Re: [MSersLife] Rapidly progressing, feel need to make big changes, what would you do?

[Guest guest]

,

When you got disabled enough (if you did),

did you sell your house. Not at first....15 yrs later.

move closer to family..........Yes

arrange for another family member to care for your child full time, ....Yes all the time, No 24 hr? No, not practical for us.

move in with family....No but moved nearby.

What mistakes did you make? .....refused to accept help when offered.

What do you wish you had done in making these decisions?.....Acted sooner.

How do you know if your illness will relapse enough and your changes would have not been necessary.....You don't know, but it is best to be prepared if possible...very important that you do not act is haste, do not panic, exacerbations will pass, think things out then decide.

What would you do? First and most importantly....step back allow the dust to settle. MS is usually very manageable...allowing you the time to think things out and make decisions objectively.

Go to www.copingandprevailing.com If you cannot afford to pay for the book or books send me your mailing address and I will send to you.

Regards,

Tom

[MSersLife] Rapidly progressing, feel need to make big changes, what would you do?

I was diagnosed in May with clinically definite RRMS after a long history of very obvious symptoms attributed to everything else. My latest medical report said rapidly relapsing MS with continued quick progression and a large new lesion load just since March, May, June, and then July MRIs. My day to day disability rating is between a 6-7 mostly using a rollator but exhausted within 20 min of doing jumping to a 8-8.5 for a week at a time during 3 hospitalizations now since June (where IVIG was part of course of treatment). I am on SSDI and will qualify for Medicare in Feb. I started an SSDI work trial in March but am on disability since July.I take avonex and monthly IVIG booster and doc will consider novantrone in 60 more days. I have a port a cat.

I have with a son with behavioral and ADD issues (age 4) who I can barely handle for more than 15 min at a time putting a tremendous strain on my husband and the father of my son who I remarried last year when I became more ill. Until recently, I was the business exec with 2 masters degrees and my husband was stay at home father. Now I can do neither. My son requires more caretaking it seems than 1 or 2 family members can do and I seem not to count due to my health problems. My blood family is in Los Angeles. I haven't lived there in 24 years except brief 4 day visits at a time. Mom wants me to move in with her, close to her, etc This scares me. I've been so independent at my life with great success. Who predicted I would be cut down in my exec earning years. Other friends point to their cities which have advantages in lower costs. Proximity to good medical care is important.

I have no idea where to start in brainstorming where to start or make decisions, don't feel well, and worry that decisions will be made FOR me if I have further disability in a quick period of time. My attacks that have been coming every few weeks involve huge loss of function in a matter of a day and last 2 weeks or more and much residual disability. What questions should I ask or support should I get in making such decisions about my future??

When you got disabled enough (if you did),

did you sell your house.

move closer to family

arrange for another family member to care for your child full time, all the time, 24 hr?

move in with family

What mistakes did you make?

What do you wish you had done in making these decisions?

How do you know if your illness will relapse enough and your changes would have not been necessary.

What would you do?

juliek

[Guest guest]

,

Have you started LDN? If so, how long have you been on it and what dosage etc.

Aletha

[MSersLife] Rapidly progressing, feel need to make big changes, what would you do?

I was diagnosed in May with clinically definite RRMS after a long history of very obvious symptoms attributed to everything else. My latest medical report said rapidly relapsing MS with continued quick progression and a large new lesion load just since March, May, June, and then July MRIs. My day to day disability rating is between a 6-7 mostly using a rollator but exhausted within 20 min of doing jumping to a 8-8.5 for a week at a time during 3 hospitalizations now since June (where IVIG was part of course of treatment). I am on SSDI and will qualify for Medicare in Feb. I started an SSDI work trial in March but am on disability since July.I take avonex and monthly IVIG booster and doc will consider novantrone in 60 more days. I have a port a cat.

I have with a son with behavioral and ADD issues (age 4) who I can barely handle for more than 15 min at a time putting a tremendous strain on my husband and the father of my son who I remarried last year when I became more ill. Until recently, I was the business exec with 2 masters degrees and my husband was stay at home father. Now I can do neither. My son requires more caretaking it seems than 1 or 2 family members can do and I seem not to count due to my health problems. My blood family is in Los Angeles. I haven't lived there in 24 years except brief 4 day visits at a time. Mom wants me to move in with her, close to her, etc This scares me. I've been so independent at my life with great success. Who predicted I would be cut down in my exec earning years. Other friends point to their cities which have advantages in lower costs. Proximity to good medical care is important.

