[loopy loo]

Hi having looked as this web site for a couple of yrs have decided to list my symptoms to see if i am stir crazy or whether somone else may have experienced the same things.My fingers are so stiff it is` hard to type so here goes-
headaches, nausea, fatigue, weird ulcers over body, pain in knees/weakness, asymptomatic pericarditis, night sweats, dry eyes/discharge, swollen painful fingers, white fluid filled spots on hands, hairloss, bruising, depression, skipping of periods.

Havin had several negative blood tests for lupus as well as other conditions iam getting to the end of my wit having been told it could be a mixed connective tissue disease. i have two children and am 28 yrs old and the only time i have felt well was when i was pregnant!!! Any ideas please

 

[onetay]

Connective tissue disease is very similar to the lupus but they are different. The treatment and testing is the same so as long as you get treatment that is the important thing. Sometimes a biopsy is taken to totally rule out lupus in combination witht he neg. lupus blood tests. Do you have any rash or sun sensativity at all?

To many times on here I hear or am I crazy. The symptoms are there and there is something wrong it just takes time to weed out what is really going on. No one is crazy when things are happening to you that is real and so is the fatigue and pain. The outside world sees us as lazy and whinny but we are far from that as this site proves that.

Having said all this keep on your doctor for answers as to why this is happening to you. If needed ask for a referral to a dermy or rhuemy appointment. There is medicine for the depression and if put on the right one it does help. I take a fluid pill for the swelling (well really I take two as I have swelling bad in my body). I hope that you start feeling better soon and find out what is going on with your body.

 

[lin]

((((((((((HUGS)))))))))))) you know this is the thing you can also be going back and to the doctor's for a long time before a DX for lupus, that i know

they wait till things show up and it is not easy as ppl may think, trying to see if you have that or not,
its the waiting game ,but dont let that stop you going back and to to your gp, i did, and in the end i was sent to a rheumitologist, i was sent as my ANA was high, so dont give up with things




good luck xxxxxxxxxxxxxx Lin

 

[loopy loo]

Thanks for all the advice, have a doc appt this week and opticians to re check my eyes-
It was actually a dr at london bridge who sugested mixed connective disease a few yrs ago think his name was decruz he also saw me at the lupus centre at guys so i may go back to him if no joy with GP !! Its worth paying pvt to get answers !

 

[ALWIN]

I would not hesitate to go back to Dr Cruz.

Have you been checked for Sjogren's syndrome re. your eyes? Dry eyes with stringy mucus is a symptom. There is a simple test for it and Sjogrens gives many symptoms similar to SLE. You can have both, of course and more, but I do hope not.

A lot of the people on the site seem to have mixed connective tissue disease. I am unclear about its definition, but have always assumed that a person with more than one condition associated with connective tissue disease or similar autoimmune disorder could be diagnosed as 'mixed', so kind of lump myself in with that group. If you check I think more people have more than one condition on here. I tell people i have sle rather than gonig through the list and watching them glaze over

I am pretty sure it was Dr Cruz that shoved the strips of paper in my eyes to help diagnose dry eyes, etc. He was very nice and I am sure if you were to write down your questions so you don't forget them he would be only too happy to answer them.

Take good care. x

 

[Lily]

Hi

If you can afford to go back to London Bridge and see Dr. DeCruz then it's probably well worth the time and money. Obviously this isn't going away :hugbetter:

He may have said UCTD (undifferentiated connective tissue disease). Which means you don't have enough clear signs of one particular connective tissue disease to diagnose specifically now but it's clear you have some kind of CTD. MCTD is different altogether............it's has a specific blood test which will show high levels (RNP) and certain diagnostic criteria. Either way, it's true that these collective diseases are treated much the same, starting out with something like Plaquenil and adding other meds if needed depending on symptoms.

Good luck and don't be fobbed off, you deserve to feel better.

love
Lily

 

[greenhaggis]

HI, If youve already seen Dr Cruz via the NHS even a couple of years back it should be so much easier to get your referral reinstated via your GP. I would even phone Dr Cruz's sectretary and ask them direct about the reinsated referral, perhaps there is a way round it without GP help. Perhaps try that method before paying to see him privately! He wont treat you any better privately compared to NHS - he is same person!

Im suprised that Dr Cruz did not suggest any medication to help you when he last saw you, perhaps he did!

Take care anyway!

 

[loopy loo]

yeah will do! he did suggest steriods which i took for a couple of weeks but then i found out i was pregnant after a yr of trying so stopped taking them.

i actually felt fine during pregnancy it was only after i got the joint pains and lethargy come back. I didnt feel too bad so just carried on as normal and then fell pregnant again which made all my symptons once more disappear ???(appart from another dose of pericarditis)

my second daughter is 3 mths now and symptons have returned including new ones like nausea , headaches, swollen fingers and the dry eyes hense i am returning to try and get a diagnosis for the sake of my kids !xx

 

[dixy]

Hi

so sorry u having such a bad time of things. I Have sle and mctd overlap. So maybe u could have these also when was the last time u saw u rheumy

wish u well hope u get dx soon

dixy