Re: neuro, progressive course; julie update

[Guest guest]

, there are no words adequate to be of much comfort. However,

I am so glad that you explained all this to us and to your mom. You

can count on me for meditation many times each day. I wish that I

lived next door so I could be more helpful, bring over a pie, anything.

You have all my admiration, all my hope--and now, back to meditation,

or as my father, who had MS, used to say: meditation, cogitation and

regurgitation (that is because I have cystic fibrosis as well as MS.

Love in great big bushel baskets,

n, all too familiar with going NUTS on Decadron!

neuro, progressive course; julie update

My mom returned home yesterday and had a good visit. I suspect my physical limitations were sobering, no scary to her. She saw me 1 year ago. I am no longer working and making some big financial decisions in the next coming months.

We saw my neuro before she left and the news continues to not be good with the Multiple Sclerosis continuing to take a progressive course. They will keep me on the interferon (avonex) for 3 more months, till Dec MRI, monthly IVIG booster, and hold off on adding chemo in form of novantrone . The MRIs in April, May, and July respectively showed many new lesions and increased T2 areas etc and were NOT good news. We will repeat the MRI in December. Protocol would be reconsidered if tysabri becomes available again.

I have severe steroid induced psychosis and so prednisone treatments are not an option for me whatsoever. I did a number of in hospital IVIG infusion stays over 5 days after I kept deteriorating between June and August. I have seen limited help with the IVIG where I seem to start into a remission that lasts a week even 10 days and bam, back down into progressive land. .

Meanwhile I do a host of complementary therapies ie. physical therapy, meditation, mindfullness meditation, yoga, stretching, rigid adherence to BBD/ allergies, supplements based on BBD recommendations although modified because i have extensive intolerances to various things.

, clinically diagnosed 2005; Using walker all the time now, Moving to sharply downsize by summer 06 as I switch from executive life to living on SSDI life and no company disability.......................because company fired me (right to work state) while on leave before diagnosis. Single mom with 4yo now due to ex who couldn't handle recent diagnosis

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[Guest guest]

, there are no words adequate to be of much comfort. However,

I am so glad that you explained all this to us and to your mom. You

can count on me for meditation many times each day. I wish that I

lived next door so I could be more helpful, bring over a pie, anything.

You have all my admiration, all my hope--and now, back to meditation,

or as my father, who had MS, used to say: meditation, cogitation and

regurgitation (that is because I have cystic fibrosis as well as MS.

Love in great big bushel baskets,

n, all too familiar with going NUTS on Decadron!

neuro, progressive course; julie update

My mom returned home yesterday and had a good visit. I suspect my physical limitations were sobering, no scary to her. She saw me 1 year ago. I am no longer working and making some big financial decisions in the next coming months.

We saw my neuro before she left and the news continues to not be good with the Multiple Sclerosis continuing to take a progressive course. They will keep me on the interferon (avonex) for 3 more months, till Dec MRI, monthly IVIG booster, and hold off on adding chemo in form of novantrone . The MRIs in April, May, and July respectively showed many new lesions and increased T2 areas etc and were NOT good news. We will repeat the MRI in December. Protocol would be reconsidered if tysabri becomes available again.

I have severe steroid induced psychosis and so prednisone treatments are not an option for me whatsoever. I did a number of in hospital IVIG infusion stays over 5 days after I kept deteriorating between June and August. I have seen limited help with the IVIG where I seem to start into a remission that lasts a week even 10 days and bam, back down into progressive land. .

Meanwhile I do a host of complementary therapies ie. physical therapy, meditation, mindfullness meditation, yoga, stretching, rigid adherence to BBD/ allergies, supplements based on BBD recommendations although modified because i have extensive intolerances to various things.

, clinically diagnosed 2005; Using walker all the time now, Moving to sharply downsize by summer 06 as I switch from executive life to living on SSDI life and no company disability.......................because company fired me (right to work state) while on leave before diagnosis. Single mom with 4yo now due to ex who couldn't handle recent diagnosis

No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.344 / Virus Database: 267.11.13/123 - Release Date: 10/6/2005

No virus found in this outgoing message.