I have no idea where to start in brainstorming where to start or make decisions, don't feel well, and worry that decisions will be made FOR me if I have further disability in a quick period of time. My attacks that have been coming every few weeks involve huge loss of function in a matter of a day and last 2 weeks or more and much residual disability. What questions should I ask or support should I get in making such decisions about my future??

When you got disabled enough (if you did),

did you sell your house.

move closer to family

arrange for another family member to care for your child full time, all the time, 24 hr?

move in with family

What mistakes did you make?

What do you wish you had done in making these decisions?

How do you know if your illness will relapse enough and your changes would have not been necessary.

What would you do?

juliek

[Guest guest]

> ,

>

> When you got disabled enough (if you did),

>

> did you sell your house. Not at first....15 yrs later.

> move closer to family..........Yes

> arrange for another family member to care for your child full time, ....Yes

all the time, No 24 hr? No, not practical for us.

> move in with family....No but moved nearby.

>

> What mistakes did you make? .....refused to accept help when offered.

> What do you wish you had done in making these decisions?.....Acted sooner.

> How do you know if your illness will relapse enough and your changes would

have not been necessary.....You don't know, but it is best to be prepared if

possible...very important that you do not act is haste, do not panic,

exacerbations will pass, think things out then decide.

> What would you do? First and most importantly....step back allow the dust to

settle. MS is usually very manageable...allowing you the time to think things

out and make decisions objectively.

>

> Go to www.copingandprevailing.com If you cannot afford to pay for the book or

books send me your mailing address and I will send to you.

> Regards,

> Tom

> [MSersLife] Rapidly progressing, feel need to make big changes,

what would you do?

>

>

> I was diagnosed in May with clinically definite RRMS after a long history of

very obvious symptoms attributed to everything else. My latest medical report

said rapidly relapsing MS with continued quick progression and a large new

lesion load just since March, May, June, and then July MRIs. My day to day

disability rating is between a 6-7 mostly using a rollator but exhausted within

20 min of doing jumping to a 8-8.5 for a week at a time during 3

hospitalizations now since June (where IVIG was part of course of treatment). I

am on SSDI and will qualify for Medicare in Feb. I started an SSDI work trial in

March but am on disability since July.I take avonex and monthly IVIG booster

and doc will consider novantrone in 60 more days. I have a port a cat.

>

> I have with a son with behavioral and ADD issues (age 4) who I can barely

handle for more than 15 min at a time putting a tremendous strain on my husband

and the father of my son who I remarried last year when I became more ill. Until

recently, I was the business exec with 2 masters degrees and my husband was stay

at home father. Now I can do neither. My son requires more caretaking it seems

than 1 or 2 family members can do and I seem not to count due to my health

problems. My blood family is in Los Angeles. I haven't lived there in 24 years

except brief 4 day visits at a time. Mom wants me to move in with her, close to

her, etc This scares me. I've been so independent at my life with great success.

Who predicted I would be cut down in my exec earning years. Other friends point

to their cities which have advantages in lower costs. Proximity to good medical

care is important.

>

> I have no idea where to start in brainstorming where to start or make

decisions, don't feel well, and worry that decisions will be made FOR me if I

have further disability in a quick period of time. My attacks that have been

coming every few weeks involve huge loss of function in a matter of a day and

last 2 weeks or more and much residual disability. What questions should I ask

or support should I get in making such decisions about my future??

>

> When you got disabled enough (if you did),

>

> did you sell your house.

> move closer to family

> arrange for another family member to care for your child full time, all the

time, 24 hr?

> move in with family

>

> What mistakes did you make?

> What do you wish you had done in making these decisions?

> How do you know if your illness will relapse enough and your changes would

have not been necessary.

> What would you do?

>

> juliek

>

===========

What would I do?

Knowing what LDN(Low Dose Naltrexone)~~NOT Novantrone(chemo) BUT

Naltrexone...can do, I'd find a doc willing to prescribe LDN and get on LDN and

order my LDN from one of the reputable compounding pharmacies on the LDN site as

soon as possible. Read the LDN site thoroughly and read the Further Q & A

section on the site also. I'd certainly try LDN for 6 to 9 months before EVER

considering Novantrone(chemotherapy). Make a deal with your neuro...let you try

LDN for 6 months and if you are not satisfied with LDN at that time, then

consider the Novantrone.

Not sure but your son's ADD might could be helped by LDN. He would probably

need a much smaller dose for his age and weight, maybe 1.0mg. I have also heard

they are removing tonsils and adnoids(sp?) and ADD seems to improve with their

removal.

Low Dose Naltrexone

http://www.low dose naltrexone.org