Careful1

Looks like petechiae. I am prone to them as well. Everytime I get my blood pressure taken, I get them all down my arm and last time even my hand

Did you have your CRP tested? If so what was the result? Just curious cause all my tests were negative but my CRP was high.

Krawlins in reply to Careful1

Hi Careful 1 thanks for your response, I'll look up petechiae. I've had a CRP in the 30s and ESR similar, it was because of these and my hair falling out in handfuls that got me referred to rheumatology but they did more tests which were negative and that was that. My RF was 10 but I've heard of much much higher results than these. What was your CRP?

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Careful1 in reply to Krawlins

I had one in May that was 7 but ESR was only a 2 and I had one middle of July that was 20 but no ESR was performed that time. In May I saw the rhuemtologist and he ran so many tests. Every last one was negative except for TB test but I have latent TB and so it will always be postive...

I have so many weird things going on with my body since last year and have yet to find an answer. A couple drs I saw thought I had liver disease because I have spider angiomas, palmer erythema in both palms, broken veins all over my face, and my regular veins that weren't visible before started showing through my skin all over my body buttttt other then having an enlarged and fatty liver there is no disease. I have also been having dizzy/lightheaded spells and flushing.

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Krawlins in reply to Careful1

I've thread veins on my face too, as a child I had quite a prominent spider angioma under my eye, I was perhaps 11 or 12? On Saturday I woke up very tender either in my bowel or spleen but that wore off after couple of days. I get lightheaded too, no one seems to link all these little things, I've often wondered about lupus or a CTD but I'd probably need for my hair to fall out again to get referred back, when that last happened I had two occasions of vomiting for no apparent reason and had a bleed in my eye a couple if times, all very strange. Hope you get some answers soon x

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Careful1 in reply to Krawlins

Hmmm, I have had a bleed in my right eye before.

I am trying my best to get some answers. I am currently waiting on some test results from the endocrinologist I saw and I am seeing a genetic dr on the 13th of this month. I have seen so many drs in the last year it's crazy. Lupus has been brought up many times for many years but my tests are always negative.

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Krawlins in reply to Careful1

We seem to have a lot in common, if you ever get a diagnosis please let me know. How old are you? I am 57

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Careful1 in reply to Krawlins

I sure will and I am 36 years old.

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Careful1 in reply to Krawlins

Do you by chance ever get splinter hemorrhages under your nails? And how are your finger nails? Mine are very rigid like a ruffle potato chip 🙄 I seem to have a ton of vascular skin issues as I also have livedo reticularis. To much information I know but lately, I have developed a ton of tiny broken red veins on both of my breasts too.

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Krawlins in reply to Careful1

No, nothing wrong with nails only that they're very weak and the ends peel off and flake in layers

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Careful1

Would something be off with INR or platelets if someone had this condition?

Hidden

Hi was very interested in your case as I have been told I have been fine for over 30 years tests always coming back borderline or negative but now showing positive. now I have been told I have suspected lupus and blood tests finally showing positive. I too have them little spots on my feet like you. Do you feel you could go private and get an appointment with the lupus specialists at st Thomas hospital in London. It may give you answers as you are clearly not well and as lupus is difficult to diagnose what they tell you are different conditions could all be caused by lupus. In the early stages or when your symptoms are minimal some tests can show as negative but fast forward in time and they can change. I would go to your Drs and request all of your medical notes. Tell them it’s for your records so you can better understand your illness and so if they are needed by other specialists you have them to hand. Some Drs are not wanting you to have them and they don’t always tell you everything. If that’s the case change Drs then re apply for your records. A new drs surgery is more likely to hand over the notes. I am just about to be diagnosed with lupus after paying private to see a rheumatologist called dr Jarrett here in wakefield and he’s found lots of things wrong with me and has told me he suspects it’s lupus after every dr said it was my fibromyalgia or my M.E. Just awaiting the final tests. Good luck. You must research every condition you have and to see if it links in with lupus too. That’s what I did then went back to my Drs I am so glad I did. Also to get well you must radically change your diet in a bid to stay healthy. I wish you well. Elena

Krawlins in reply to Hidden

I do wonder about going privately but am worried about the costs piling up. Perhaps when I move next year (downsizing) I will be in a position to do this, thank you. When I Google my symptoms it always comes up with lupus.

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Hidden

I had these petechiae (non blanching) on tops of my feet and up my shins. I posted here about them with pictures a few months ago. healthunlocked.com/lupusuk/...

