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| | René Part21 May 17, 1998This is a letter from Dave Halkyard, if you subscribe to TIE or The Forum, you have already received it.
It's great information on Mitoxantrone and Immonogloblins! I've written Dave to ask for precise dosage and how often they are given.
His treatment is different as he doesn't use methylprednisolone (steroids), the TRUE treatment IS mitoxantrone and immonogloblins. Other studies have been mitoxantrone and steroids. They both work but I do think mitoxantrone and immonogloblin has a better impact.
I'll be looking into this with my doctor this coming Monday. It's my understanding that immonogloblins is an expensive drug and Medi-Cal won't approve payment. I'll also be looking into which pharmaceutical company makes it and see if they have a Patient Assistance Program to help pay for its use.
None the less, his email is very encouraging.
AND... EUREKA!!!... I FOUND A LIVE-IN!! Getting back to my routine of exercise, rest and laughter!! Subj: MITOXANTRONE / IMMUNOGLOBULIN Back from my Thrird treatment Date: 98-05-17 09:28:24 EDT From: m00zr900@mcmail.com (DAVE HALKYARD) Reply-to: m00zr900@mcmail.com
Hi All,
I have just returned from Athens, where I have been for my third treatment of Mitoxantrone/Immunoglobulin therapy from DR Kountouris.
This mail is just to tell you of my progress. My first treatment was back in October 1997 for six weeks. My second treatment was in January/February 1998 for two weeks. My third treatment was in April/May 1998 for two weeks.
My condition now is: 1. I have almost a normal walking gate, and no longer cast my left leg out to the side. 2. I can walk up the stairs normally one tread after the other, not very fast but much improved. 3. I can walk 500mtrs without the aid of a stick 4. I have more energy. 5. My hand is much better but not yet 100%, I can now hold a cup in my left hand and drink from it, before I could not. 6. My balance and co-ordination have improved. 7. I have No Spasticity.
After this third visit, Dr Kountouris has evaluated my progress as being an improvement of 2.5 using the Kurtzke scale. I can only judge by % and my best guess is that I have improved by 45%,probably an under estimation, but I would rather err on that side.
I AM DIAGNOSED WITH CHRONIC PROGRESSIVE MULTIPLE SCLEROSIS. Before this treatment last October I used walk with a stick in my right hand and cast my left leg out in a big "C" as I had a dropped foot and could not lift my left leg. I would walk up the stairs by dragging my left leg up onto the tread my right foot was on. My left arm was weak,as was my left leg. My left hand was claw like and I could not straighten my left arm. My co-ordination and balance were poor and I had problems with spasticity in my left leg. My walking distance was about 100yds with a stick and very poor gate,the 100yds was achieved by guts and strain and very tiring. I have had three visits to see Dr Kountouris in Athens and I am on the mend. It is slow and not a quick fix or cure, it is a treatment. I hope by Christmas to be close to 100% better, if I am only 80% then its going to take a little longer. One thing is for sure, it's working for me.
I made a video to record my level of disability before I went to Athens in October, did a video of myself on my first six week visit during my treatment and have taken a video this week after six months of treatment. So I have a benchmark and it's nice to be able to make this comparison.
I am going back to see Dr kountouris in Athens for further treatment in July 1998.
If anyone is interested in any further information about the treatment,or would like the contact number for DR Kountouris please send me a private email.
Gary Shane has kept in touch with me during this treatment and has made a trip to Dr Kountouris himself. I have to thank Gary for putting me in touch with DR Kountouris, THANKS A HEAP GARY. Rene is also having this treatment in the U.S.A. it would be nice to hear how she is doing.
I wish you all well Regards Dave'H. Back to: |
