Not naming names but where do I go from here?

[bestbuddy]

Hi all,

I have not posted in a while as I have been really unwell after shoulder surgery which has taken me 5 months to (not quite) recover from. From my other postings you will see that I have hypothyroidism (mostly probably Hashimoto's), coeliac disease, lichen sclerosis, high blood pressure and currently under a rheumatologist being treated for UCTD....so I am battling each day with many symptoms and had to resign from my teaching job due to being in so much pain.

A year ago the good people on this site recommended I request a second opinion with a well respected rheumatologist in Manchester who I have seen recently. This person was incredibly thorough and gave me a great deal of time by listening to all my symptoms. He ordered his own blood tests and sent me for x-rays too. I have been back since for nerve conduction tests and he has ordered a lip biopsy to rule out sjogren's syndrome. I will go back in a few months for all the results to be discussed etc. Quite honestly, it was phenomenal the care I received...why could they order so many tests when my ordinary rheumy kept sending me back to my GP?

The problem is, he confirmed that I most definitely have osteoarthritis (hands, wrists, knees) and probably wear and tear in my neck. He does not believe in SERONEGATIVE LUPUS despite some obvious similar symptoms. I cannot tell you how frustrated I am as I am still hovering in limbo land. I know there are many people on here who have been told they have seronegative lupus?

Two tests that did come back which I am rightly concerned about as they indicate tissue damage to either the heart/liver/ kidneys etc are:

LDH (slightly elevated) 217 u/l (20-220)

ALT 53 u/l (5-40)

I am to keep up with the Plaquenil; surely this is for people with connective tissue disease not OA?

I have my regular rheumatology appointment tomorrow (with my first rheumatologist) and feel awkward that I requested to see someone else. Quite honestly he has fobbed me off so many times that I feel it is almost a waste of time going but I will have to continue to see him when the second opinion person discharges me later in the year.

I am feeling really wobbly and unsure of all the medical problems I have as it is all so unpredictable and debilitating. Any kind thoughts would be appreciated

Thanks in advance for reading this long winded post

Best Buddy

[Hidden]

Buddy I can so relate to everything you have been and are going through. I have been in a similar plight with longstanding Hashimoto's and a diagnosis of seronegative RA - which is thought to be non erosive and mild plus lots of other debilitating things such as small fiber neuropathy, nose bleeds and sores, allergies including alopecia, eczema and Rosacea, Sicca and Raynauds. I was taking Methotrexate as well as Plaquenil and briefly, Sulfasalazine but failed to tolerate them all so was taken off after three years by my rheumy and told we would watch and wait.

Like yours my doctors don't seem to believe in Seronegative autoimmunity apart from RA - so I asked for a second opinion last year. I did this through my GP and rheumy by writing a very frank letter to my rheumy explaining that mild RA didn't seem to cover what I was feeling at all.

I did see an excellent CT professor who went through my bloods and looked at photos of my hands a few years ago and skin problems. He explained that autoimnunity and RA were both 100% for me but the rest was questionable. He told me that at my age (51) Lupus would be getting better not worse and I would definitely have organ involvement by now. He also told me if he went by autoabtibodies he would be out of a job. What a star!

I then saw a neurologist about the Perpheral neuropathy and he and my own rheumy agreed that it was small fiber neuropathy and I've now had many tests to see if it's immune mediated. Nothing has flagged up yet - just waiting for results of skin biopsy of legs done last week.

All I know and care about now is that I'm plagued by ill health and exhausted. I saw my rheumy again for first time in nine months on Thursday and was very straight - in as charming a way as I could muster. He has commissioned a chest X-ray and more autoantibodies but did at last agree that I have a multisystem autoimmune disease - still under the broad heading of RA. He also agreed to let me try Azathioprine once i'm clear of recent chest infection. Very relieved to get seronegativity acknowledged at last. Hope he sticks by this when skin biopsy and latest bloods come back negative as they surely will.

I know UCTD is not the same as a diagnosis of RA. I also realise that many doctors, including my neurologist, won't accept Sjögren's can be seronegative too. I just hope you can somehow charm a similar result out of your rheumy too. If this appointment hadn't gone my way and has I not been so unwell when I saw him on Thursday - I think he would have been dismissive. However I was tactical and talked him through the second opinion and played down my arthritis with him this time. He knows I have wear and tear in my neck and can see it in my fingers but always dismisses it as just that - ageing etc. I feel it's come on too fast since I was off drugs to be all that normal and isn't RA but is something inflammatory.

But playing it down and playjng up my systemic symptoms - which he can't really argue with - was key to getting somewhere at last. I hope you can find things in my tale to take away and use perhaps? Best of luck. X

[bestbuddy in reply to Hidden]

Thank you for your response, it is comforting to know that there are other people who struggle on fighting for a diagnosis in the face of many symptoms that doctors see reluctant to connect.

The second opinion rheumatologist is a highly respected Professor in the UK and with 35 other notable Doctors across Europe, they agree that there is no such thing as seronegative lupus. I know this will upset and frustrate many on here as well as myself, but that is what I was told.

Currently I am fighting so many daily issues it feels futile, like fighting the tide. I hope you also get some resolution soon

BB

[Hidden in reply to bestbuddy]

Well the professor I saw at the connective tissue clinic last year is also one of the most re-knowned academics and one of the UK's top Vasculitis specialists and he was adamant that autoantibodies are fairly meaningless to him.

