I have no idea what's coming next!

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

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  • 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

  • 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

  • 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?

  • Hi

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

    Dave

  • Hello - I have read through your many tests and diagnosis and what is screening back at me is THYROID! This Fibro dx is always a suspect for thyroid and the fact that you say that your plaquenil is now not seemingly working another clue. If you go to your GP id bet they will only test your TSH which is pointless. You need a full blood panel done of your thyroid testing FT4 and FT3 along with the autoantibodies, TPO and thyroglobulins. Id also get Vit D, B12 and ferritin checked as many of those if they are low will not only affect your thyroid but have cross over symptoms.

    Given that you are struggling to get much sense out of your GP, I would think about getting private tests done for the above which you can arrange yourself with Medichecks, who have a "Thyroid Thursday" with discounts or Blue Horizon. If you go to the Thyroid UK site or join their community here on HU they can give you details about those tests. If you need help with the results then come back to us.

    Once you have them then you do need to go to a specialist who understands autoimmune diseases, especially ours and how it interacts with others. As you know Sjogrens and Thyroid often run together which is why I think you need yours looking into quickly. It many well be that you also have Fibro, which is a condition of a hyper sensitive state and can be brought on by the body having to deal with a heightened stressful situation, be that infection, disease mental, environmental etc. In most cases if you get the rigger under control then you can get rid of so called Fibro symptoms which are nearly always the result of another underlying, untreated condition.

    We have a list here of patient recommended Doctors which you can look at. Remember what is one patients good experience is not always another but it at least gives you a guide. There are also private Dr's if you want that route, which can at times be helpful to get a firm hand on dx and treatment options to take back to local medical advisors to move forward with.

    I feel you are almost there. You just need to get this final bit settled and then you will find things will improve for you not only physically but also mentally because you will feel more in control.

  • Oh! One final thing I forgot to mention. You said you have IBS - thats quite common with a mixed autoimmune picture but is more likely to be sensitivity to Gluten, Soy , Lactose, Dairy etc. Many of us feel better on a GF diet to start with and it has shown that it lowers antibodies due to the fact that it removes an inflammatory product from our systems. I then found that Soy was another huge problem and then cut our Lactose too. Since then my "IBS" has improved no end. If you have a Thyroid problem then its common to also have Non Celiac Gluten Intolerance if Celiac Disease is first ruled out. They are finding that the difference between these two are not very much symptom wise. Doing an elimination diet of each of these irritants will soon tell you if they are causing you issues.

  • 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.

  • 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

  • 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.

  • 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

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