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

September 2, 2005

Hi ,

My experience may not quite fit here, and I know others will write, but I thought I'd toss in a couple pennies anyway fwiw. )

I don't have my dx, who knows when or if I will, so I've no Neuro to consider for myself really. Though I did travel almost four hours for my first and follow-up Neuro visit and for my MRI. My Mother searched for a Neuro closer to us, when she moved up here, but her good Neuro remains about four hours from us. She's closer to him now. She was able to find PCPs who would work with her and that helped.

Anytime a move for us is mentioned, Alaska and Montana, I think straight away of the doctors. Who I'd find, would anyone provide a good work up, then dx, then ongoing care as needed. It's hard to know.

When we moved to our new home, it took us three and a half to four hours from the medical care we'd been receiving. This was for my sons. For their Neurobiological issues, we'd been at that for a while and I was leading care anyway. Still, you want someone experienced and competent. That wasn't terribly easy, but we're managing. I did call every medical provider in the area, near and far, though didn't get many responses. <g> Not thrilled with who we have, but this is one area it's *okay*. They're not who I'd prefer for evals at all.

For my older son, we've kept his team for his Brain Tumor care and they are three and a half to four hours away. Mostly, it's his Neurosurgeon we've dealt with and it's worked out well. When the tumor started growing again, we made the trip down and spent time in the area for surgery. We were making a trip down every six months for follow-up/checkup (MRI and doc visit), and are now at once a year. It isn't so bad. Not at all.

For my girls, my oldest especially, we made the same length of drive for their eye care. That is changing now though. It makes for a long trip, when you're leaving early in the morning, spending anywhere from 10 minutes to an hour at the doc's, then turning around and making the drive back. It was manageable though. I don't know if my car sick sufferer would agree. lol

If you kept your same medical team, would the trip be possible or would it be too frequent and with no where to stay overnight if you needed to? (Most of our trips are not overnight, but we have family in that general area should the stay be needed).

You might start calling medical professionals in the area you'll move to (when you know it), and talk to the nurses and/or doctors. Finding out their experience and what they would be agreeable to helping with. You might also find support groups in that area, as the people there would know of the good doctors to check into. You could also start with the lists of MS docs, then go through each, finding out who has experience with them and what that experience was (I know several on the list for Arizona are NOT good MS doctors, while others are great).

I hope you find the care you need.

Hugs,

Challis

Saw discussing moving to a remote area in the Adirondacks and wondered about getting good medical care when you move away. I am currently making a plan of major downsizing and moving to some unknown location near or far from my current medical care. Wondered how is handling this.

How do people handle transferring their care to a new doc. I want to have a doc following same protocol (IVIG monthly booster in infusion lab for example). Wondering what it would be like to have my neuro be say 4 hours away and making better use of a PCP for day to day care.

Thoughts on these issues; how to find good neuros that specialize in MS to transfer care, etc.

, clinically diagnosed 2005; avonex, IVIG in hospital 21 days this year plus monthly boosters, Novantrone Oct 05 planned; MS taking "rapid relapsing course" . I do not tolerate steroids or solumedrol due to severe steroid induced psychosis.; Moving to sharply downsize by Jan 06 as I switch from executive life to living on SSDI life and no company disability.......................

September 2, 2005

That's a good question . I moved to Alaska, to the Kenai Peninsula. My neuro in Arizona told me to be sure to get established with a neurologist right away in Alaska. I didn't. There was a neuro about an hour away but everyone I talked to said he was terrible. I did find a primary care doctor in a nearby town who I really liked and he was very knowledgeable about MS. I only saw him once while I was there so I don't know how willing he will be to follow any current treatment without wanting to make changes. I also met his partner when I went to the ER and really liked him. So I feel good about the doctors (his staff, however, sucks). I will be going back to Alaska in March so I guess I'll find out the answers to my questions eventually.