Checked by AVG Anti-Virus.

Version: 7.0.344 / Virus Database: 267.11.13/123 - Release Date: 10/6/2005

[Guest guest]

Hi ,

Sorry to hear that you are progressing so rapidly. Have they

thought about plasma exchange?

Also, sorry to hear about your husband. I think he couldn't be more

of an asshole then to not see you through this.

Keep us updated.

Mindy

>

> My mom returned home yesterday and had a good visit. I suspect my

physical

> limitations were sobering, no scary to her. She saw me 1 year ago.

I am no

> longer working and making some big financial decisions in the next

coming

> months.

>

> We saw my neuro before she left and the news continues to not be

good with

> the Multiple Sclerosis continuing to take a progressive course.

They will

> keep me on the interferon (avonex) for 3 more months, till Dec

MRI, monthly

> IVIG booster, and hold off on adding chemo in form of

novantrone . The

> MRIs in April, May, and July respectively showed many new lesions

and

> increased T2 areas etc and were NOT good news. We will repeat the

MRI in

> December. Protocol would be reconsidered if tysabri becomes

available again.

>

>

> I have severe steroid induced psychosis and so prednisone

treatments are not

> an option for me whatsoever. I did a number of in hospital IVIG

infusion

> stays over 5 days after I kept deteriorating between June and

August. I

> have seen limited help with the IVIG where I seem to start into a

remission

> that lasts a week even 10 days and bam, back down into progressive

land. .

>

>

> Meanwhile I do a host of complementary therapies ie. physical

therapy,

> meditation, mindfullness meditation, yoga, stretching, rigid

adherence to

> BBD/ allergies, supplements based on BBD recommendations

although

> modified because i have extensive intolerances to various things.

>

> , clinically diagnosed 2005; Using walker all the time now,

Moving to

> sharply downsize by summer 06 as I switch from executive life to

living on

> SSDI life and no company disability.......................because

company

> fired me (right to work state) while on leave before diagnosis.

Single mom

> with 4yo now due to ex who couldn't handle recent diagnosis

>

[Guest guest]

Hi ,

Sorry to hear that you are progressing so rapidly. Have they

thought about plasma exchange?

Also, sorry to hear about your husband. I think he couldn't be more

of an asshole then to not see you through this.

Keep us updated.

Mindy

>

> My mom returned home yesterday and had a good visit. I suspect my

physical

> limitations were sobering, no scary to her. She saw me 1 year ago.

I am no

> longer working and making some big financial decisions in the next

coming

> months.

>

> We saw my neuro before she left and the news continues to not be

good with

> the Multiple Sclerosis continuing to take a progressive course.

They will

> keep me on the interferon (avonex) for 3 more months, till Dec

MRI, monthly

> IVIG booster, and hold off on adding chemo in form of

novantrone . The

> MRIs in April, May, and July respectively showed many new lesions

and

> increased T2 areas etc and were NOT good news. We will repeat the

MRI in

> December. Protocol would be reconsidered if tysabri becomes

available again.

>

>

> I have severe steroid induced psychosis and so prednisone

treatments are not

> an option for me whatsoever. I did a number of in hospital IVIG

infusion

> stays over 5 days after I kept deteriorating between June and

August. I

> have seen limited help with the IVIG where I seem to start into a

remission

> that lasts a week even 10 days and bam, back down into progressive

land. .

>

>

> Meanwhile I do a host of complementary therapies ie. physical

therapy,

> meditation, mindfullness meditation, yoga, stretching, rigid

adherence to

> BBD/ allergies, supplements based on BBD recommendations

although

> modified because i have extensive intolerances to various things.

>

> , clinically diagnosed 2005; Using walker all the time now,

Moving to

> sharply downsize by summer 06 as I switch from executive life to

living on

> SSDI life and no company disability.......................because

company

> fired me (right to work state) while on leave before diagnosis.

