The Science Group

Comment

Comment by Nicky, Riley & Boris on March 3, 2012 at 3:34pm

Since we now have a Science group perhaps we should have a Hokum group too?

; )

Comment by F, Calla & Luca on March 3, 2012 at 2:48pm

I am glad you got on a good solution early. The goat dung gave me a chuckle. Hokum at it's finest.

Comment by Nicky, Riley & Boris on March 3, 2012 at 2:36pm

I'm lucky in that the first attack was diagnosed as transverse myelitis which really is a description of one serious lesion.  A diagnosis of MS has to be multiple lesions but I had a really great neurologist who decided to treat me as if it was MS and put me on a very new (eight years ago) drug which is actually 4 enzymes which I inject every day.  It repairs and my immune system destroys. I haven't had another major attack since that first one though that did do quite a lot of damage.  Hands/ feet and some pain plus I get pretty tired some days.  But since I was diagnosed I have trekked twice in Brazil doing 150 kilometers each time and have done lots of hill walking here. The diagnosis was confirmed later on when I had a second MRI but the treatment I am on needs to be given as early as possible following the first attack.  I remember asking my Neurologist who had recently returned from Boston what his mates in the US were prescribing for MS and he said Copaxone the other choice was Beta Interferon which was also injectable but had pretty horrible side effects plus I thought it was a spray and pray drug so I said to him I'll take the Copaxone please! He said I don't want to see you back here anytime soon.  I had spent three weeks in hospital and went home in a wheelchair.  It took me three months to get up and out of that chair.   We have a system in Ireland that for long term illness the drugs are free so that's very lucky because this high tech stuff costs a lot of money : )

I know there are some new drugs coming along and I remember my Neurologist saying to me that if I needed something else later on that it would most likely be there for me.  For now I'm doing Ok and in truth I try not to think about it too much and I try to enjoy life one day at a time.  I think I live in a state of semi-denial and it's working fine so far.  Riley is certainly keeping me fit these days, I can't do the hill walking so much now as my knees are suffering and I really don't want to undergo any elective surgery in the future but walking on the flat is just fine so that's what we do lots of.   I had a nutty friend who has MS and who tried some quack stem cell procedures.  She also had bee stings injected and there was something else about goat dung I think.  Anyway it was all so nuts that I decided friends like that I don't need lol

Comment by Linda and Murphy on March 3, 2012 at 2:14pm

Nicki, I am so sorry to hear you have MS.

 I know how hard it is to get into the clinical trials. My best friend has ALS but didn't qualify for the local trial.  I think the reason that restrictions are not so great  in that study is because they use your own stem cells, making it safer.

Comment by F, Calla & Luca on March 3, 2012 at 2:07pm

I didn't know you had MS either. There are so many disease which need more research. I hope your case is mild. Lots of hokum out there indeed! I know of a stem cell group in Colorado who are doing work on joints for cartilage and tendons. But the work is not covered by insurance and I'm still not sure how much is hokum or whether it's real. Some dog work has been done with knees too.

Comment by Jennifer and Jack on March 3, 2012 at 1:50pm

Nicky I didn't know you had MS. Sorry. I have only seen in a class room setting research that was being done on it. I will tell you that I have a friend that has MS and was in a clinical trial where she was put on high doses of statin drugs and she has not had an exacerbation since. I do not know where the clinical trial is taking place and honestly I don't know if she would had had an exacerbation without taking the drugs. I do know her personally and she really feel it helps. I will try to post the study if I can find it. I don't even know what would be in that type of drug to help with symptoms..Science is so facinating.

Comment by Nicky, Riley & Boris on March 3, 2012 at 1:32pm

I could do with some better research on MS while they are at it.  There is so much hokum on the subject, I tend not to read anything on it.  I'm generally a very inquisitive person but I choose only on a  'need to know' protocol when it comes to my own illness.  

Comment by Nicky, Riley & Boris on March 3, 2012 at 1:29pm

Next time Sophie goes for dinner I will get her to quiz him and find out what he is working on.  I know he comes to Ireland occasionally and I will definitely make sure to see him next time.

Comment by Linda and Murphy on March 3, 2012 at 1:25pm

TCA Cellular Therapy, LLC (TCA-CT)

This is a group in my area (New Orleans) that is working on stem cell research with ALS and with back injuries. They are using adult stem cells isolated from adipose tissue (fat). When I spoke with one of the members of the team, he said they can isolate enough stem cells from adults and they are easier to  work with than fetal cells. Yes, they can become any cell but The key is how to program them to become the cells you need.

As a researcher I would love to see some of the restrictions lifted and more funding for things outside of AIDS.

Comment by Jennifer and Jack on March 3, 2012 at 12:59pm

Oh I totally wish the government would ease up here on the tough regulations so we can get on with some cures! Nicky that is great. I would love to know what he is working on...but I am sure so would a lot of other people. I couldn't sleep last night and I started going through notes and research projects to try to refresh my brain.

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