Re: TN

[Guest guest]

Kate,

I know this is a bit late.. and I haven' gotten to the other 200

emails that are waiting to be read & responded too.. (things

have gotten really really wacky round here.. so I'm playing

Ketchup again)...

I actually LOST 8 pounds during the time I did the 3 day

Solumedrol then the 10 day (or more?) taper with the

Prednisone..  Yes, those drugs will increase your appetite

without you even realizing that they have.. and my first

neurologist refused to give me Prednisone for something that was

going on.. because I had put on 12 pounds between Thanksgiving

& Christmas (come on.. it was the holidays!!! LOL)..

BUT this last time.. knowing that I would be putting on weight

during this course of medications.. I started Counting Carbs

(like many diabetics do instead of the exchanges these days to

stay in tight control).. So I looked up the info on Counting

Carbs again, and started watching and counting while I was in

the hospital (and I did have to have insulin injections during

the 3 days of Solumedrol.. after every meal).. and I continued

to count carbs the whole time I was on the Prednisone after I'd

come home.. I think I picked the setup to maintain my weight..

but might have gone the route of losing weight.. I don't

remember for sure..

I did not go hungry while counting carbs.. and having a

definitely 3 meals a day type thing going.. I took off the 8

pounds.. then when I quit counting put that plus a few back on..

For some reason now. I'm losing again.. I dropped from 212 to

195 between my neurologist appointments... last fall August or

September, and then April of this year.. I don't know if the

weight loss is a side-effect of the Keppra, which was added last

fall.. and I'm not really going to worry too much about it.. I

just bought a pair of 44" waist men's jeans (they seem to fit

better).. because the 46's that I had (for going out and having

to wear a Depends) got to the point that even with the Depends,

they kept trying to fall off.. and NOW the 44's have a two inch

gap between skin & jeans.. so.. 42 here I come.. and maybe

my 40s.. and then hopefully my 38s.. and on down to my 36s

again.. (which is pretty much equivalent, I think to 13/14 or

15/16 depending on the make and/or model of the jeans)...

So maybe if you tell your neurologist that you'll do the

counting carbs thing to make sure you will NOT put on any

weight, and possibly even lose a few.. maybe he'll reconsider?

And I'm hoping and praying that I'll read that you have gotten

something that works for the TN and by the time I get through

all the mail waiting to be read, that the TN will be gone

completely

And Sharon as well...I don't do facial pain well myself, so I

can only imagine the type of pain and suffering that you guys

are going through.. I'd want to scream and cry.. and look for

ANY narcotic that would at the very least allow me to sleep

through a flare like that...

HUGS

|)onna

Unfortunately, my neuro doesn't believe in

Solumedrol/Prednisone; he feels that it affects my mood too

much, as well as adds weight to my already heavy frame. At

least that is my understanding of his position on it. I'm

hoping the baclofen will ease things for me. In the meantime,

while I'm waiting for it to work, I'm suffering tremendously.

I may just call him back and ask for some real pain med, like

codeine for the meantime. Not sure he'll comply with this or

not.

Thank you for the love. I always feel it from you as well

as the group. I love you Sharon.

Kate

From:

Sharon

To:

MSersLife

Sent: Tue,

May 17, 2011 10:15:26 PM

Subject:

Re: TN

 

When I had the TN

flare time before last, I researched and found flares

were being treated with prednisone.  I took prednisone

and it did help.  The pain eased off.  I hope and pray

the doc will give you prednisone and it will also work

for you.  Sending love your way!

hugs

 

Sharon

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