Appt with MS Specialist

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Appt with MS Specialist

Postby ApVish » Tue Nov 01, 2011 3:30 am

So yday me and my DH met with a MS specialist and she finally confirmed the diagnosis of MS for my DH. Though he has not had a clinical onset yet (RIS for now), she convinced us to start copaxone (which took a solid 1 hour, and she was pretty open and honest about the odds). She was pretty patient with us and took the time to give her opinion about varied questions I threw at her including, LDN. CCSVI, HSCT etc. Spent two and half hrs with us and did several tests including optical tomography and several neuro examination.

Why I wanted to post this here is that ... She is a neuro who totally believes on HSCT and is heavily excited on the trial III results from Dr' Burt's chicago trial. and I was pretty excited to hear that. She was up to date on all Stem cell related trials including the one that just started in cleveland and even had a few other info on trials in canada and europe.

But, I am just hoping that her words come true in my DH's case, where in she was able to track down his first symptom to be the a very mild numbness on and off on his right toe 8 yrs back (which has not progressed yet). Since she said he has a pretty normal neuro examination and no relapse for 8 and odd yrs and if this continuos for another 2-3 yrs then may be he will just have a milder course and not need any HSCT procedure and we can probably tackle his course with just first line of treatments and may be the big guns including tysabri, gilenya or may be the BG12.

I am glad that we found a good MS neuro who is aware of HSCT trials and who supports them. 'Cause this has been our long term fallback plan since we heard about my DH's RIS diagnosis.
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Re: Appt with MS Specialist

Postby georgegoss » Tue Nov 01, 2011 10:31 am

Hi ApVish,

That's really great news that you have connected with a neurologist that has knowledge, understanding and best of all, support of "valid" stem cell related therapies. That is a rare find to see an open-minded neurologist like this. A real keeper.

I'm happy to hear that you have been able to achieve more clarity on the diagnosis. Sounds like you may be right (I hope) that the MS course will be fairly benign and not result in substantial impairment going forward. I'll keep my fingers crossed for both of you. Also, good move to start Copaxone (or any of the CRAB drugs) at this very early stage.

My best wishes for good health!

- George
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Re: Appt with MS Specialist

Postby KateCW » Tue Nov 01, 2011 2:27 pm

My neuro in NYC. Is very positive about stem cell stuff too. My neuro here in Calgary is open but not quite as positive as the fellow I see in NYC.

Can you tell me what trials in Canada she discussed? Dr. Freedmans work?
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Re: Appt with MS Specialist

Postby ApVish » Wed Nov 02, 2011 7:12 am

Thank you George,

I was absolutely thrilled with neuro, except the fact that she didn't buy into the LDN theory and from whatever I could say, she was not even aware of the details. But she was quick to disregard anythign related to that. it was a bummer because we wanted to try LDN along with copaxone.

Hi Kate,

yes, she was talking about freedman's work and explained the differences in his protocol vs Dr Burt's protocol and she had similar thoughts that George had expressed in this forum, which is after HSCT, people should have the mesenchymal cell theraphy which might help people in getting back the abilities that they had lost etc. But she was also cautious that she put gilenya, ty (or even BG 12 when it comes out) front in line before the HSCT.
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Re: Appt with MS Specialist

Postby KateCW » Wed Nov 02, 2011 8:03 am

Thanks for the reply. My neuro was aware of studies that LDN helped with quality of life so I am still on it. I have been taking LDN for 2 or 3 years, I can't recall, and I have continue to decline during that time. I still take it though, as it may be even worse without it! I think it has helped my immune system as I have not been plagued with the illnesses I used to get regularly. It was mt family oc that suggested it and prescribes it, not my neuro. Same with my compounded 4-AP, as Fampridine isn't approved in Canada yet.
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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