Posted: Mon Dec 20, 2004 9:19 pm
Observer,
But I am going to give you one example of a medication for SPMS that has worked relatively well for one patient...and that is my wife! In 1996, she had to quit her job in nursing because of SPMS. By 2000, the symptoms were numerous...horrible fatigue, tingling and burning in her feet, bad digestion problems and extremely sensitive to the heat. There was nothing any of the docs could offer her.
In June of 2000 she started to use Prokarin, the transdermal histamine diphosphate patch medication. The results were amazing and quick. Within a couple of days the fatigue was 80% reduced, the burning and tingling in the feet almost gone and the heat sensitivity greatly improved. The digestion problem took a few months to improve. As well, the cognitive problems she had as well virtually disappeared. She started to walk better as well. But then, in March of 2001 she took an awkward fall and broke her leg in 3 places!! After that she suffered from terrible spasms and to top it off, add in bilateral sciatica. Talk about a set back.
I've not mentioned Prokarin on this board very often but decided to with the talk of SPMS. It doesn't work for everyone...1/3 of the users get multiple symptom relief, 1/3 get one or two symptoms relieved and 1/3 have no change at all. Totally painless to use and virtually no side effects at all. Quite a story behind how the drug came to be used. If you want to read about how they think it works, go to www.edmsllc.com, click on "research" and then on either the "laymans" or "professional"
explanation.
Marg's health is still quite fragile but with the Prokarin she has been able to function, some days better than others. I hate to think of what she would be like without it.
Harry
Yes, that was quite a remarkable story with that little girl but I think what we had there was a unique kind of situation that was perhaps more of an aberration than the norm. What continues to amaze me is how someone that young ends up with a disease like MS!As for SPMS or PPMS, I don't know the mechanism of disease but I think back to the 5-yr old girl with an aggressive form of MS.
I don't know. Although there has been the odd exception with PPMS/SPMS , almost every medication has failed miserably and these patients just continue on their slide. Most comments that I have heard so far about Tysabri for this kind of MS is that it won't do much for it.All the CRABs and other inteventions had failed, yet Tysabri seemed to stop the MS cold in its tracks. Could/should this example provide any hope to SPMS or PPMS sufferers? Dunno.
But I am going to give you one example of a medication for SPMS that has worked relatively well for one patient...and that is my wife! In 1996, she had to quit her job in nursing because of SPMS. By 2000, the symptoms were numerous...horrible fatigue, tingling and burning in her feet, bad digestion problems and extremely sensitive to the heat. There was nothing any of the docs could offer her.
In June of 2000 she started to use Prokarin, the transdermal histamine diphosphate patch medication. The results were amazing and quick. Within a couple of days the fatigue was 80% reduced, the burning and tingling in the feet almost gone and the heat sensitivity greatly improved. The digestion problem took a few months to improve. As well, the cognitive problems she had as well virtually disappeared. She started to walk better as well. But then, in March of 2001 she took an awkward fall and broke her leg in 3 places!! After that she suffered from terrible spasms and to top it off, add in bilateral sciatica. Talk about a set back.
I've not mentioned Prokarin on this board very often but decided to with the talk of SPMS. It doesn't work for everyone...1/3 of the users get multiple symptom relief, 1/3 get one or two symptoms relieved and 1/3 have no change at all. Totally painless to use and virtually no side effects at all. Quite a story behind how the drug came to be used. If you want to read about how they think it works, go to www.edmsllc.com, click on "research" and then on either the "laymans" or "professional"
explanation.
Marg's health is still quite fragile but with the Prokarin she has been able to function, some days better than others. I hate to think of what she would be like without it.
Harry