Ease of care is another issue. It is certainly something a person should seriously consider and decide based on their own health, wishes and needs. In Alaska we were 2 miles back in from a road over wetlands. In the beginning we had to either hike it or drive a 4 wheeler. I drove the 4 wheeler in but it was very hard on me and I didn't want to do that again. Eventually we got an ARGO (8 wheeled tracked vehicle). After we got the ARGO I could go to town but it still isn't easy. It takes a half hour to get out to where we park the truck and then the drive out to the main highway. After that it's still 20 minutes to the doctor or the hospital. I know if there was an emergency in the backwoods we may not make it to medical care in time. No one can come and help us quickly. Helicopters could land at some times of the year. When we go back to AK my brother and sister-in-law will be with

us. Both are nurses so help will be closer. Both are well versed in emergency aid and are first responders based on their backgrounds. My brother set up mobile hospitals for the Army and my sister-in-law is a certified first responder. (Right now, in fact, she is in Mississippi with the Red Cross.)

I guess my advice would be to have copies of all of your medical records and films. Then it's just a matter of shopping around for a doctor. Sometimes we are lucky the first time.

And I also know about downsizing...lol Your company doesn't have disability? That's terrible--I'm so sorry. I was very lucky that my employer did have disability and I have both the company disability and SSDI. I don't have insurance though except for Medicare. I couldn't afford to keep the insurance through my employer. Will you be able to keep your insurance?

You have 'rapid relapsing course' of MS? Has your doctor talked to you about Tysabri? Mine has. It's coming back on the market in about 5 months. My neuro thinks it's a good thing (as Martha would say). He said it can't be used in conjunction with Avonex--that's when the deaths occur ed before. When used on it's own he said the reduction of MS symptoms was near a cure rate. I've been doing some research on it. He said it's a once-a-month infusion that could probably be done at the hospital near me in AK. I'm seriously thinking about it. I trust my neuro and I know he wouldn't suggest it to me if it wasn't a good treatment.

Well THAT was a long email! I didn't' mean to write so much but when it comes to moving away from good neuro care I have a little experience! lol

Sharon

wrote:

Saw discussing moving to a remote area in the Adirondacks and wondered about getting good medical care when you move away. I am currently making a plan of major downsizing and moving to some unknown location near or far from my current medical care. Wondered how is handling this.

How do people handle transferring their care to a new doc. I want to have a doc following same protocol (IVIG monthly booster in infusion lab for example). Wondering what it would be like to have my neuro be say 4 hours away and making better use of a PCP for day to day care.

Thoughts on these issues; how to find good neuros that specialize in MS to transfer care, etc.

, clinically diagnosed 2005; avonex, IVIG in hospital 21 days this year plus monthly boosters, Novantrone Oct 05 planned; MS taking "rapid relapsing course" . I do not tolerate steroids or solumedrol due to severe steroid induced psychosis.; Moving to sharply downsize by Jan 06 as I switch from executive life to living on SSDI life and no company disability.......................

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__________________________________________________

September 2, 2005

Hi ,

I will be able to keep the same neuros and other docs as I have now. It is a bit farther to travel but I do love my docs. I told my neuro yesterday about the move and his biggest concern was getting care in a medical emergency. He has agreed to set up contacts with another practice right on the NY/Canadian border that may be a bit more convenient. Either way it would be a 1 1/2 to 2 hour trip by rail or and hour by boat. That is about the only thing that does concern me and maybe it will proved a downfall. For now though I am ready for this new adventure.

wrote:

Saw discussing moving to a remote area in the Adirondacks and wondered about getting good medical care when you move away. I am currently making a plan of major downsizing and moving to some unknown location near or far from my current medical care. Wondered how is handling this.

How do people handle transferring their care to a new doc. I want to have a doc following same protocol (IVIG monthly booster in infusion lab for example). Wondering what it would be like to have my neuro be say 4 hours away and making better use of a PCP for day to day care.

Thoughts on these issues; how to find good neuros that specialize in MS to transfer care, etc.

