Trying hard to get my head round it all - the second opinion

Mat48

Hi. As some of you will know I have a diagnosis of RA of about two and a half years after about a year of bilateral joint pain and high inflammatory markers and a low positive for Rheumatoid Factor. I've always had doubts about my diagnosis and the lack of joint pain and swelling despite many other autoimmune add-ons plus frequently high inflammatory markers which eventually led me to seek a second opinion.

I decided to go through my rheumy consultant and just ask him straight out if I should see someone else after he had failed to acknowledge the peripheral neuropathy as being a rheumatology matter. My GP decided to take action because he believed this nerve pain was due to secondary Raynaud's. So I take the vasodilator drug, Nifedipine and have so far had considerably less nerve pain and the horrid cold wet feeling I was getting in my legs and my white toes have all abated. I do still have flare up days when I feel chilled to the marrow and my finger tips go bright red and I can't get warm. But I no longer get joint pain with this really - just a kind of flu like ache and a feeling of complete wipe out fatigue. Also my skin on hands and face are very tight and dry and my eyes need eye drops with great frequency as I have no tears.

So not unreasonably I thought I might well be rediagnosed with Sjogrens as a primary autoimmune disease by the rheumatology professor I was to see on Monday for a second opinion. But I was also concerned that I might have Scleroderma or Lupus although my autoantibodies are equivocal so I kept telling myself this was unlikely.

I live on an island so I flew to the big hospital on the mainland to see this professor - who specialises in connective tissue diseases such as the ones I've just mentioned and also Vasculitis and Rheumatoid Fatigue.

He was brilliant. He said he wanted to start from the beginning and took a full history including childhood illnesses, parental health and history of childbearing, any depression and how I was feeling at present. I don't recall ever being asked these things by my own consultant at all. Then I showed him a folder I had made up with blood test results from 2011 onwards and a timeline with photos of swollen fingers, white toes, hive-like rashes etc. He said this folder was a huge help and from it he could say quite certainly that my problems are all autoimmune and that I do have RA. Apparently he couldn't recall ever having seen such clear images of synovial swelling and said this was text book stuff that he would like to show his medical students.

He seemed to fully understand that I've struggled more with the extra problems than I have with the RA and explained that Sjogrens and Raynauds can flourish regardless of what the RA is doing. He explained that I don't have Lupus because by my age (51) and post menopausal state I would have suffered kidney or lung involvement (or both) by now. He was pretty sure that I don't have Scleroderma either having felt the skin on my face and glands in my neck for swelling. He thinks the tightness of my skin might is probably due to extreme dryness from the Sjogrens. Again my own rheumy never checks my skin or my neck or my nails.

Unfortunately, because I have not tolerated Hydroxichloraquine he said there is no way of treating my Sicca symptoms beyond topical meds such as eye drops and gel. The drug I'm on for Raynaud's is all I can take for these connective tissue additions but it does seem to make a difference. The Methotrexate that I'm on at a low dose by injection will not help much with these symptoms apparently. It is for the RA. He did suggest that another immune suppressant drug, Azotheoprine, might help with my skin problems but is unlikely to be enough for the joints he feels and I can't take them both. Biologics, like MTX, might help with the RA if it gets worse but they won't help with the Sjogrens or Raynauds symptoms. However these are unlikely to progress and will probably always be just a big nuisance in medical terms although he feels that the impact they have on quality of life should not be underestimated. But the disease that is likely to progress and will need more aggressive treatment in future in all likelihood is the RA.

He was very nice and sympathetic but also very good at explaining everything patiently and I do at last understand how my own rheumy has been thinking a bit more. Although I am cross that it took my GP to spot and treat the Raynaud's which was giving me so much pain and trouble for nine months.

I do see a dermatologist who specialises in immunology on Monday - also in the big mainland hospital. I'm hoping he might be able to shed more light on why my face and hands feel so dry and tight all the time and also look into what causes the flare ups of hives - although I haven't had one of these for weeks now.

