I have no idea what's coming next!

[bevjane74]

I wrote a post a few weeks ago regarding the thoughts I had that my hydroxy chloroquine was no longer working - while seeing my consultant I was diagnosed with fibromyalgia, which I presumed would be the end of the diagnoses for a whole, I was wrong, I was diagnosed about 4 year ago with APS after blood tests, then after still feeling unwell was diagnosed with sjogrens, then RA and Lupus, recently I've been diagnosed as having an over active bladder so being sent for a kidney scan to make sure there's no damage to them, which I had to ask for from my GP, been diagnosed with IBS and a few weeks ago fibromyalgia, I asked for a copy of the letter to my GP and went for my usual blood tests done, the results were on the letter to my GP and it says my muscle enzymes are marginally elevated apparently a CK of 202 and LDH of 244 apparently they're going to repeat the test in my next visit (which is in 6 months) this must mean that the hospital isn't too concerned but I'm a bit panicky as I have no idea what's coming next made the mistake of looking this up on Google (trusted sites) and I had to close Google down as it was getting me more concerned the more I was reading lol just wondering if anyone has had this experience?

Thank you so much in advance for any input and wish everyone a happy pain free weekend

Hugs from Bev x

P. S. I'll add my blood test results here incase that helps

Antiphosholopid syndrome/primary sjogrens overlap (ANA positive, hep2 staining speckled pattern, RO positive, LA positive, rheumatoid factor positive, DRVVT ratio positive, anticardiolipin and beta 2 GPI antibodies negative, low vitamin D, satisfactory FBC, ESR - 16, U&E normal, CRP <50 and normal LFTs, muscle enzymes marginally elevated with a CK of 202 and LDH 244

Might as well be in Egyptian hyroglyphics for the sense that makes to me lol but might make some sense to you luffly people

[charlieab]

Hi

Im sorry that you are dealing with so much atm. Ive not got the Rosetta Stone for reading hyroglyphics but I think others will have. But while the instant porridge is in the microwave I can add the little that I do know.

I think LA is the APS anti-body that you have tested positive for i.e. lupus anti-coagulant. Accrding to something I read last week (Clinical Chemistry 56:6

930–940 (2010)), only testing positive for LA (and not for the other APS antibodies) occurs more frequently in people without clinical events (which I guess means things like thrombosis). Im not sure if this is accurate. Might be worth asking doctor. But, if accurate, seems to mean that LA on its own might be less agggressive than also having one of the other anti-bodies.

Rheumathoid factor of course might be what comes with RA. As regards the ANA positive, I think this is positive in about 97% people with Lupus. But, of course, lupus is a clinical diagnosis, and ANA can be positive as a result of other autoimmune conditions. And ANA can be positive without any autoimmune conditions.

The porridge is calling and my limited knowledge might have run out anyways.

Best wishes

R

[Lure2]

Hi bevjane,

I have reread some of your previous post and found that you had a Specialist who did not want to put you any higher anticoagulation than an INR of 2.0 - 3.0. Are you still on Warfarin with that low INR? You have got LA and have had a clot in your leg at least.

I do not understand why you are seeing your GP as it would be better seeing a Specialist. Your GP is not the right person to ask about all your diagnoses; Connective tissue disease, Sjögrens, HS/APS, Rheynolds (excuse spelling but you know what I mean).

I do not know yous present symptoms but most of us feel much better when our blood is steady and properly anticoagulated.

Try to selftest but especially if you have got LA it is important that you do several double-tests in the vein at a hospitallab and in the finger to see if there is a difference between the two blood-tests. You can also have LMW Heparin (Fragmin ) instead of Warfarin as Warfarin can be difficult for some people with especially LA to handle and keep a steady INR-number which is vital for us.

Best wishes from Kerstin in STockholm

[HollyHeski Administrator]

Sounds like you need an urgent appoitment with your primary specialist for them to look at the whole picture. We sometimes go round in circles, one consultant after another who only look at their part of the body, with us our blood goes everywhere!

Sounds like you have a GP who is trying to keep up....

As Kerstin says - how stable and high is your INR and what symptoms are troubling you?

[Manofmendip]

Hi

I agree with the advice that my colleagues have given you.

Dave

[Puska]

Agree with everyone that a specialist visit is in order as you have a lot of positive tests. A positive lupus anticoagulant test (the drvvt) is more associated with blood clots so that is something to work on esp as you've had DVT already. You do need someone to connect all the dots. I've also got APS, hashitmoto thyroid, positive ANA and as well as looking at lupus the specialist is zooming in on scleroderma due to worsening raynaulds.

[Lure2 in reply to Puska]

Hi Puska,

I have Lupus Anticoagulant but I did not know that it was more associated with blood-clots than the other two.

You have a lot of different diagnoses, Lupus also?

Best wishes from Kerstin in Stockholm

[Puska in reply to Lure2]

I think it's a moving diagnosis Kerstin. P S - we were in Stockholm just a few weeks ago and loved it. I've had hashimotos since my 30's and the rest unfolded 25 years later. My niece also has SLE.

[Lure2 in reply to Puska]

Hi Puska,

A few weeks ago we had beautiful weather in Stockholm. This city need that with all the water etc. I love my city! Glad you did also!

Yes, I believe you are right - the diagnoses are mixed up and go within eachother (bad English). Hope you two have good Doctors though!

Take care!

Kerstin