This Is MS Multiple Sclerosis Community: Knowledge & Support

There was a post about "hustlers - medical tourism" a few days ago which I thought was a bit myopic and unfair. I expressed my thoughts in that post, but I wanted to clarify a few things further.

I contacted Ms. Sayeed because I had considered the India option even before I discovered this forum. I knew that it would be like herding cats to get any prompt remedy in Canada, and I knew that there were options.

Some expressed that they thought that $18,000 CDN for a round-trip to India, with all the whistles and bells, to get one's life back, was outrageous. I think it's cheap.

I have lost hundreds of thousands of dollars (if not millions) in income to this illness. If I was healthy again, I could make scads of money.

Ms. Sayeed is providing a service to those who feel they have no other options. And what are our options? In Canada, we can hope that they get all of the research done in the next year? 2 years? 5 years? 10 years? What will your level of disability be by then? We could cough up $80,000 to go to Stanford, except they are out of the question for the time being. We can go to Poland and pay $5,500 + $300 for MRV +$75 for Doppler + $3,000+ for airfare = $8875 + hotel, taxi, food, etc., but since Dr. Simka is effectively the only one in the world doing it right now, and there are millions of us with MS in the world, what are your chances of getting any relief any time soon? I prefer to take charge of my own life, and not rot away in quiet desperation.

Ms. Sayeed is not a "travel agent", as she was so uncharitably described. She is well educated, and is providing a service. Is she going to make some money? Of course! Why shouldn't she? That is her job. There was no expressed outrage at Stanford making $80Gs for a few hours of surgery, and some follow-up (is that part of the $80Gs?). So what of those who are uninsured? Do they just rot in quiet desperation too? Maybe they can squeak together $18,000. Ms. Sayeed is a consultant. Consultants charge fees. When I was in business, I used to charge cost + 40% (on the wages that I paid too, plus, sometimes astronomical mark-ups on materials, like $26 for a quart of milk). I was never accused of gouging. Everyone was happy.

People think little of paying $40,000 for a car, or a half-million for a house (which they pay a real estate agent 7% to help them buy - $35,000), but think that $18,000 to get their life back is a gouge. I just can't follow that logic, try as I might.

I am not boosting for Ms. Sayeed, and will receive no monetary consideration from her, but I felt that it was unfair, the way in which she was characterized, and I can't bear to see injustice.

I spoke with her on the phone at length today, and asked her many questions. This post is already pretty long, so I will leave it with her response (below) to some of my queries.

The clinic that she speaks of, where 4 scans were done today, is the False Creek Surgical Centre in Vancouver. They are charging $499 for the Doppler, $2,070 for the MRV, or $2300 for both. Hopefully, we will hear from those who paid for those scans as to what was, or wasn't found. Ms. Sayeed will be speaking to the doctor tomorrow, and will let me know. I, of course, will let you know.

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My name is not really Johnson. MSed up since 1993

I agree with you Johnson!

And I have seen at least one of the Indian Hospitals mentioned on Ms Sayeed's website (The Indhraprasta Apollo in New Delhi). A friend needed treatment there, and the facilities were top notch. Frankly better than most UK hospitals!

I will be keeping an eye on India as a place of treatment, potentially atleast!

Cheers

Camilla

In due time, India may be a place to get tested for CCSVI and possibly angioplasty or a Veinous stent. What concerns me, after reading Dr. Zamboni's papers and notes about CCSVI is the training required to read CCSVI. If the lady really wants to help MS'ers on the CCSVI, just tell us what Doctor and Hospitals in India are trained by Dr. Zamboni.

mohzi - Dr. Zamboni's protocol for screening (Doppler/MRV) is the tricky part. To the best of my understanding, Dr. Z. did not train Dr.s Dake or Simka to do stenting, as Dr. Zamboni has never stented a CCSVI patient, and seems to think that it is better to wait for dedicated stents to come on line in 2010.

False Creek Surgical in Vancouver is doing the scans according to Dr. Z's protocol. It is, as of yet, unknown to me whether they are picking up the stenosis (ie: doing it properly). A lot of people cannot even get their doctors to requisition screening, and this lady is assisting with that. She is not sending anyone anywhere for surgery yet, as she is trying to make arrangements in not only India, but Germany as well.

Again, It is the scans that are tricky to interpret. Angioplasty can be done by any vascular surgeon, interventional radiologist, etc. Dr. Zamboni has not trained anyone to stent, because he does not stent (for CCSVI) at this point.

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My name is not really Johnson. MSed up since 1993