View Full Version : Hello Newbie and Awaiting diagnosis

melly c
02-19-2010, 10:23 AM

Im new today

Im undergoing test since augist 2009 for sle lupus,i have previously been diagnosed with inflammatory arthritis but treated as RA age 17.
Then re diagnosed january 2008 as Sero Negative Rheumatoid arthritis.
Then all changed Rheumy spotted Butterfly rash Augsust 2009.

did brief test after Gp had done a ANA test was slightly postive.
Then Rheumy re did same test negative.

BUT still butterfly rash.

seen by new Rheumy November 2009.
diagnsoed fibomyaliga,and told definteley either Sle lupus or Rheumatoid arthritis sero negative still and may take some years to be sure.
dads diagnosis took many years after mis diagnsois with fungal infections then he saw a dermy speicalist who did biopsy to see and was postive for dle.
started on anti infalmmtoires age 17 then steriods injections occsiaonally worked fine full time.
remisson age 23 discharged.

re started up but wasnt aware signs then age 30 plus married and signs recurring via alot of infections.
abscesses etc.
re referred after hubby had major op finally took leap see new gp as old one struck off who id been trying tell im not well refer me and wouldnt.
u know the hychodriac story they give u if visit to often.


new gp furious id left it so long tried anti inflamtoires this time did not work and so after 3rd visit referred me to a london hospital.
as previously was outside london and seen private at first then nhs as so young seen asap at age 17.

anyway on we go.

so new rheumy after 1 month the above ra diagnosed put onto methotrexate as NSAIDS had not worked.steriods worked a treat had few injections while waiting for referral as hospital lost it 1st time.

so now i have

inflammatory arthritis so far non erosive

rashes facial redness
sun sensitive
fever on off
problem with lighting hospitals shops.

chest trouble on/off
joint pains
muscle pains,fatigue.
gynaecolgy problems diagnosed endometriois december 2009.

seen occupational therpaist for hand therapy spring 2009

had flat assessed and adapted 2009
closed buisness down was massage therpaist but not giving up on that idea to re open.

currently doing couple course 1 at time online to re educate myself so can go back to another form of work.

skipping back to new rheumy

hes added planequil 200 mg and is helpin bit with rashes,also added amitrilpine for fibro wow what a miracle sleep right thrw nite now little muscle pain which had got to point stopping me sleeping well.
i do have pain relief take as required.
im married 2 cats.
and love have laugh.

ohh my great gran and my gran all had lupus sle type.
my dad has dle discoid type lupus.

and alot other auto immune bits in family.
new rheumy has reasured me not serious parts lupus for me at moment and will keep close eye on me.
so he did urine test and lots bloods again. also xrays they fine.

and a test for APS.
gp does my mtx bloods monitoring every 4 weeks via local hospital.

i also had physio last year for bad case tennis elbow,which does reoccur.

So thats about ti really.
nice meet u all.

ohh and dad was diagnsoed 4 years ago but only when i was having tst for lupus first lot did he ask gp what he had as ddint understand what hed got an hey ho dle type lupus and then he remebers his gran my gran al ahd it.
so ive told new rheumy all this and its now noted on family history alogn wiht aunties psrioac artritis and grans ra.etc

seems to be helping alot with enw directions rheumy is taking with my care test etc.

right now im experecing facial problems.
umm like hives on cheeks,hot then stingy raised areas,along wiht few dry raised patches. hoping they stay eveident for rheumy app in 2 weeks.

melly c:cute:

02-19-2010, 11:38 AM
Welcome Melly C,

You'll find this is a wonderful group of people. Hopefully you will get a straight diagnosis soon. Have patience and remember that we are all here for you.

Take care,

Living Life to the best of my ability!

02-19-2010, 02:48 PM
Hi Melly,
Welcome to WHL. You've had quite a runaround. You would think that with your family history, it would have been a lot easier to diagnose. If you read through the threads here, you'll find that many of us have been through many of the same frustrations. Feel free to join in the conversations here, and to ask questions. There's usually someone here willing to chat.

02-19-2010, 07:55 PM
hi melly,

welcome to our family. You have really been through a lot and starting at such a young age. I can tell by your report that you have learned how to stand up for yourself, and how to work with the drs. and their treatments. So glad you found us, and i hope you will keep in touch.

Angel Oliver
02-20-2010, 10:35 AM
Welcome to the forum and wow you have been through allot.Hope that rheumi see's your rash,take photo or video it on your phone for proof .Catch up with you soon.

Love Amanda.xx

02-22-2010, 08:15 AM
Hello and Welcome to our family:laugh:

I am so sorry to hear that you've had to endure the run-a-round! But I am happy that you found us and I hope that we can offer you some insight, understanding, and let you know that you are not alone!

Peace and Blessings

02-22-2010, 03:17 PM
Hi Melly,

I am sorry, that you are having such a hard time to get any answers.
Most of us have been in that same boat for a while. There is hope, that you will find out and finally get help.
Hopefully for you it will be soon.


02-22-2010, 06:21 PM
Welcome.....what a story. Hang in there..I would take a few pics of the rash just in case it fades away by the time you go back to the MD. You can show them that it really was there!! Lots of great info here to be had.

melly c
02-23-2010, 06:17 AM
Thank you everyone for such kind welcome

rash has died down so didnt get to take photo,but if re appears i will do so.
i shall have go at reading threw site bit.
i did post 1st post on drugs section.

thks again.
melly c

02-23-2010, 09:24 PM
hey melly,

this site is very user friendly...once you have traveled around for a bit, you will be a pro....so glad you joined our family.

melly c
03-03-2010, 02:01 PM
not been on much very sick bug some sort possible infection,on road to recovery grr.
when im upto it il read more post more.

thanks for the lovely welcome to site made me feel quite at home.
melly c

03-03-2010, 07:08 PM
hi melly,,,,so sorry to hear about the "bug" that has invaded you life....there a a few nasty ones making their way around.

definitely check in with us when you feel better. take care and try to rest.

03-05-2010, 11:59 AM
So sorry to hear that you are sick. I hope you get better soon.

Peace and Blessings

melly c
03-08-2010, 04:43 PM
Hi Thanks nasty bug now gone left me with painful gland tired bit weak but cart complain as always someone else much worse than me i always say.

got rheumy appointment this week quite nervy alot of blood results to come back.

he took about 11 bottles

for hughes syndrome,diffferent lupus tests etc,unrine test.
got get my blood results for this month regarding mtx asap so can show rheumy along with a brief list how i been any big concerns since 4 months ago at last appointment.

havnt got chance yet look round all site ps i do also belong to another lupus site this one great aswell.
only thign missing ehre is chat room unless i missed it.

thanks replying means alot.
melly c