Re: [SPAM]Re: [SPAM]Re: newly diagnosed and lots of questions/concerns

[Guest guest]

thank you that helped a lot. I don't have it any more but it was mentioned several time in my medical records.

Jackie

[sPAM]Re: newly diagnosed and lots of questions/concerns

Welcome to the family, we all wish we could meet at the grocery store doing normal stuff- but since we have NS-- well, at least this is a good place to learn how to handle the challenges..

You asked what's ahead?

The best answer I can give you is that NS generally doesn't kill us-- at least not very fast. Many of us have been dealing with it for years, and if we get a combination of immunosupressants that work for us, we generally can slow the progression-- and that is a good thing.

I'm glad they've added Plaquenil to your regime. It does seem to help many of us with the "brain fog" issues, as well as the body pain.

The prednisone at this point is generally useless-- the side effects out weigh the benefits. Between the weight gain, the blood sugar issues, the mood swings, the boneloss-- it just seems to mask the symptoms more than suppress them.

What I've learned to tell my doctors when I describe the fatigue is that if they imagine the very worst case of pneumonia they've ever had-- and the exhaustion and fatigue of recovering from it; they can magnify that level of fatigue 5 times over, and it'd still be a step up. A huge step up.

Many of us have had to give up out jobs-- and if you can no longer work, file for your SSDI. Get friends to write a letter on your behalf explaining the changes they see happening. Keep good track of what you have changed and how you've adapted- put down what you can no longer do--- and focus on those issues.

(For SSDI purposes, don't focus on them for your daily life-- it'd drive you nuts.)

If you find you're having short term memory problems, put it down. If you can't walk without a cane, or are wheelchair confined-- put it down. Since you're having vision issues-- put it down. GET INTO THE OPHTHALMOLOGIST (MD) AND GET THAT ISSUE ADDRESSED!!!!

You will find that you have to pace yourself. Somedays when you get up and get your shower- then need that 3 hr nap-- that is okay. It happens. To all of us. I know how hard it is when the kids are young enough to need you to get them to and from their games and such-- but if you don't listen to your body-- it will force the issue on you.

You'll find so many posts on these issues and more in our ARCHIVES. We've also put together a huge LINK library where you can print out articles to share with your MD's. The address is at the bottom of this and every email that goes out thru the group.

Personally I swear by MSM powder for the "inside" the bone pains, and preach hydration and low sugar consumption for the neuropathy. It works!

i KNOW YOU'LL have so many questions and concerns, and that's what we do here. We hold hearts and hands and become family.

Sincerely,

Tracie

NS Co-owner/moderator

In a message dated 3/9/2008 4:02:01 P.M. Pacific Daylight Time, csamom3 (AT) yahoo (DOT) com writes:

Any advice, suggestions, ideas of what's ahead? How to deal with the changes (I gained 40# with prednisone over the last year and before now I was never over weight), I have always been strong/leader/independent type person. Now can do very little of what I used to do. It sure would help to talk to someone who understands. My husband is very supportive. This is very hard on him and my 3 sons

It's Tax Time! Get tips, forms and advice on AOL Money Finance.

No virus found in this incoming message.Checked by AVG. Version: 7.5.518 / Virus Database: 269.21.7/1319 - Release Date: 3/8/2008 10:14 AM

[Guest guest]

thank you that helped a lot. I don't have it any more but it was mentioned several time in my medical records.

Jackie

[sPAM]Re: newly diagnosed and lots of questions/concerns

Welcome to the family, we all wish we could meet at the grocery store doing normal stuff- but since we have NS-- well, at least this is a good place to learn how to handle the challenges..

You asked what's ahead?

The best answer I can give you is that NS generally doesn't kill us-- at least not very fast. Many of us have been dealing with it for years, and if we get a combination of immunosupressants that work for us, we generally can slow the progression-- and that is a good thing.

I'm glad they've added Plaquenil to your regime. It does seem to help many of us with the "brain fog" issues, as well as the body pain.

The prednisone at this point is generally useless-- the side effects out weigh the benefits. Between the weight gain, the blood sugar issues, the mood swings, the boneloss-- it just seems to mask the symptoms more than suppress them.

What I've learned to tell my doctors when I describe the fatigue is that if they imagine the very worst case of pneumonia they've ever had-- and the exhaustion and fatigue of recovering from it; they can magnify that level of fatigue 5 times over, and it'd still be a step up. A huge step up.

Many of us have had to give up out jobs-- and if you can no longer work, file for your SSDI. Get friends to write a letter on your behalf explaining the changes they see happening. Keep good track of what you have changed and how you've adapted- put down what you can no longer do--- and focus on those issues.

(For SSDI purposes, don't focus on them for your daily life-- it'd drive you nuts.)

If you find you're having short term memory problems, put it down. If you can't walk without a cane, or are wheelchair confined-- put it down. Since you're having vision issues-- put it down. GET INTO THE OPHTHALMOLOGIST (MD) AND GET THAT ISSUE ADDRESSED!!!!

You will find that you have to pace yourself. Somedays when you get up and get your shower- then need that 3 hr nap-- that is okay. It happens. To all of us. I know how hard it is when the kids are young enough to need you to get them to and from their games and such-- but if you don't listen to your body-- it will force the issue on you.

You'll find so many posts on these issues and more in our ARCHIVES. We've also put together a huge LINK library where you can print out articles to share with your MD's. The address is at the bottom of this and every email that goes out thru the group.

Personally I swear by MSM powder for the "inside" the bone pains, and preach hydration and low sugar consumption for the neuropathy. It works!

i KNOW YOU'LL have so many questions and concerns, and that's what we do here. We hold hearts and hands and become family.

Sincerely,

Tracie

NS Co-owner/moderator

In a message dated 3/9/2008 4:02:01 P.M. Pacific Daylight Time, csamom3 (AT) yahoo (DOT) com writes:

Any advice, suggestions, ideas of what's ahead? How to deal with the changes (I gained 40# with prednisone over the last year and before now I was never over weight), I have always been strong/leader/independent type person. Now can do very little of what I used to do. It sure would help to talk to someone who understands. My husband is very supportive. This is very hard on him and my 3 sons

It's Tax Time! Get tips, forms and advice on AOL Money Finance.

No virus found in this incoming message.Checked by AVG. Version: 7.5.518 / Virus Database: 269.21.7/1319 - Release Date: 3/8/2008 10:14 AM