine per day... occ. two. I don't like the feeling it does to my balance.
I wish you all the best with Dr. Simka and hopefully the progression will stop for you. Take good care, Carole

Posted: Mon Dec 28, 2009 3:24 pm
by Richardk
carolew wrote:Dear Richard, I did investigate all the sites available for stem cell transplant and eventually chose Germany because I knew that their technique would be good and sterile. Plus, usually, the Germans do things to last... cars etc,,,
As for my diet, no, I have not changed a thing: I still eat meat and have one glass of wine per day... occ. two. I don't like the feeling it does to my balance.
I wish you all the best with Dr. Simka and hopefully the progression will stop for you. Take good care, Carole

Thanks Carole...assuming all goes well w/ Dr S., he will likely ask for a followup abt 2 months later, I may just go for a double whammy and slip over to Germany at the same time for SCT....I've had 13 years of nothing but 'please be patient' from neuros, and now it appears that I have some degree of control over my future...I am lucky that I can afford them, there must be many out there who cannot...in Canada at least, I wld hope that there is rapid research that brings these procedures to all who need them, regardless of ability to pay.

Cheers, and continue your improvement
Richard

Posted: Tue Dec 29, 2009 3:17 pm
by carolew
thanks and good luck Richard.