, clinically diagnosed 2005; avonex, IVIG in hospital 21 days this year plus monthly boosters, Novantrone Oct 05 planned; MS taking "rapid relapsing course" . I do not tolerate steroids or solumedrol due to severe steroid induced psychosis.; Moving to sharply downsize by Jan 06 as I switch from executive life to living on SSDI life and no company disability.......................

Start your day with Yahoo! - make it your home page

September 2, 2005

Well I wasn't talking about moving to Alaska (LOL) but I was talking about relocating far enough away that I may or may not be able to keep going to my current neuro (example in one town I'm considering; 4 hour drive to neuro). I have been to the Kenai in 1997 fishing in the summer and just loved it btw.

In answer to your questions, I had received SSDI based on "Demylinating Disease" effective Jan 04 for which I received no treatment. I somehow did not meet the full MS criteria which was most unfortunate and worsened. By Spring 05, I continued to get SSDI but went on brief work trial in an executive role. That failed as I worsened dramatically this summer. They have a pre-existing condition clause meaning I cannot file under their LTD.

My diagnosis did say RRMS. My hospital discharge papers now say rapid relapsing course as I continue to have new exacerbations every 30 days requiring hospitalization and mini-worsening within 2 weeks of IVIG treatment.

I had read re tysrabi coming back and made a note to discuss with my doc at next appt so thanks much for that. The good news is I do get maximum SSDI benefits due to my earnings but this is not enough to live on

And I also know about downsizing...lol Your company doesn't have disability? That's terrible--I'm so sorry. I was very lucky that my employer did have disability and I have both the company disability and SSDI. I don't have insurance though except for Medicare. I couldn't afford to keep the insurance through my employer. Will you be able to keep your insurance?

You have 'rapid relapsing course' of MS? Has your doctor talked to you about Tysabri? Mine has.

rest snipped

September 2, 2005

I am considering one town, Asheville, NC which is only a 4 hour easy drive on main hwy with local neuros and ERs. Would that be unreasonable and means no change in doc? Thanks for sharing .

From: MSersLife [mailto:MSersLife ] On Behalf Of jerry plowsSent: Friday, September 02, 2005 10:49 AMTo: MSersLife Subject: Re: moving away from good neuro care; how to handle

Hi ,

I will be able to keep the same neuros and other docs as I have now. It is a bit farther to travel but I do love my docs. I told my neuro yesterday about the move and his biggest concern was getting care in a medical emergency. He has agreed to set up contacts with another practice right on the NY/Canadian border that may be a bit more convenient. Either way it would be a 1 1/2 to 2 hour trip by rail or and hour by boat. That is about the only thing that does concern me and maybe it will proved a downfall. For now though I am ready for this new adventure.

September 2, 2005

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 -----

September 2, 2005

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__________________________________________________

September 2, 2005

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__________________________________________________

September 3, 2005

YES!!! Cheers! n

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

__________________________________________________

September 3, 2005

YES!!! Cheers! n

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

__________________________________________________

September 3, 2005

I was approved for SSDI retroactive to Jan 04. I am currently on cobra at $270 per month and I understand my Medicaid kicks in Feb 06

From: MSersLife [mailto:MSersLife ] On Behalf Of Sharon MarsdenSent: Saturday, September 03, 2005 12:45 AMTo: MSersLife Subject: RE: moving away from good neuro care; how to handle

Well I guess Alaska is going to the extreme... LOL

Are you on Medicare? Just curious. Thank goodness for SSDI, huh?

Sharon wrote:

Well I wasn't talking about moving to Alaska (LOL) but I was talking about relocating far enough away that I may or may not be able to keep going to my current neuro (example in one town I'm considering; 4 hour drive to neuro). I have been to the Kenai in 1997 fishing in the summer and just loved it btw.