The only thing I'm not sure of is why my ESR has gone up from 17 in January to 62 now and why my other inflammatory markers are all up too. in the past this has signified that a flare is on the way but this time I'm really not feeling in much pain at all. He did say that it's just a general confirmation of autoimmunity. I did query that I would have these extra connective tissue diseases with my autoantibodies all being equivocal but he just shrugged and said that if these were reliable to any great extent then he would be out of a job!

Hope this long ramble is of interest to some of you at least. It is so great to be listened to and understood by such an excellent specialist as many of you will know. However just writing it all up has finished me off! I'm off to sleep now!
Mat xxzzzz

stickywicket

I'm glad you feel happier about things now, Matt. Onwards and upwards

Mat48

Thanks SW - yes onwards and upwards indeed. X

marrianne

Well done Mat for good post ,its rough though I am currently waiting around in the methotrexate room desperate for anti ...t n f to fingers and all things crossed for you,we will get there I am sure Marrianne xx

Mat48

Good luck with getting the anti-tnfs Marrianne. Mat x

Boomer13

Mat, this just confirms for me that all us patients require is thoroughness from our doctors, both in examination and explanation. Then, we can have confidence in what they are telling us.

Glad to hear you had a good appointment.

xxAnna

Mat48

Thanks Anna - you are so right. It's just a question of being able to hold onto the things he explained. I will be glad when I've seen the dermatologist too and have copies of the letters that both send my GP as confirmation of what was said. Otherwise doubts start to creep back in and I think I've imagined it all somehow?

I hope you are surviving - or even better - doing well? Mat x

dibdab

That sounds like a fantastic consultation- it always seems better when we know what we're dealing with. Well done for persisting to get the answers you need.

Deb

barbara12

Mat I know exactly how you are feeling we don't want these disease but to have some answers really does help..has you know I had an appointment like that a few weeks ago and what a difference it make when they to listen you.
I know it sound odd to be pleased but I am for you...hopefully now you will get the help you need.. and good on you for not giving up and getting the right help.. not easy is it...xx

villier

Hey Matt, that sounds like a great consultation, your man sounds the business. I hope between him and the Dermatologist will be able to give you some answers.

Unfortunately I am back to square one. I received a letter from my Neurologist my Cryoglobulin tests have come back negative so it looks like it is not Sjogrens that is causing my problems. There was good news though that the EMG tests show that I don't have damage to my large fibre's yet.

Good luck with your Dermatology appointment we will hear how you go...........Marie x

Mat48

Thanks Marie but sorry you didn't get the confirmation from your test results that you were looking for. Could you not be sero-negative for Sjogrens but still have it. This professor said that it didn't mean much to him when patients have negative antibodies - if they were always right he wouldn't have a job. But I'm sure you are further down the line than just talking antibodies.

This guy told me that he mainly sees people who haven't got clear cut markers for anything but usually do have something autoimmune going on nonetheless. I liked the way he let his instincts and empathy dictate the consultation rather than just shrugging noncommittally and making me feel somehow fraudulent? I mean my usual consultant obviously knows I'm not rheumy presumably knows I'm not or otherwise he wouldn't be putting me back on MTX - but to me the mark of a good doctor is listening and explaining things as clearly as possible. A satisfied patient is less likely to bother you between consultations I would have thought! Good luck with tracking you symptoms down and I'll keep an eye on how things go for you.
Mat x

villier

Thanks Mat, I wont know till next month when I see my Rheumy it was her that ordered the new tests, my esr is always very high but she says it is down to the immunoglobulin treatment I get. I never new anything about sero-negative till I read about it on this forum but would never have related it to Sjogrens, it is a question I will be asking her.

Good luck for next week, let us know how you get on............Marie x

Mat48

Thanks Nicole. I couldn't agree with you more. I know some people are preoared to just sit back and accept things and leave it to the experts to keep their knowledge to themselves. But I don't have so much faith in the medical profession that I think their diagnostic powers are infallible.

