rheumie report

October 4, 2007

Hi All, please excuse any confusion, I’m VERY exhausted so this is a blanket

post to friends and groups.

Well, we (driver & I) left at 9 am, got to the Rheumie’s, who was running

almost on time for once! Sat down, and basically he just said I MUST see a

neuro because of the positive MRI and neurological symptoms. I told him that

his recommended viscosupplementation joint injections would not do for me as

any needles, even acupuncture, set up a huge state of inflammation for a

week or more. Good thing about this guy – he listens! He totally got it. So

he also said that cortisone injections would not be a good idea…absolutely,

I do NOT want to go down that road if at all possible. But then I said that

our previous appointments were very confusing, and I wasn’t sure where we’d

got to…that the main thing for me was not the knees but the hip/SI and other

PAIN that has been getting worse for over 20 yrs! And various other joints

that totally seize up from time to time. And could we go over that please.

So he was really good I thought, and explained that although I did have an

inflammatory arthritic condition, the lab findings were such that he could

not specify if it was AS or RA or whatever, that I was definitely developing

it, but it would have to be more progressed to define it. I asked if there

was anything (beyond the supps I am already taking) that could be done to

retard the progress. Answer: no. He was quite bullish that as I have an

anaphylactic history with ibuprofen, I should NEVER take NSAIDS or hibs.

(Quite right!) Also that the neurological component was probably significant

with the pain (Duh!). He thought that Neurontin or Gabapentin would be good

choices (and yes, they are having good results with these for ME pain

syndromes). BUT, could I just put up with it a little longer as they would

affect the neuro exam etc.

I think he really called me in because he, like I, was not satisfied with

how things were left. I feel he gave me fair innings now. So the great thing

was that we were able to whiz back out to the ferry and snuck on the 1 pm so

I was home @ 2 (totally blasted of course), instead of the 3 pm./ home @ 4.

I got home to a message that the neuro appointment is FEB. 20/2008! Rheumie

did concur that this is the absolute best guy to see for someone like me,

that he is really expert – the best at sorting out these multifaceted,

confusing type conditions. (Said rheumy will not use the name ME.) It’s just

a plus that the neuro is closer (shorter ferry, shorter drive).

So I figure it is better to wait longer to see the right one, than blow my

shot with some jerk and have it come to nothing. But 4 months! That’s

ridiculous…I may see if the Rheumie or ID guy will help goose them along a

bit. Oh I am such a demanding patient! Oh well. It’s only 1-1/2 years since

the big brain insult <sigh>, now…more by the time I actually see the neuro.

At least, after over 20 yrs. of ME, I am finally getting some kind of

medical assessment and possible care. Let’s hope. XOX Aylwin

October 7, 2007

Thanks Sandrea…I will go on the campaign to get there sooner…after the long

weekend! Four months is a lot…he must be really good! As to the pain, I have

partial control with the Curcumin and other supps I’m taking…I’m allergic to

so many drugs that it’s tricky. I’m just not wanting to spend another winter

all seized up as I always get more pain in the winter. Anyway my sense of it

is that there is not a lot of degeneration so much (yet <sigh>) as a lot of

inflammation…so perhaps that can be dealt with at the brain level. I’m

really glad that you are getting to the ENT so quickly! Here’s hoping he can

sort all this lung business out with you. Good Luck, and let us know how it

goes! TC, Aylwin xox

October 7, 2007