In answer to your questions, I had received SSDI based on "Demylinating Disease" effective Jan 04 for which I received no treatment. I somehow did not meet the full MS criteria which was most unfortunate and worsened. By Spring 05, I continued to get SSDI but went on brief work trial in an executive role. That failed as I worsened dramatically this summer. They have a pre-existing condition clause meaning I cannot file under their LTD.

My diagnosis did say RRMS. My hospital discharge papers now say rapid relapsing course as I continue to have new exacerbations every 30 days requiring hospitalization and mini-worsening within 2 weeks of IVIG treatment.

I had read re tysrabi coming back and made a note to discuss with my doc at next appt so thanks much for that. The good news is I do get maximum SSDI benefits due to my earnings but this is not enough to live on

And I also know about downsizing...lol Your company doesn't have disability? That's terrible--I'm so sorry. I was very lucky that my employer did have disability and I have both the company disability and SSDI. I don't have insurance though except for Medicare. I couldn't afford to keep the insurance through my employer. Will you be able to keep your insurance?

You have 'rapid relapsing course' of MS? Has your doctor talked to you about Tysabri? Mine has.

rest snipped

September 3, 2005

I assume the key is finding a neuro willing and able to follow similar protocol as already arranged, correct? This is great information and opens up opps in towns I might not have considered before .

From: MSersLife [mailto:MSersLife ] On Behalf Of n RojasSent: Saturday, September 03, 2005 2:47 AMTo: MSersLife Subject: Re: moving away from good neuro care; how to handle

YES!!! Cheers! n

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.

September 3, 2005

I assume the key is finding a neuro willing and able to follow similar protocol as already arranged, correct? This is great information and opens up opps in towns I might not have considered before .

From: MSersLife [mailto:MSersLife ] On Behalf Of n RojasSent: Saturday, September 03, 2005 2:47 AMTo: MSersLife Subject: Re: moving away from good neuro care; how to handle

YES!!! Cheers! n

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.

September 3, 2005

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.

Sharonn Rojas wrote:

YES!!! Cheers! n

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

__________________________________________________

September 3, 2005

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.

Sharonn Rojas wrote:

YES!!! Cheers! n

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

__________________________________________________

September 3, 2005

It would be good if you could continue the cobra coverage but that probably won't happen. So it's your Medicare that starts in February then? I'm sure you know that 'Medicaid' is different and is the welfare health coverage for the poor. Medicare is what we get when we are retired on Social Security or disabled on Social Security Disability.

Hang in there!

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 wrote:

I was approved for SSDI retroactive to Jan 04. I am currently on cobra at $270 per month and I understand my Medicaid kicks in Feb 06

From: MSersLife [mailto:MSersLife ] On Behalf Of Sharon MarsdenSent: Saturday, September 03, 2005 12:45 AMTo: MSersLife Subject: RE: moving away from good neuro care; how to handle

Well I guess Alaska is going to the extreme... LOL

Are you on Medicare? Just curious. Thank goodness for SSDI, huh?

Sharon wrote:

Well I wasn't talking about moving to Alaska (LOL) but I was talking about relocating far enough away that I may or may not be able to keep going to my current neuro (example in one town I'm considering; 4 hour drive to neuro). I have been to the Kenai in 1997 fishing in the summer and just loved it btw.

In answer to your questions, I had received SSDI based on "Demylinating Disease" effective Jan 04 for which I received no treatment. I somehow did not meet the full MS criteria which was most unfortunate and worsened. By Spring 05, I continued to get SSDI but went on brief work trial in an executive role. That failed as I worsened dramatically this summer. They have a pre-existing condition clause meaning I cannot file under their LTD.

My diagnosis did say RRMS. My hospital discharge papers now say rapid relapsing course as I continue to have new exacerbations every 30 days requiring hospitalization and mini-worsening within 2 weeks of IVIG treatment.

