Re: moving away from good neuro care; how to handle

[Guest guest]

Yes indeed, save for the first one who diagnosed me accurately, I would say that MS experts are as close to quacks as the medical

profession allows them to be. A good neurologist is a blessing, and

can change one's life in meaningful ways, and that is most likely,

NOT going to be an alleged "MS expert" nor a GROUP that touts its

self as such--O.K., Gamg, stone me! Love, to all, n, who is so

greatful that that last visual blurrrrrrr was a smurch on my monitor

screen, and not in the back of my eye!

RE: moving away from good neuro care; how to handle

Any neuro could treat you and doesn't have to be a MS doc. I haven't been impressed with the docs I have seen who are called "MS Specialists". (my opinion..)

You could go to any hospital for your IV treatments. It would just have to be set up with them. It shouldn't be a problem at all.

Let us know what you decide.

Sharon wrote:

http://www.nationalmssociety.org/treatment_clinic.asp?

allows you to search by state. I did not find any similar listings on the MSAA site however.

What I did find there was info on affordable housing for MS patients (have to check if accept a child too so left message) and I have already ordered a group of items such as a cooling vest through MSAA with a pending order. They are great but I didn't see a list of MS doctors.

Could a non-MS neuro treat me and follow the MS protocol? Couldn't I get IVIG booster at a local hospital or infusion lab? Those are questions that I will have to research and figure out.

I was also made aware of some affordable housing that is opening up local near me. I just again have to decide if I want to do the apartment thing.

Superdownsizing is SO hard.

From: MSersLife [mailto:MSersLife ] On Behalf Of n RojasSent: Friday, September 02, 2005 5:14 PMTo: MSersLife Subject: Re: moving away from good neuro care; how to handle

http://www.nmss.org/ -- National Multiple Sclerosis Society

http://www.msaa.com/ - Multiple Sclerosis Association of USA

, I do wish I had an easier answer, but I do think that both

the MS society and the MS Association might be helpful. Here

are the websites. Love, n

----- Original Message -----

Sharon (MSersLife creator/owner)

“One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge

__________________________________________________

[Guest guest]

Yes indeed, save for the first one who diagnosed me accurately, I would say that MS experts are as close to quacks as the medical

profession allows them to be. A good neurologist is a blessing, and

can change one's life in meaningful ways, and that is most likely,

NOT going to be an alleged "MS expert" nor a GROUP that touts its

self as such--O.K., Gamg, stone me! Love, to all, n, who is so

greatful that that last visual blurrrrrrr was a smurch on my monitor

screen, and not in the back of my eye!

RE: moving away from good neuro care; how to handle

Any neuro could treat you and doesn't have to be a MS doc. I haven't been impressed with the docs I have seen who are called "MS Specialists". (my opinion..)

You could go to any hospital for your IV treatments. It would just have to be set up with them. It shouldn't be a problem at all.

Let us know what you decide.

Sharon wrote:

http://www.nationalmssociety.org/treatment_clinic.asp?

allows you to search by state. I did not find any similar listings on the MSAA site however.

What I did find there was info on affordable housing for MS patients (have to check if accept a child too so left message) and I have already ordered a group of items such as a cooling vest through MSAA with a pending order. They are great but I didn't see a list of MS doctors.

Could a non-MS neuro treat me and follow the MS protocol? Couldn't I get IVIG booster at a local hospital or infusion lab? Those are questions that I will have to research and figure out.

I was also made aware of some affordable housing that is opening up local near me. I just again have to decide if I want to do the apartment thing.

Superdownsizing is SO hard.

From: MSersLife [mailto:MSersLife ] On Behalf Of n RojasSent: Friday, September 02, 2005 5:14 PMTo: MSersLife Subject: Re: moving away from good neuro care; how to handle

http://www.nmss.org/ -- National Multiple Sclerosis Society

http://www.msaa.com/ - Multiple Sclerosis Association of USA

, I do wish I had an easier answer, but I do think that both

the MS society and the MS Association might be helpful. Here

are the websites. Love, n

----- Original Message -----

Sharon (MSersLife creator/owner)

“One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge

__________________________________________________

[Guest guest]

I agree! I've seen one "MS Specialist". MmmmNo.

Challis

Any neuro could treat you and doesn't have to be a MS doc. I haven't been impressed with the docs I have seen who are called "MS Specialists". (my opinion..)

You could go to any hospital for your IV treatments. It would just have to be set up with them. It shouldn't be a problem at all.

Let us know what you decide.

Sharon wrote:

http://www.nationalmssociety.org/treatment_clinic.asp?

allows you to search by state. I did not find any similar listings on the MSAA site however.

What I did find there was info on affordable housing for MS patients (have to check if accept a child too so left message) and I have already ordered a group of items such as a cooling vest through MSAA with a pending order. They are great but I didn't see a list of MS doctors.

Could a non-MS neuro treat me and follow the MS protocol? Couldn't I get IVIG booster at a local hospital or infusion lab? Those are questions that I will have to research and figure out.

I was also made aware of some affordable housing that is opening up local near me. I just again have to decide if I want to do the apartment thing.

Superdownsizing is SO hard.

[Guest guest]

I have, since December, seen 4 neuros and 1 MS specialist. I liked one and a half of the neuros, the half because the one man seemed very very good and thorough and answered my questions very well but when I left the room to leave I heard him talking to the nurse about the fat woman in room 4 who wouldn't shut up (that was me) The other two were demeaning, unprofessional, and totally disinterested. The MS specialist was good in some ways and iffy in others. I think its trial and error with drs, its hard to find one that meshes with your own personality and has beliefs and ideas that coincide with your own as well. Its fine and dandy to have a doctor that is world renown for his research, has written hundreds of essays, and sees thousands of patients a year with success but if he does not have a personality, bedside manner, or demeanor that works with yours, it is not going to be a good patient/doctor relationship and no matter how good he is, you are not going to see that side

of him. Yes I did get a bit off the topic here didn't I?

wrote:

and some pretty awful neuros too who pat you on the head and send you off for psych care or back to PCP for years more of needless not being diagnosed.......

I've been to 4 of the MS docs that appear on the MS society list in two different states (AZ and NC) and two were aggressive; one was good but took 2 years needlessly I now think to diagnose and one at UNC that was positively awful, patronizing, and a really bad experience!

LOL

From: MSersLife [mailto:MSersLife ] On Behalf Of Sharon MarsdenSent: Saturday, September 03, 2005 9:40 AMTo: MSersLife Subject: Re: moving away from good neuro care; how to handle

So you agree with me, n, regarding the quality of some so-called MS Experts???? lol

Some people are very happy with their own 'ms specialist/expert' but I've never had that experience. I have, however, found some fantastic neuros.

Sharon __________________________________________________