Re: question for a friend

December 27, 2005

>

> i have a friend from the local MS group who has primary progressive MS

> and Lyme disease. she has new Symptoms everyday, despite starting LDN

> a few months ago. she is in a wheelchair, has no bowel function and

> limited sight. she is such a strong person and has accepted her

> deterieration as the inevitable. i remember some talks on lyme and MS

> in previous digests. i save them all but i have to go through over 300

> digests to look back.

>

> i really want to give her some hope. is there something crucial that i

> am forgetting that might make a difference in her life? all answers

> would be appreciated. we see the same neuro which accounts for some of

> the progression (lol) thanks all,

>

> joanna

>

===========

She most likely needs to get her Lyme treated first. In some instances LDN has

made Lyme symptoms worse.

May 15, 2007

-Hi Jeannie she needs a CAT SCAN done with the dye injection. Thats

the only way she can have a decent test done. I know cause I had a

stimulator too and couldn't have an MRI, so that is the only good

test they could do on me to find out what was wrong. Just tell her to

make she a good dr does it cause it can be painful if not done right.

Also tell her to ask her dr to give her some valium to relax before

the test and she will breeze thru it I slept thru part of mine I

was so relaxed and tired from not sleeping much for days before it.

Also have you checked on the links there is one for pain drs in all

the states, there might be one there for her to check and see if they

will help. How scary that must be not to be able to get the meds you

need for pain. Thats one thing I fear the most about moving is

leaving my PM Dr's cause they have done so much for me. And I ALWAYS

know I can get help there. Can be sure when we finally figure out

where we will be going thats one of the first things I am going to

start doing, calling drs and looking for a good one even before I

move a thing. I hope this helps if I remember what it is called I

will add it later, but my brain is not letting me get that info right

now. Grrrrrrrrrrrr drives me NUTS!!!!!!!!!!!! best wishes to your

friend. Sharon Group Owner

p.s. has she tried having them reset the stimulator?? she should be

able to have her dr contact the people who set it orginally and they

might be able to change the settings on it for her, it might help her

out. But I know that is why I had mine removed too, it just wasn't

helping much anymore.

-- In neck pain , " jeannieboo1 "

<jeannieboo1@...> wrote:

>

> Hi

> I have a friend who lives in Oregon, she has a hard time getting

pain

> meds., because evidently that state has a lot of problems with

people

> over-abusing drugs, and the drs. are overly cautious about giving

> people have been diagnosed with several areas of pain-she has a

nerve

> stimulator which she wants removed because it doesn't work well any

> longer. Because of it, she can't have an MRI. She's having terrible

> neck pain and spasms, can't even get a Toradol shot unless she goes

to

> the ER. I've had a neck fusion, they found pinched nerves and

bursitis,

> but for the life of me, I can't remember how they were found. She's

had

> a myelogram, which showed nothing. She called me, can't get to her

dr.

> for a couple weeks, and has been taking muscle relaxers, and some

low

> dose pain meds, but the pain is still spreading around her neck,

she

> also has problems with lifting, and dropping things, and being able

to

> twist jars open. Does anyone remember what tests are done to find

> pinched nerves, and the source of neck pain? I'd appreciate any

help,

> my mind is shot with all I've been throught the last couple weeks.

> Thanks

> Jeannie

>

May 15, 2007