Some..... of my bloods are back

[Cellul]

Good Morning!

So I know this sounds ridiculous but I’m so pleased my bloods have come back abnormal!!! I’m still waiting on ANA, CCP and RF. But it would appear my PV is really high, and also I’m anemic - although this part surprises me as I take a daily vitamin and eat plenty of iron and folic rich foods! Very strange.

My GP has been great so far, I think he sees me as a little medical mystery due to the Parry Rombergs and Cold induced Urticaria, which is fine with me right now.

He is referring me to Rheumatology, and was very interested to hear that’s Rheumatoid Artertis is present in my mum, all her other 10 brothers and sisters and my maternal grandparents.

CRP came back at 7mg/l - which from what I can make out is normal. Although back in August it was only 2mg/l. So he sees that as a cause for concern.

I know it sounds morbid, but I can’t wait for my other Blood tests to turn up. I feel like I finally am on that road to being diagnosed and my symptoms treat. It’s hard graft being knackered and in pain all the time.

Please keep you fingers crossed!

So pleased I stumbled on this forum!

C

X

[Krawlins]

I can totally understand where you are coming from, best wishes with your other results, its a relief because its a kind of 'I told you so scenario' isn't it. We all know when there is something wrong. I feel just the same, feel for sure there is something with a name that I have, high CRP and ESR every time I have a blood test but rheumatologist ran his blood tests and ANA was negative so that was it, saw him once more and he didn't think any point in seeing me again, he only saw me the second time because of my high results, think they were in the 20s and 30s at the time and just as high when he repeated them. He looked at my hands and finger nails but never, ever examined me. I'd had an episode of hair thinning (came out in handfulls) every time I showered I got a really red face (said water induced urticaria) drs had said rosacea and its gone now anyway. For months I had itchy arms in bed but in retrospect that could have been dry skin which I have, seriously dry skin, mouth, eyes and down below (vaginal atrophy) I get a lot of pain but then the MRI he ordered showed my recurring slipped disc and DDD and osteoarthritis so he just put all my pain down to that, even though I feel I have widespread pain. I actually asked could I have polymyalgia or a CTD and he said I didn't have either and certainly not polymyalgia due to the way I walked into his office. Trouble is I look well so I couldn't convince him and I am not likely to as I don't see them any more.

[Cellul in reply to Krawlins]

How frustrating for you Krawlins! It seems to be finding a rheumy and GP who are on the same wave length. I hope you get to the bottom of everything soon!

I have had cold urticaria since I was 15 and at the same time was also diagnosed with PR syndrome. Although, I never really made the connection. It’s only been since May last year that the Cold urticaria has really kicked in fully and now I have to carry Epi pens due to anaphylaxis. I have always been prone to infections and illness very quickly, and it always seems to go on much longer than necessary.

My GP is convinced that I have some kind of auto immune disease so that’s a great start!!! I do hope we get the the bottom of our problems quickly! X

[Krawlins in reply to Cellul]

What is PR syndrome and high PV Cellul? Certainly sounds like your GP is good, best wishes x

[Cellul in reply to Krawlins]

PR Syndrome - Parry Rombergs Syndrome, and high PV is Plasma Viscosity - my doc explained that this is a marker for inflammation. This came back rather elevated x

[Krawlins]

My goodness I've done some research but never come across that before, I shall enlighten myself x

[Cellul in reply to Krawlins]

No one ever has. I’ve only ever met one other person with it in my lifetime and they were at the consultants office.

Stands to reason that a syndrome relating to atrophy of the head and face has some level of autoimmune issues.

Just pleased that my doctor believes this too and my bloods are finally telling their story!!!

[Lisalou19]

I think the hardest battle is waiting for some sort of test to come back showing signs of an illness. I have been around the block for years. Just waiting for my next flare to have all bloods repeated.

I went and see a doctor private during my last full on flare, as I am sick of being looked at like I’m mental all the time. This dr was so good he asked for copies of photos I have and requested my doctors to refer me back to his clinic under the nhs. Finally I feel someone is listening.

My dad has rheumatoid arthritis, one brother has thyroid disease and the the other is Celiac, not one doctor listened to me this during my search for a diagnosis!!!!! Fingers crossed, but I can understand when your living with something the relief at finally having a test that shows something!!!!!!!!

[Cellul in reply to Lisalou19]

I can imagine that it’s been a long and frustrating wait.

It’s funny that we all seem to know. But, need to the medical professions to listen properly.

I have always known since being 15 that my immune system has a mind of its own. I just never pushed for answers. I between episodes of being unwell I was too busy being happy about having a good time.

Wish I had pushed it more back then x

[Lisalou19 in reply to Cellul]

I started pushing forward last year, as couldn’t bare how rough I felt at times. Only that ended up with me being referred for a mental health assessment!!! I then suffered anxiety at the thought of doctors so suffered in silence

Now I’m pushing harder than ever as the longer it goes on the worse I am feeling

[Cellul in reply to Lisalou19]

Keep pushing Lisa! You’ll have a break through eventually!

Much love

[Lisalou19]

My dad has also been treated for years based on symptoms alone as all tests were NEGATIVE, he has just had a double hip replacement. His lucky he had a doctor who listened to him , otherwise he’d of ended up in the pile just like us trying to find the answers.