Re: a post from a new member in the Netherlands

[Guest guest]

Here is a post from a new member in the Netherlands. She will be translating

our Brochure into Dutch. Angie has sent another angel to help spread the

awareness around the world. Welcome to the group. Your english is better

than mine so please don't worry about it, and you are welcomed with open arms

by sooo many. Please continue to post. Thank you for you story.

hugs

<<

hello claudia,

thank you for your welcome. i hope my english is good enough for you to

understand.

i already received an electronic copy of the brochure from roy robertson,

but my translation will take some more time i'm afraid.

i found the foundation by surfing on the net as i was (finally) diagnosed in

july 2000 with rp.

my gp (changed gp in the meantime) made a few big mistakes, did not know

what he was doing or talking about and finally wanted to send me to a

psychiatrist (shrink?) because in his opinion i needed the attention, wanted

to be ill and on disability etc. etc. but according to him i did not have

any disease. he was my gp for almost 20 years!

in retrospect i " suffered " from rp as of approx. 1990 but was diagnosed with

fibromyalgia in 1993.

my nose inflammated (is that the right word?) for the first time in 1990 and

would do that again for 4 times until the " final time " in 2000 resulting in

a slight saddle-nose deformity.

as from 1998 until 2000 my whole body felt as if it was inflammated (my

knee, wrist, ribs and chest, nose again etc. etc.). the pain was so bad but

all different kinds of painmedication my gp prescribed wouldn´t work.

my gp finally thought i was simulating everything (that´s why he wanted me

to see a " mind-doctor " ).

by coincidence my identical twinsister (is RP heriditary?) got an

inflammation of her outer-ear in april/may 2000 and got two kinds of

antibiotics from her gp. we thought the inflammation was caused by the 10

earrings she had put in in that ear (although she had them for years).

the antibiotics did not work so her gp (very alert) sent her to an ENT in

the hospital. and that is the moment we (she) heard about RP and my search

on the web started.

i knew i was not insane nor simulating so when i found two, very old, dutch

articles on RP in a dutch medical magazine, I ordered some copies and went

to my gp to " clear the air " .

i was very cautious when i gave him the copies of the articles because i did

not want " to know better " than him. he glanced through it and i was allowed

to get a bloodtest done. made another appointment for the next week and went

for the results of the test.

he (and his wife-gp) were shocked because my HBG was 115 (normal=12). at

that time he apologised, admitted he had not known, and i was referred to a

(very good) reumathologist (reumy) in the hospital in Alkmaar.

its a long story but i'll try to leave the emotions out of it so that'll

help making it not to lengthy.

in july 2000 i had my first appointment with the reumy and he confirmed the

diagnose RP, put me on high dose pred. because that was the only medication

possible.

i went camping for three weeks in de summerholiday (with my husband and 3

daughters) and had the time of my life for the first time in years but not

for long.

the pred. made me feel so good and active that i overdid " myself " in

everything. i walked for miles because i couldn't in the past 2 years etc.

in the third week my right ankle and heelbone began to hurt so much in such

a short time that it surprised me and my family. i was in so much pain the

years before and, not that you get used to it, was on a high dose of pred.

so what went wrong????? how was this possible? it so happened that i asked

my reumy before going on holiday what i should do if an inflammation would

occur. he did not think that was possible...

home again, i had an app. with my reumy (sept.) and he told me my innerankle

and heelbone were inflammated and gave me a choice: sit down for 4 weeks and

do not walk to give the inflammated area the rest it needed or ...

put on a cast on the lower leg and remain mobile.

thats an easy choice so i went for the cast.

that did not help much so when it was removed after 3 weeks i was still in

so much pain that he wanted to do a whole range of tests. to speed up that

process he admitted me to the hospital in november 2000 for 8 nights in a

row and then i wanted to get home again. during my stay my feet itself began

to hurt and turned purple each time i let my legs hang down. because of the

pain i was not able to walk and used my weelchair.

the tests (scan, x-ray, bone-density, mri, lots of bloodwork) did not show

anything conclusive so i made a follow-up app. in december 2000 and went

home with still very painful feet.

went back in december and my feet hurt so much i couldn´t walk anymore and

my left lower leg was swollen and stayed that way even after a nights rest.

my reumy did not know what to do anymore so he made an app. for a second

opinion with the " chief-reumy " of the academic/university-hospital in

Amsterdam.

i went there on december 17 and after a lot of tests (again) they made an

ultrasound of my lower left leg... i was admitted at once because there was

a deep veneus (?) thrombosis (bloodcloth?). i'll never forget that day : my

husband was crying because he had to go home alone and tell the girls (then

aged 12, 10 and 8) i had to stay once more and the hospital was not " round

the corner " (50 kilometers from my home-town).

while i was admitted they ran more tests and the bloodcloth was caused by a

LAC-factor in my blood (anti-phospholipid-syndrome) and the EMG made it

clear i had poly-neuropathy in my arms and legs and the sensitory-nerves in

my feet were damaged the most (au).

that was a lot to digest in that time of my life (and my family´s).

i spent almost half a year in a wheelchair at home and because of the pain

(the painmedication i got -a lot!- took some time to kick in) and life was

no fun at all. the pain kept me inside the house and with a lot of help from

my husband, children, twin-sister, neighbours, friends and family i made it

through.

my next reumy-app. is this coming tuesday-morning and i´m happy to say that

i can drive my (small) car to Alkmaar and visit the doctor on my own. the

pain in my feet is mostly controlled by the medication.

october 2001 however i was diagnosed with RA in my hands (both!) and the

pred. was combined with MTX. the MTX-dose was raised to 20 mg./wk and the

pred. lowered to 5 mg./day. the pain in my hands is at its worst in the

morning when i wake up (i sleep well fortunately) when they have " to start

working " .

but looking back on how bad i felt two years ago, i should be happy with how

i am now, but i do not feel that way. it is something i have to deal with

every day (as do all of you) and it is no fun at all. there are bad and

better days but the lack of energy and the constant pain is very annoying

and frustrating.

enough about me.

i´ve been reading the mail from the groupmembers for quite some time now.

you all seem to know each other so well that i am hesitant to join in.

if you think this mail is not to long for the group to read, please let me

know.

i´m sorry to read about the death of angie. i do not know her but i know how

it feels to lose a loved-one.

as soon as my translation of the brochure is ready i will forward an

electronic copy to roy.

i will give the translated brochure to my reumy and tell him about the

foundation.

josé straathof ( " dutch " ess).

>>

[Guest guest]

Welcome josé straathof!

Please don't be hesitant! I am a fairly new member also, and I was

hesitant at first, but within days, I felt welcomed and a full member

of this wonderful community!!!! You are too! I'm sorry to hear that

you had such a hard time with your gp, but I'm glad they finally

figured it out! Good for you for being so persistent!

Take care.

M