My rheum and dermatolgist felt they were some sort of small vessel Vasculitis, an extra glandular condition that commonly comes with Sjögren’s - which is my main disease so far.

They arrived while I was on antibiotics having had blood in my pee and pelvic pain. Although this wasn’t directly related to sun exposure I am fairly sure that the heat wave contributed to this as I don’t sweat properly and seem to dehydrate no matter how much fluid I’m drinking - another Sjögren’s thing.

My inflammatory markers, CRP and Plasma Viscocity (a more reliable version of ESR) are always raised to high as well and although my rheum blames Sjögren’s - she did acknowledge that they are too consistently high so could well be some underlying Vasculitis as well. I have splinter haemorrhages and my nail beds always feel tender despite no fungal issues.

Have you looked up small vessel Vasculitis? Sjögren’s and Lupus are less associated with raised CRP than Vasculitis and RA.

Krawlins in reply to Hidden

Thanks TT I remember now seeing your photos, I didn't have them then. I will look up small vessel vasculitis

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Hidden in reply to Krawlins

Glad to be useful. Maybe look up Sjögren’s too as 30% are seronegative, same as RA? Symptoms can be very similar to Lupus. Mine are.

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Krawlins in reply to Hidden

Just found this article arthritisresearchuk.org/art..., don't know if that will work but I am most worried about polyarteritis nodosa as definitely feel tenderness in bowel area and think this is similar to a hernia

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Hidden in reply to Krawlins

Your link hasn’t worked for me I’m afraid. But I’ve worried over the years that my doctors are missing stuff with me too as have had severe bowel and kidney problems over a lifetime and always high inflammation.

However I’m learning that for me, medications are often triggers and I think I’ve worked out fairly confidently that my mix is some form of EDS (can’t afford to pay what it would take for confirmation though), Sjögren’s (confirmed by lip biopsy and +ANA and some sort of small vessel Vasculitis (nodded at by rheum, derm and vascular doctor). Although lacking confirmation of the Vasculitis and EDS due to lack of local expertise, I do at least know I have Sjögren’s and Hashimoto’s and I also know that Sjögren’s is a multisystemic disease and under researched and very under diagnosed underestimated. So I guess this is enough of itself to blame the rest on for me.

Seronegativity is a tough cookie and we need to be tenacious and not be scared to flag it up to our doctors. If something fits well then you should maybe phone helpline of Vasculitis UK and ask where your nearest experts are. X

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Krawlins in reply to Hidden

Thank you Twitchy, I tried to get to drs today but all appts gone so have to wait till next week. I'm constantly bloated but all clear from a gynae point of view as had hysterectomy last year. Have confirmed diverticulae so assume that causes bloating. If I don't drink enough I get constipated and I have to drink a lot! I realise my mouth being dry could be the Amitriptyline. I recently asked to try quinine which I've been taking about a week to try and stop the fasiculations mainly in my left lower leg (due to previous slipped disc and emergency op). I also have very mobile/loose joints of shoulders, hips and ankles. I've excema on forehead/hairline and patch on one eyelid, both eyelids now very hooded as they say. I had to have a repeat blood test for thyroid as I was borderline under active. I think I should see a private dr maybe, they might give me more time. Best wishes to you. In a warped way I always look forward to your posts as find them interesting and humorous x

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Hidden in reply to Krawlins

I think you’re right to be sceptical about the likelihood of so many coincidences - ie of having many significant things wrong that are unrelated beyond affecting a very unlucky you.

And I must say that you sound like so many here - even those with a firm autoimmune diagnosis like me. In other words loads and loads acknowledged health problems - but no one joining up the dots - or should we say joining up the petechiae - to determine that there is an underlying autoimmune disease process at work.

So would paying for a private consultation help I wonder? Hard to say really. A large part of me (the Scottish part!) says that doctors who see patients privately, NHS or no, aren’t necessarily the really good guys. Also from long experience here on HU - that paying for clinical overview often proves to be a waste of money and emotional energy unless there is the strong chance of the doctor keeping you on as a patient.

I think it is rather different perhaps for conditions like Ehlers Danlos, which most general rheumatologists seem to ignore. And then I think the only way is to presume we have this condition or pay to see one of the few specialists in London who can diagnose it.

But then where does a private diagnosis of this kind actually get us? Well the importance of clarity for personal purposes alone shouldn’t be underestimated. But personally I’ve learnt that the only way to make progress from this point of clarity onwards is probably to find a good multidisciplinary team in the way that Barnclown has - mostly under one hospital but certainly under one health board/ health authority.