Single mom

> with 4yo now due to ex who couldn't handle recent diagnosis

>

[Guest guest]

plasma exchange was not discussed as an option although he spent

quite some time stating that he thought Tysabri would have been his

med of choice and to see if it comes back on the market.....I see

him again in 4 weeks and I will bring this up. He is continuing the

IVIG but I don't know how well it is working. Is plasma exchange

protocol less common in the US than in other countries?

> >

> > My mom returned home yesterday and had a good visit. I suspect

my

> physical

> > limitations were sobering, no scary to her. She saw me 1 year

ago.

> I am no

> > longer working and making some big financial decisions in the

next

> coming

> > months.

> >

> > We saw my neuro before she left and the news continues to not be

> good with

> > the Multiple Sclerosis continuing to take a progressive course.

> They will

> > keep me on the interferon (avonex) for 3 more months, till Dec

> MRI, monthly

> > IVIG booster, and hold off on adding chemo in form of

> novantrone . The

> > MRIs in April, May, and July respectively showed many new

lesions

> and

> > increased T2 areas etc and were NOT good news. We will repeat

the

> MRI in

> > December. Protocol would be reconsidered if tysabri becomes

> available again.

> >

> >

> > I have severe steroid induced psychosis and so prednisone

> treatments are not

> > an option for me whatsoever. I did a number of in hospital IVIG

> infusion

> > stays over 5 days after I kept deteriorating between June and

> August. I

> > have seen limited help with the IVIG where I seem to start into

a

> remission

> > that lasts a week even 10 days and bam, back down into

progressive

> land. .

> >

> >

> > Meanwhile I do a host of complementary therapies ie. physical

> therapy,

> > meditation, mindfullness meditation, yoga, stretching, rigid

> adherence to

> > BBD/ allergies, supplements based on BBD recommendations

> although

> > modified because i have extensive intolerances to various things.

> >

> > , clinically diagnosed 2005; Using walker all the time

now,

> Moving to

> > sharply downsize by summer 06 as I switch from executive life to

> living on

> > SSDI life and no company

disability.......................because

> company

> > fired me (right to work state) while on leave before diagnosis.

> Single mom

> > with 4yo now due to ex who couldn't handle recent diagnosis

> >

>

[Guest guest]

BIGHUG

Margot

>

> My mom returned home yesterday and had a good visit. I suspect my

physical

> limitations were sobering, no scary to her. She saw me 1 year ago.

I am no

> longer working and making some big financial decisions in the next

coming

> months.

>

> We saw my neuro before she left and the news continues to not be

good with

> the Multiple Sclerosis continuing to take a progressive course.

They will

> keep me on the interferon (avonex) for 3 more months, till Dec

MRI, monthly

> IVIG booster, and hold off on adding chemo in form of

novantrone . The

> MRIs in April, May, and July respectively showed many new lesions

and

> increased T2 areas etc and were NOT good news. We will repeat the

MRI in

> December. Protocol would be reconsidered if tysabri becomes

available again.

>

>

> I have severe steroid induced psychosis and so prednisone

treatments are not

> an option for me whatsoever. I did a number of in hospital IVIG

infusion

> stays over 5 days after I kept deteriorating between June and

August. I

> have seen limited help with the IVIG where I seem to start into a

remission

> that lasts a week even 10 days and bam, back down into progressive

land. .

>

>

> Meanwhile I do a host of complementary therapies ie. physical

therapy,

> meditation, mindfullness meditation, yoga, stretching, rigid

adherence to

> BBD/ allergies, supplements based on BBD recommendations

although

> modified because i have extensive intolerances to various things.

>

> , clinically diagnosed 2005; Using walker all the time now,

Moving to

> sharply downsize by summer 06 as I switch from executive life to

living on

> SSDI life and no company disability.......................because

company

> fired me (right to work state) while on leave before diagnosis.

Single mom

> with 4yo now due to ex who couldn't handle recent diagnosis

>