I had read re tysrabi coming back and made a note to discuss with my doc at next appt so thanks much for that. The good news is I do get maximum SSDI benefits due to my earnings but this is not enough to live on

And I also know about downsizing...lol Your company doesn't have disability? That's terrible--I'm so sorry. I was very lucky that my employer did have disability and I have both the company disability and SSDI. I don't have insurance though except for Medicare. I couldn't afford to keep the insurance through my employer. Will you be able to keep your insurance?

You have 'rapid relapsing course' of MS? Has your doctor talked to you about Tysabri? Mine has.

rest snipped

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

Start your day with Yahoo! - make it your home page

September 3, 2005

It would be good if you could continue the cobra coverage but that probably won't happen. So it's your Medicare that starts in February then? I'm sure you know that 'Medicaid' is different and is the welfare health coverage for the poor. Medicare is what we get when we are retired on Social Security or disabled on Social Security Disability.

Hang in there!

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 wrote:

I was approved for SSDI retroactive to Jan 04. I am currently on cobra at $270 per month and I understand my Medicaid kicks in Feb 06

From: MSersLife [mailto:MSersLife ] On Behalf Of Sharon MarsdenSent: Saturday, September 03, 2005 12:45 AMTo: MSersLife Subject: RE: moving away from good neuro care; how to handle

Well I guess Alaska is going to the extreme... LOL

Are you on Medicare? Just curious. Thank goodness for SSDI, huh?

Sharon wrote:

Well I wasn't talking about moving to Alaska (LOL) but I was talking about relocating far enough away that I may or may not be able to keep going to my current neuro (example in one town I'm considering; 4 hour drive to neuro). I have been to the Kenai in 1997 fishing in the summer and just loved it btw.

In answer to your questions, I had received SSDI based on "Demylinating Disease" effective Jan 04 for which I received no treatment. I somehow did not meet the full MS criteria which was most unfortunate and worsened. By Spring 05, I continued to get SSDI but went on brief work trial in an executive role. That failed as I worsened dramatically this summer. They have a pre-existing condition clause meaning I cannot file under their LTD.

My diagnosis did say RRMS. My hospital discharge papers now say rapid relapsing course as I continue to have new exacerbations every 30 days requiring hospitalization and mini-worsening within 2 weeks of IVIG treatment.

I had read re tysrabi coming back and made a note to discuss with my doc at next appt so thanks much for that. The good news is I do get maximum SSDI benefits due to my earnings but this is not enough to live on

And I also know about downsizing...lol Your company doesn't have disability? That's terrible--I'm so sorry. I was very lucky that my employer did have disability and I have both the company disability and SSDI. I don't have insurance though except for Medicare. I couldn't afford to keep the insurance through my employer. Will you be able to keep your insurance?

You have 'rapid relapsing course' of MS? Has your doctor talked to you about Tysabri? Mine has.

rest snipped

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

Start your day with Yahoo! - make it your home page

September 3, 2005

This is something we all have to deal with--finding a good neuro who will treat us the way we want to be treated. It's not easy for some of us to find. I tried to find a good neuro closer to where I was living in Northern Arizona. I gave up and went back to my neuro in sdale. Ask around. Get ideas from MSers at local support groups. Email our group with the area you are considering and maybe someone here will have an opinion about local neuros. Then you will just have to try the doctor to see what you think. Are you wanting to keep your MS Specialist and find someone to work with him and coordinate your care? Then ask the various doctors about that and see what kind of response you get.

Good Luck!

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 wrote:

I assume the key is finding a neuro willing and able to follow similar protocol as already arranged, correct? This is great information and opens up opps in towns I might not have considered before .

From: MSersLife [mailto:MSersLife ] On Behalf Of n RojasSent: Saturday, September 03, 2005 2:47 AMTo: MSersLife Subject: Re: moving away from good neuro care; how to handle

YES!!! Cheers! n

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 (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

Start your day with Yahoo! - make it your home page

September 3, 2005

This is something we all have to deal with--finding a good neuro who will treat us the way we want to be treated. It's not easy for some of us to find. I tried to find a good neuro closer to where I was living in Northern Arizona. I gave up and went back to my neuro in sdale. Ask around. Get ideas from MSers at local support groups. Email our group with the area you are considering and maybe someone here will have an opinion about local neuros. Then you will just have to try the doctor to see what you think. Are you wanting to keep your MS Specialist and find someone to work with him and coordinate your care? Then ask the various doctors about that and see what kind of response you get.