I'm a research-led artist so am used to following my nose looking for clues and piecing scraps together. I will research any subject that interests me sufficiently and now this includes my own health. Like you I believe that understanding our health problems enables us to take responsibility for ourselves with the support and advice of the medical profession. Mat x

DebbieT

I'm pleased you finally have answers!!

I'm surprised, after all of that, RA ended up being confirmed, but I'm glad ure instincts re nerve pain were spot on Good for you.

If you doubt ureself you can just re-read ure post Its all there in black & white

Congrats again.

Xx xX

Mat48

That's a very good point you make Debbie. I think there's a reason beyond needing responses - as to why we post updates etc and having a record of all this complex autoimmunity is a big plus. Especially if you are someone who is inclined to disbelieve yourself as I am - this is very useful! Many thanks X

DebbieT

My pleasure

For me, looking back is useful to see if I'm improving in my own ailments but also in my responses to members. I get very concerned coz I say the wrong things at times so I monitor myself a lot .... Paranoid much :shock: :oops:

One thing I've noticed is, I'm not posting about myself very often .... I'm gona have to watch that as I had a brain mri a week ago & didn't post about it!! Not exactly a small thing to leave out eh

Honestly, I'm glad the reminder of re-reading ure posts was helpful

Xx xX

Mat48

I never re read mine Debbie -I'm not actually sure I know how to?! But at least they are there if I ever need them. I'm bad about this forum because I don't get daily members news in e-alerts so I forget to check and then get in a panic that people might have had big things happen to them and I won't know. I am very fond of many of you but just a bit dippy as I take on more than my bear-of-little brain brain can process!! x

Starburst

It sounds like you had a really thorough second opinion,so I hope you're feeling a bit better with regards to your complex symptoms.

Sophie x

Mat48

Thanks Sophie - I was but inevitably as time passes I keep thinking of things I never asked him about. I've had this nagging worry that my RA is much more active than I'm aware of. He asked me what I meant by flaring? I said I mean when I feel ill, unreasonably tired and very cold, with skin problems and parts of my peripheries tingle and burn and I'm very stiff.

I suppose I feel that I might have a complete lack of awareness of pain and I never have had much visible swelling. When I explained that I've come to think of this unwellness as a kind of flare up he didn't say it wasn't exactly but he just said when my hands look like they did on diagnosis again that's when I will be put in anti tnfs.

So why has my ESR gone steadily up from 17 to 62 over the past few months if it doesn't mean anything re active RA? Also I forgot to tell him what my husband flagged up to me - that a few weeks ago a potato went up in flames in our oven and without thinking how stupid this was - I stuck my have in and picked it up in my bare fingers and put it in the sink. It was only hours later that I realised that my thumb and forefinger had brown scorch marks all over them and were blistered.

My husband thought I should have told him this because it either means I have no sensation in my fingers now or means I have a stupidly high pain threshold presumably? And since I can feel my fingers when I work perfectly normally I'm guessing it's maybe the latter. Which is good but it also worries me if I'm meant to rely on pain and visible swelling as the markers of active RA?

How are you Sophie? How are you studies going? In Scotland its exam season so things are a little tense for us with three sons all in midst of these.
Mat x

Starburst

My studies are 99.9% finished, I just have a little more to write up for my placement portfolio. Thank you for asking.

Do you think that maybe there will be the element of unknown with you for some time? Sometimes we do have symptoms that don't always fit but down the line, we look back and understand. Perhaps we just need to learn to accept that they're not all part of one picture but part of several pictures, if that makes sense?

When you don't fit into a diagnosis box, it can be frustrating but we are people, not just clusters of symptoms (which is all diagnoses are, at the end of the day).

Little anecdote; I was born with a rare condition. I am the oldest and so, my parents had limited info on how babies develop. All they knew was their baby had a condition which meant she may never walk or talk or run or sing or toilet independently. I defied the odds, did all those things and was discharged with a diagnosis of an asymptomatic neurological disorder. My mum made herself ill, trying to attribute every little thing down to my congenital condition. She could not let go of that fact that everything must be interlinked and thus, another (treatable)!diagnosis got missed. I'm not suggesting you are the same or that a diagnosis is being missed, just that our brains can lead us to draw all sorts of conclusions when we are worried/scared/anxious/exasperated. Some of us are complex medical puzzles and we have to put our faith in the specialists which is scary when you are a person living this way. When you are so emotionally invested in something (totally understandable and normal, of course) you often cannot see the wood for the trees.

