I am going for it

flipflopper · Post by **flipflopper** » Sun Oct 25, 2009 2:36 pm

I’m very happy to hear that the stem cell procedure seems to have helped you Carole.

I have to say that I think you have been pretty lucky so far if your EDSS is 3.5 and you are still working full time after 30 yrs with ms!

All the best,
FF

carolew · Post by **carolew** » Wed Oct 28, 2009 12:53 pm

Hello FF, well, I think I could be worse but I am still not walking too well. But, I am walking....
Nothing else out there for me so I went for the sct. You and I had discussed the fingolimod which I did try. But,,,too potent for my lymphocytes so I had to stop the study. Don't know what the future holds.. goof luck. Carole

flipflopper · Post by **flipflopper** » Sat Oct 31, 2009 9:04 am

When I wrote the post, I was just momentarily comparing my EDSS after 10 years with RRMS to your EDSS. My EDSS is pretty much what yours is after 30 years (and I just daydreamed for a minute or two about how great it would be if I remained stable for the next 20 years).

Of course ms is not a good thing to have and like you pointed out, there is not much available for SPMS. I really hope the stem cell procedure will have made a positive impact for you!!!

carolew · Post by **carolew** » Tue Nov 03, 2009 4:01 am

thank you FF

jam · Post by **jam** » Tue Nov 03, 2009 3:05 pm

My husband is going to a seminar tomorrow night about stem cells which is carried out in Germany. I just hope it isn't all hype. I am primary progressive - I can still walk short distances but my balance amongst other things is compromised.

I hope you continue to improve - it sounds as though it is the best option we have!!

carolew · Post by **carolew** » Tue Nov 03, 2009 5:29 pm

Hello Jam, do not expect any en encouragement from the seminar. Nothing is proven yet so they have to be prudent. It is all anecdotal to the medical community. Best of luck and be safe. Carole.

carolew · Post by **carolew** » Thu Nov 05, 2009 10:51 am

Anything new from the seminar Jam?

jam · Post by **jam** » Sat Nov 07, 2009 4:00 pm

Sorry, I haven't posted earlier - been so tired. They suggest trying colustrum products first and then the stemcell treatment. Aooarently there is an Australian women - they played a video who has it - she has done well. I have tried so many vitamins and crap that I think the stemcell treatment is the only way to go. I would like some relief from the tiredness and obviously walking better so my leg fucntion will be improved. I think I will just have to bite the bullet and go for it so any advice would be apprciated.

carolew · Post by **carolew** » Sun Nov 08, 2009 5:16 pm

Perhaps your best bet will be to read over the messages in this topic . I think it is a safe procedure. I went where I believed the procedure would be well done i.e. in a sterile and proper method. Several countries are offering it. I just did not want to wait until it would come here... good luck. Carole

jam · Post by **jam** » Mon Nov 09, 2009 12:14 pm

I am advised to try the colustrum/stemcell products first and then after seeing how that goes go to Germany.

I am off to another seminar on Thursday to hear this woman talk who has has MS and been on the product with a lot of success. She was not granted the stem cell procedure due to having had cancer. She is now apparently out of her wheelchair ... Anyway it sounds a bit rich but I will go and speak with her. I have nothing to lose.

I will keep you informed.

Jam

carolew · Post by **carolew** » Tue Nov 10, 2009 4:42 pm

thanks Jam

carolew · Post by **carolew** » Tue Nov 24, 2009 4:43 pm

Update: sorry for not posting more often, I am crazy busy lately with this H1N1 business (I am in the medical field). My improvements continue. My double vision (when looking to the right) is still gone, it returns when I am exhausted and it scares me very much. It goes back to normal as soon as I close my eyes for a few seconds.
My balance is still not perfect at all but I bought a Wii and I can now exercise a lot more with this.
I am able to work much longer and harder (walking and balancing) then I used to. My restless syndrome ( in the weak left leg) is just about disappeared. My bladder control is much better... I can attend evening seminars at least once a week. I can squat without twisting my left ankle.
I just feel more stable over all. It is hard to give a 'number' to these improvements. It is once I have done it that I realize that I could not before.
take care all, Carole

patientx · Post by **patientx** » Tue Nov 24, 2009 5:07 pm

Good to hear Carole.

jam · Post by **jam** » Wed Nov 25, 2009 12:27 pm

Carolew just wondering what type of MS did you have RRMS or Progressive?

My left leg has been extremely painful over the last 5 days. It really hurts when I put any pressure on it. I just hope it will improve and is temporary. I did have it x-rayed to make sure I did not have a stress-fracture, but I don't.

I am still waiting to hear from Germany re the transplant but I have to say they are extremely slow!

KEEP HEALING!

Jam

carolew · Post by **carolew** » Wed Nov 25, 2009 1:06 pm

Dear Jam, I am secondary progressive. Have been affected by MS for a long, long time. The stem cells have a lot of work to do.
I wrote back to my patient consultant because it was taking a long time for me too. They are very busy he told me back then.
I hope your leg gets better but you know, there are many other reasons to explain a leg pain. Check with your doctor.
Keep well, Carole, thanks for the encouragement

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