Good Luck!

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 wrote:

I assume the key is finding a neuro willing and able to follow similar protocol as already arranged, correct? This is great information and opens up opps in towns I might not have considered before .

From: MSersLife [mailto:MSersLife ] On Behalf Of n RojasSent: Saturday, September 03, 2005 2:47 AMTo: MSersLife Subject: Re: moving away from good neuro care; how to handle

YES!!! Cheers! n

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 (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

Start your day with Yahoo! - make it your home page

September 3, 2005

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

September 3, 2005

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

September 3, 2005

Are you wanting to keep your MS Specialist and find someone to work with him and coordinate your care? Then ask the various doctors about that and see what kind of response you get.

Yes, I think this is EXACTLY what I want to have happen.................Thanks!!!!!, so I will make this part of the plan as I select a location, etc.

From: MSersLife [mailto:MSersLife ] On Behalf Of Sharon MarsdenSent: Saturday, September 03, 2005 9:57 AMTo: MSersLife Subject: RE: moving away from good neuro care; how to handle

This is something we all have to deal with--finding a good neuro who will treat us the way we want to be treated. It's not easy for some of us to find. I tried to find a good neuro closer to where I was living in Northern Arizona. I gave up and went back to my neuro in sdale. Ask around. Get ideas from MSers at local support groups. Email our group with the area you are considering and maybe someone here will have an opinion about local neuros. Then you will just have to try the doctor to see what you think. Are you wanting to keep your MS Specialist and find someone to work with him and coordinate your care? Then ask the various doctors about that and see what kind of response you get.

Good Luck!

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 wrote:

I assume the key is finding a neuro willing and able to follow similar protocol as already arranged, correct? This is great information and opens up opps in towns I might not have considered before .

From: MSersLife [mailto:MSersLife ] On Behalf Of n RojasSent: Saturday, September 03, 2005 2:47 AMTo: MSersLife Subject: Re: moving away from good neuro care; how to handle

YES!!! Cheers! n

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 (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

Start your day with Yahoo! - make it your home page

September 3, 2005

You've been to doctors in Arizona??? That's where I live. I have to tell you that my experience has been to be very wary of the doctors I've seen on the MS Society list or the Good Docs list. LOL.. I had one "ms specialist" in Phoenix tell me " MS is like a chonic backache--you just have to get used to it". That same doctor told a friend of mine to see a pychiatrist. This doctor is listed on the MS Society list and also on Good Docs. But then some really good neuros are on those lists too. It's hard, isn't it?

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 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

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

Start your day with Yahoo! - make it your home page

September 3, 2005

You've been to doctors in Arizona??? That's where I live. I have to tell you that my experience has been to be very wary of the doctors I've seen on the MS Society list or the Good Docs list. LOL.. I had one "ms specialist" in Phoenix tell me " MS is like a chonic backache--you just have to get used to it". That same doctor told a friend of mine to see a pychiatrist. This doctor is listed on the MS Society list and also on Good Docs. But then some really good neuros are on those lists too. It's hard, isn't it?

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 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

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

Start your day with Yahoo! - make it your home page

September 3, 2005

I was in Tucson and seen at UMC. Diagnosis Demylinating Disease NOS from 2002 to 2004 with no medical treatment for MS started until clinically definite diagnosis in May 05.

From: MSersLife [mailto:MSersLife ] On Behalf Of Sharon MarsdenSent: Saturday, September 03, 2005 10:14 AMTo: MSersLife Subject: RE: moving away from good neuro care; how to handle

You've been to doctors in Arizona???

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