I am going for it

carolew · Post by **carolew** » Sun Aug 30, 2009 6:11 am

Just an update. Sort of because I have not noticed much change so far except that I trip less on my left foot. I will keep the faith since it is still too early.... Carole

mtf · Post by **mtf** » Sun Aug 30, 2009 8:00 am

Hi Carole,

It's good to know you are getting better (starting). Only I can say is that I'm the still the same.
Let's hope something comes....

Teresa

curly · Post by **curly** » Mon Aug 31, 2009 4:56 pm

Hi Carole
Thankyou for your reply. If I get accepted I am definitely going to try it, I've tried everything else and feel I have to keep one step ahead of it because I've still got two small children at home and I'm supposed to be helping them not the other way around. Although, it does make your children very conscious of other people's problems and helpful to those people. Silver lining hey?
Good luck and I'll keep posting when I hear anything. Please let me know how it goes over time.

carolew · Post by **carolew** » Tue Sep 01, 2009 2:24 pm

For the first time today, someone I had not seen in 2 months told me I walked better. He did not know about my transplant. It is progress. Carole

curly · Post by **curly** » Tue Sep 01, 2009 3:16 pm

Hi Carole
That is exactly what you want. All improvements from now on can only be in small steps. I've had ms for 26 years and used to improve dramatically with steroids but now when I improve (going to ms physio weekly) then it's just a matter of standing up straighter, not falling into a chair and walking a little better. That is great. Give it time. I watched a friend of mine recover from a stroke at 53 and after one year she is about 60% back to normal which is a miracle really. The body can do wonderous things, you're just giving it a bit of a nudge. I'm excited that we have an option at all!
diana

carolew · Post by **carolew** » Wed Sep 02, 2009 3:01 am

Hi Diana, I totally agree with you. And, I do have to keep up my exercises.
Carole

mtf · Post by **mtf** » Wed Sep 02, 2009 4:58 am

Hi Carol,

Good to hear that you doing better. As for me, after 5 weeks of the treatment in Germany, bladder and spasticity are a litle better. Still exercising but walking is not any better.

regards
Teresa

carolew · Post by **carolew** » Wed Sep 02, 2009 10:59 am

Don't give up Teresa. I was discouraged last week. It takes a long time to make a nerve cell. You (I) have been sick for a long time and the repair cannot happen in 5 weeks. Wait till the 3 month mark and then re-assess. take care all, Carole

mtf · Post by **mtf** » Wed Sep 02, 2009 11:27 am

Thanks Carole,

I wont give up. Sometimes it's a hard...But I'm fighting as you are and trying what is possible.

A Portuguese Doctor who knows a lot about stem cells told me that the treatment we have done is very good to the immune system (to stop progression) and in 3 or 4 months time the best is to transplant neural stem cells (not available right now) to repair the central nervpous system.

regards
Teresa

carolew · Post by **carolew** » Wed Sep 02, 2009 4:19 pm

I always wondered why in Germany, they focused on the CD34+ cells. I thought they were better for the nervous system... but I never asked the question...That Portuguese doctor is encouraging...

curly · Post by **curly** » Wed Sep 02, 2009 9:09 pm

Hi Teresa
Can you tell me if the neural stem cells that you are talking about will be available from the hospital in Germany? Should I wait until they are available? Or do you do both treatments.Thank you.
diana

mtf · Post by **mtf** » Thu Sep 03, 2009 5:27 am

I have been told to go to Germany because they are a European clinic so they have to follow the standards in Europe. The other places (china, Mexico, etc) maybe they are ok but we really don't know what the stem cells are or where they are coming from (especially if they aren’t your own stem cells).

So this clinic is less risky for us, in his opinion. The stem cells from the bone marrow (our own cells) and transplanted by lumbar punction are the best (according to the studies) to stabilize the immune system (our big problem, they say).

I’m in the progressing phase of MS meaning I have to do 2 things (if I can). One is to stop MS to progress and the other thing is try to repair my nervous central system. For the first step I have done the treatment in Germany and to the second one I have to do a lot of physiotherapy and ….3 or 4 months later neural stem cells treatment when available.

The neural stem cells treatment is not yet available (as far as I know).
So, to answer your question, yes I would go again to Germany for the treatment and as far as I can notice, spasticity and leg spasms are getting better. Of course we have no guarantees that this treatment (or any other stem cells treatment) works for us.

Please, let us know about your decision and of course I’ll update if and when I have more news.

Regards
Teresa

curly · Post by **curly** » Thu Sep 03, 2009 2:48 pm

Thanks Teresa
I missed a call from Germany yesterday while I was out and forgot to call back at the appropriate time here as they are 8 hours behind us and I have to wait until 5pm to get their 9am. So will try again this afternoon. I hope they have good news.
Diana

carolew · Post by **carolew** » Sat Sep 12, 2009 9:57 am

Little update: Nothing much new except the foot I can lift off the ground more easily. I have had this disease for 30 years. I am sure the stem cells have a lot to do...
This is week 6 only also. I have to learn to be more patient.

mtf · Post by **mtf** » Sat Sep 12, 2009 10:42 am

Like me. Have to be patient.....