This Is MS Multiple Sclerosis Knowledge & Support Community

Vivianne766 wrote:

TFau wrote:Sorry to interrupt this conversation, but I was wondering if anyone knows where the waiting list is for Dr. Siskin - for example, are they now calling people who made their first call in early May?

I think people`who made the first call in the 3rd week of May have a date by now. ( I hope ! )

It's starting to seem that way, Viv. My darling man is scheduled for September 14. He made his first call on May 18 but didn't hear anything back so he called again on May 24. He got the information call back on May 26. He got the call this past Monday with his appointment date. He has his plane and hotel reservations so, all of a sudden, it's becoming very real.

I'm praying for everyone still waiting.

Your darling man is lucky to have you, Trish!!!

BooBear wrote:Your darling man is lucky to have you, Trish!!!

Thanks, BB. I think he usually thinks so but yesterday he told me not to smother him. First of all, we're currently long distance so I didn't know that I might have been doing that. Then I looked at things from his perspective and understood how he might think that.

Today he told me I'm fine and he was having an unusual day yesterday. He read an article in Discover magazine about endogenous retroviruses being agents that cause MS. Apparently, it caused him to question CCSVI and the vascular connection.

Oy, it might be a long month and a half until September 14.

Cece,
Please please please take his name off of your published list (edit your post or whatever needs to be done).

Thank you so much!

Trish317 wrote:

BooBear wrote:Your darling man is lucky to have you, Trish!!!

Thanks, BB. I think he usually thinks so but yesterday he told me not to smother him. First of all, we're currently long distance so I didn't know that I might have been doing that. Then I looked at things from his perspective and understood how he might think that.

Today he told me I'm fine and he was having an unusual day yesterday. He read an article in Discover magazine about endogenous retroviruses being agents that cause MS. Apparently, it caused him to question CCSVI and the vascular connection.

Oy, it might be a long month and a half until September 14.

The infection theory for MS is an old one; that's why some have tried interferon (spelling?) pharma....very, very expensive. I have never heard of anyone being cured of this "infection" which has never been identified. Must be quite an elusive bug to responsible for 400,000+ cases of MS just in the USA and still not proven to exist.

Personally, I'll just stay with CCSVI.

Donnchadh

suzq77 wrote:Cece,
Please please please take his name off of your published list (edit your post or whatever needs to be done).

Thank you so much!

Already edited.

Trish317 wrote:He has his plane and hotel reservations so, all of a sudden, it's becoming very real.

Hopefully nonrefundable. We've heard too much about this darling man for him to get cold feet.

Actually I decreased my thyroid meds and helped my heat intolerance after treating infections for 9 mos. I know of many people who recovered from an MS dx with antimicrobials.

I personally believe there is an infectious cause to some stenoses. If I am correct, it will probably take 100 more years for this connection to be made.

This is a time of discovery and I believe everything needs to be looked at thru the lens of the vascular anomalies.

Just my HO here.

Thank you, Cece!

Donnchadh wrote:

Trish317 wrote:

BooBear wrote:Your darling man is lucky to have you, Trish!!!

Thanks, BB. I think he usually thinks so but yesterday he told me not to smother him. First of all, we're currently long distance so I didn't know that I might have been doing that. Then I looked at things from his perspective and understood how he might think that.

Today he told me I'm fine and he was having an unusual day yesterday. He read an article in Discover magazine about endogenous retroviruses being agents that cause MS. Apparently, it caused him to question CCSVI and the vascular connection.

Oy, it might be a long month and a half until September 14.

The infection theory for MS is an old one; that's why some have tried interferon (spelling?) pharma....very, very expensive. I have never heard of anyone being cured of this "infection" which has never been identified. Must be quite an elusive bug to responsible for 400,000+ cases of MS just in the USA and still not proven to exist.

Personally, I'll just stay with CCSVI.

Donnchadh

I reminded him that CCSVI is a proven fact and that, whether it's the cause or effect of MS, blocked veins and iron deposits in the brain are NOT a good thing and need to be corrected.

Cece wrote:

suzq77 wrote:Cece,
Please please please take his name off of your published list (edit your post or whatever needs to be done).

Thank you so much!

Already edited.

Trish317 wrote:He has his plane and hotel reservations so, all of a sudden, it's becoming very real.

Hopefully nonrefundable. We've heard too much about this darling man for him to get cold feet.

I don't think that will happen. I don't know what I'd do if it did.

Does anybody know of a Dr. in Minnesota willing to test or treat CCSVI? It's hard for me to travel but I do have my name on 2 lists. I haven't had good luck with finding one local. I came close with consultations twice only to be told they wouldn't pursue it after going in. So frustrating.

Cece wrote:

suzq77 wrote:Yes. 100%.

Denise Manley took the list down from fb but I don't know who posted it here.

*innocent whistling*

I'd been looking for that list and thinking I was crazy because I couldn't find it.

Do you know if a doctor from Idaho was on that list, or is there anyway to find out if a doctor in Idaho is doing the procedure? I have family there (if it's at all near Boise or Nampa) and it would be a definite possibility for me if they're not too expensive.

Thank you,

Linda

P.S. I can understand why people are worried about doctors being shut down, but this is very frustrating to me - yesterday was a horrible day, I had no time to write that doctor's name down and now it's gone forever. The west coast has become further from reach for me, and seeing an Idaho doctor's name gave me hope again, then it was snatched away due to paranoia - I suppose rightfully so to protect doctors, but what about patients who have no way of finding doctors in an area they can afford? We're left flailing in the dark and I'm sorry but that's outrageous.

Check with Denise Manley, selkie...it was her list and she would know if the ID doc was one of the ones who didn't want his name given out.

Cece wrote:Check with Denise Manley, selkie...it was her list and she would know if the ID doc was one of the ones who didn't want his name given out.

Sorry, I can't speak to her. I'd rather not go into why. More a difference of opinion on how this information should be shared than anything personal. I'm sure she's a fine person. I need someone else to give the Idaho doctor's name, or I'll just have to seek help elsewhere.

selkie - I sent you a PM. I wish you only the best.