So if you do go down the private route then you should certainly choose a specialist with great care and at recommendation of others with similar symptoms/ history. Also you’d be well advised to see one close by enough that they can put you on their NHS clinic list if they can establish what is wrong and can help you.

I’ve seen two consultants privately - one a retired nhs endocrinologist several years ago - who was absolutely charming and proved a much needed thorn in my GP’s side at the time. He gave me great advice about moving on from pedantic doctors rather than hitting my head on brick walls. And it did get me where I had to get in one way which was that my dose of Levothyroxine needed to be increased and my GP was forced to refer me to an NHS endo in order for this to happen. But £275 was rather a lot to pay for this achievement I think?!

The other I saw was the Sjögren’s expert whom I travelled to Swindon to see this time last year. And then I only saw for personal interest really because I was already diagnosed and on Mycophenolate. I did find her input useful in a few direct ways and a few indirect ways so no regrets. But I saw both consultants privately at the recommendation of others here on HU or through charity helplines. I don’t think I’d risk paying again for consultant input because my NHS team are working harder for me now. And if this goes wrong then I’d probably decide to take a different approach entirely and aim for medical cannabis and LDN - neither currently available to me on the NHS.

Lastly thanks for kind words about my comments and posts. I think approaching life as one big Spike Milligan style nonsense poem works for me - but it’s nice to know that it helps others a little too! Xx

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Krawlins in reply to Hidden

Thank you so much for all this helpful information. I'll start with my GP next week if I still have these red spots, even if they've gone I do have a photo and can show him my excema as well. All week I've had a headache of sorts and the only time I had one for days was prior to getting Shingles and funnily enough I also woke up Saturday morning with the exact same pain where I had them before, over my hip and buttock/thigh, same awful tender nerve pain but no spots to itch. What a strange thing the body is and so many things that can go wrong, no wonder it is sometimes so difficult to pinpoint a problem.

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Hidden

Hi it cost me just under £400 for 2 visits privately at a Leeds clinic then he suggested going on the NHS as he did both. Am under his care and he has worked miracles. Even if you had to sell some items it’s what I had to do to raise the funds. Friends helped me do a few car boots to pay for treatment. Or you can see a gp privately in Leeds at spire methley Park for £90 for half an hour for a second opinion. Once you get somewhere privately then you can go back to the NHS. Get your medical records first. Read through everything at least twice highlighting results as I was told I was ok yet once I got my medical records I found lots of stuff. Was told I had gerd when I went to a dietician but my Drs told me tests came back negative and I have spondylitis which I was concerned about as they told me everything was fine as the results came back normal. You can’t always trust your dr to tell you. Keep a record of all symptoms in a diary. Take pictures of when you get rashes and get onto google 24/7. It was me that went back to the Drs and insisted it needed sorting out after much research on the internet. They rolled their eyes and thought here we go again she has another symptom. Sometimes we know more than them. But my hard work has paid off as now they also think I have lupus and are now more supportive. I wish you all the very best. Take care. Elena

Krawlins in reply to Hidden

Thank you for telling me the cost, I had no idea so that's really helpful. I've got copies of nearly all my recent MRIs save the last one, blood test results, x-rays etc but not my actual medical notes. Did you have to pay for that? I'm charged 30p for every page they print off for me but that's a small price to pay. I will see how my next appt goes.

Just shows how your inkling was always right when they tell you that they now think you have lupus, we do know our bodies don't we. I hope there is a good medication for you that helps you feel better and keeps flares at bay. Good wishes, Kay

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Krawlins

I'm off to work now, thanks so much for this info x

Hidden

Hi it will cost between £10 - £50. Get it all done on paper so you can highlight everything or get it on a disc and print out what you need. It’s amazing what Drs don’t tell you. I found out all sorts of conditions and ailments which I found on my notes and am just waiting to change Drs now. I wish you the best of luck as it sounds very much like you have lupus. Get a referral to a rheumatologist look them up on reviews. You deserve to be well and I can’t believe they are saying it’s not lupus when you have the symptoms. Remember if the drs ask just tell them you want the copies to file away with your other notes in case any future specialists need any information on your conditions. If they refuse tell them you have taken legal advice and under the freedom of information act you have been told you are entitled to copies of your records. Good luck. Elena

Careful1

This is true. I have found things my dr never told me as well.