Good luck, Mat. I hope you can find some closure and acceptance in order to move forward. I know you are finding this hard. You are not alone though. We are all with you. (((Mat)))

stickywicket

Spot on, as usual, from starburst. You know you have RA and a good consultant, Mat, so that will be well dealt with.

As for 'the potato incident' – odd, indeed, but I wouldn't regard it as being indicative of much on its own. I'd just wait and see if anything similar happened again. Or, you could do as they do in hospitals and poke your finger ends with a (clean) sharp object to test them. But I'm not sure what, if anything, it would prove.

Mat48

Thanks so much SW and Sophie. Sophie I must say you are so wise for a relatively young one. I'm in the airport departure lounge in Aberdeen having just been to hospital to see the dermatologist - a professor in immunological skin conditions. He spent hours reading up on my notes on the computer screen, looked at my folder I prepared for the one off rheumy prof last week- whom he seemed to know. There wasn't much to see on my face anymore but from photos he said he thought a mix of eczema and Rosacea probably. He stared very hard at the v of my neck where I have a strange permanent rash. He studied my nails and legs and then went back to the computer screen. Finally he came back to my v of chest and said he wanted to take a couple of biopsies and show his young colleague if that was okay? I was panicking a bit about missing my flight but he said he would get a staff nurse onto it ASAP and I would be fine for the Red Cross bus to the plane he promised. He said he had never seen anything like it - it could just be some rare form of rosacea but he didn't think so - "intrigued" he said.

So I'm now sporting a large dressing on my chest just bellow my neck and have a few stitches - all done under local anaesthetic.

And yes you are very right. Seeing a dermatologist took me right back to childhood as I'm more used to joints being the focus of interest these days. I had got so used to autoummume stuff that I'd not even considered the dry patch on my neck and face as something so mundane for me as eczema! And having this dressing takes me back to old eczema days too!

The prof last week went through childhood illnesses and formative stuff and although I didn't mention this I remembered afterwards that my late mum had finally admitted that she never took me to a dermatologist with eczema and alopecia when I was a kid - just got the GP to prescribe steroids. She told me this was because she had breast fed me and not realised until I was four or five months old that she was producing very little milk. My tyrannical gran had insisted she didn't feed me on demand but left me for four hour stretches. There were no health visitors in those days so it was only by chance that a family friend who had a nursing training from the war saw me and gasped saying I was severely malnourished and dehydrated and nearly dead! They fed me in liquid semolina at the nurse friend's instructions and my mum couldn't bear the eczema or alopecia because she felt she had caused it by neglect. I also have two profoundly deaf younger sisters so this added to the feeling of neglect perceived I think! So similarly to you in a way- she couldn't see the wood for the trees with me and my severe eczema went largely ignored except for wadges of dressings to hide it and staunch bleeding and lots of dermovate she coaxed out of the GP!

Thanks to you both - I am determined to draw a line under it all now and biopsy results will take a month anyway and I'm sure it will be fine. Xx

jen9432

Mat, thanks for that reminder that we have to take responsability for our own health. I was first told I had the flu, when my first symptoms of my auto-immune disease flared up. I had to see 3 doctors, before one of them took me seriously and checked my pulse rate at 135!! Nothing against doctors, they have an extremely difficult job and are extremely busy, but they are just people. They are not always right and not always sympathetic. I think in our over taxed medical system the squeaky wheel gets the grease sometimes. If your not squeaking enough you may slip through the cracks. My advice to you all: SQUEAK!!

Mat48

Eeeek - I squeaked and now look at where it's got me? - a a great big padded dressing with the itchiest stuff going on underneath is where! Can hack pain but untouchable itching is another thing entirely! x