So who is right here? If you read up about Lupus it usually says 10% of sufferers have a seronegative form. With RA it's 30% and they can't really dispute this because many people with SN RA have very specific erosive synovial joint damage which is quite different to OA. Also Hashimoto's is autoimmune and many RA, Sjogren's and Lupus sufferers have it so to my mind it all comes under the heading of autoimmunity. What is more if even my very conventional rheumy accepts this at last then I don't think your guy is singing from the same songsheet as the majority of rheumatologists - including equally senior people.

When I was at the EULAR congress last year (as a guest speaker) I attended many sessions where experts spoke about seronegative manifestations of rheumatic disease. So these 35 you refer to would be a drop in the ocean compared to the ones who do believe in seronegativity. Rheumatology is too complex for these hard and fast rules I feel. Maybe you need someone more enlightened? - preferably through the NHS.

PS you may not have full blown Lupus - have you looked into Ankylosing Spondilitis and other types of spondyloarthritis such as Psoriatic Arthritis - all seronegative?

[Hidden in reply to Hidden]

PPS - it's also very convenient for them to keep spinning us out with this refusal to think outside the box or to acknowledge seronegative rheumatic diseases. Apart from DMARDs, the drugs used to treat seronegative arthritis are terribly expensive and so only people with very clearcut disease patterns and markers will qualify in the UK. I was lucky in the end that I didn't tolerate Plaquenil and had to stop taking it. I even wonder if it was responsible for my small fiber neuropathy as the inventor of the Biologic drugs in the UK told my friend it could lead to total paralysis for a few.

[Fennella02 in reply to bestbuddy]

Hi BestBuddy. I agree totally with everything that Twitchy says. I will be brief and say that after carrying a diagnosis of ANA neg Lupus since 2001, I have recently been reviewed by a highly regarded Professor of Rheumatology in the Midlands. I have zero antibodies to absolutely everything but demonstrate clear evidence of auto-immunity. As I do not satisfy all the SLE diagnostic criteria, I now carry a diagnosis of UCTD (SLE sub phenotype). This revised diagnosis has made no difference to me at all - the disease process is the same as before and the treatment is the same. I have been lucky enough to have my auto-immunity recognised and treated from my first ever Rheumatology appt but from reading other people's stories, the greatest challenge seems to be getting that recognition. Keep plugging away, the 'right' Doctor will see what is going on and will be sufficiently experienced and broad minded to look at the bigger picture. I wish you the best of luck. Clare x

[bestbuddy]

I couldn't agree more...but I feel he has given me his word and I can do no more than to accept it at the moment. Among my symptoms I have costochondritis, nasal sores, mouth ulcers, mild kidney impairment, sun sensitivity and photo sensitive rash, high BP, joint pain, muscle pain, tinnitus, hiatus hernia, acid reflux, abdominal pain.....the list goes on. I saw a rheumy at age 29 ( miscarriages and then infertility). Then I didn't see anyone else til I turned 50. Now age 53 I needed a second opinion after a very long history of tennis elbows and frozen shoulders...as well as just having two shoulder operations within 18 months of each other for calcific tendonitis, bursitis and bone spurs.

It's like stop the world I want to get off. Any Wonder I had to give up work? I returned this week to supply teaching...no planning, prepping, marking or assessments or essay marking. I can walk in and walk out.

Thanks for all your comments,

BB

[ripon1756 in reply to bestbuddy]

You should have an MRI scan and o find out what is going on with your bones and to rule out AVN.

[bestbuddy in reply to ripon1756]

Can you explain what you mean in further detail...sorry I am a novice on all of this. Quite shocked to realise that my knees and possibly my neck have OA as well as my hands and wrists...thought all of the pain was muscular / tendons and cartilage trouble. I feel I am falling apart as I have horrendous acid reflux since taking NAPROXEN in November for the pain post shoulder surgery as well as everything else and other conditions to manage.

See my own rheumy today and feel a little anxious....what will his response be me requesting a second opinion...is it like saying he is not good enough?

Thanks

BB

[ripon1756 in reply to bestbuddy]

MRI means Mirror Resonant Imaging.

AVN means Avascular Necrosis (blood not circulating round bones. Mine was caused by being given steroids for a short time for an overactive thyroid gland problem and several years later I was diagnosed with AVN and had to have both my hip bones replaced.

[Purpletop]

You say that your LDH is slightly elevated at 217 but the upper normal seems to be 220, is that correct? Because in that case you're still within the range.

As for ALT, that's not such a highincrease - I had it 5 times the upper limit and the liver etc was fine. In the end it stabilised with immunosuppressants, I suspect it was caused by the lupus before treatment.

Yes, I am diagnosed with lupus because I had the luck to see a rheumatologist who believes in seronegativity but since the diagnosis I had 2 neurologists challenging that. I just ignore what they're saying - they weren't the ones who saw me after 3 years of weird symptoms, trying to get to a diagnosis - barely breathing and so weak.

It infuriates me when I read of doctors not accepting seronegativity - I feel like saying to them: ok, then go on and find out the proper cause of this if you think you know better. Don't just shove it under a wishy-washy label and let the poor patients suffer while you pat yourself in the back about how clever you've been. Argh!

[bestbuddy]

Ooooops....I think that should have said 271. I know it is a small increase but nevertheless still over the upper range and they have asked for both to be repeated. With the development of mild kidney impairment last year, I still don't understand why they are not seeing this thing morphing.

You are right, because I requested a second opinion by a highly respected professor, I feel I have no further option but to accept what they sugget....he even said I have a low pain threshold...now that is an insult to someone who suffered the most agonising endometriosis for many years as well as everything else. Hence....where do I go from here when age 18, 29,50 and now 53 they are saying Seronegative. My antibodies for thyroid and coeliac will be almost zero due to strict GF diet since 2002.

Groan,

BB