For the last 2 years I’ve been monitored by my GP and Hepatologiest for an unknown autoimmune disease. i’ve under gone CT scans, MRI, Fibro Scan Ultra Scans and nothing major was found other than existing medical conditions’ growth in lungs, cyst on both kidneys and an umbilical hernia. My gallbladder was removed in 2015
I last saw my liver consultant in January who decided to change my monthly blood tests after 18 months to quarterly as my LFT bloods had lowered for the first time since my last flare up in October which caused my consultant to request an urgent CT Scan and loads more blood test which came back normal.
A week after seeing my consultant in January I had another flare up causing my temperature-to raise between 103 and 105 from Friday to a Monday and since then I’ve not been feeling 100 per cent.
I’ve now realised that existing lumps and bumps on my fingers are getting worst which I’ve never really mentioned to my GP as I thought it was just signs of old age . I’m 68 and classed myself as fairly fit in many ways. Im a stone over weight and have lost 3 stone already due to healthy eating but I’m currently struggling with.
My concern is I’ve now noticed two new bumps on both of my hands just aboue my wrists, my centre finger I cannot straighten fully anymore, my fingers are swelling slightly like my fingers are becoming bumpy. My ankles have swelling at the rear and my left big toe tingles but feels numb.
Since the flare in January I’ve developed a weird cough and a niggle in my left lung, pains in joints when I wake up and feeling hot every morning with temperature is around 36.3 which then returns to normal then flares up and down throughout the day.
By accident yesterday I came across an article about rheumatoid arthritis being an autoimmune disease and based on the above I’m wondering whether after 2 years if this could be my unknown autoimmune disease now that I’ve noticed changes to my hands and pains in joints plus I’m still not feeling brilliant.
Can I ask is there a blood test for this disease? If not how does it get diagnosed?
Due to the lockdown I’ve not notified my GP of not feeling brilliant but I did notify my nursing specialist in March by email who said at time to delay my routine blood tests.
I’m now wondering whether I should make a general call to my GP which I’ve been avoiding as I’m not one of those patients who runs there with a basic cold if you get my drift .
Good grief that’s some medical history. I think you could be displaying some signs of RA. I get wrist swelling and hand swelling. The wrist was really bad and I had a very large synovial cyst drained was told this was caused by RA. Are your knuckles sore when you squeeze them ? This is physical exam that can determine active RA. Blood test are not always used to diagnose RA my bloods are generally good but I have active disease. Scans etc which you have had are more reliable. You talk about Your toes and the back of your heel hurting or bring numb I get this and have orthotics they have been some help but I still find myself hobbling and in pain quite a lot.
I’m not a doctor but would advice you to keep pushing for help. Start a diary collect photo evidence because sods law when you get to see someone it’s bound to of improved or disappeared. Good luck
in reply to
Hi J1707
Thank you so much for replying and advice about taking photo’s etc which I would never have thought of.
I’m sorry to read that your suffering with so much pain which must be awful. My joint pains come and go, some days my right hand and fingers are worse than other days. This. may sound madness but my fingers don’t feel so stiff if I’ve been cycling, the less exercise the stiffer my hands feel. Oh I forgot to mention that I’ve already had carpel tunnel in both hands which have been operated on.
Anyway I will give my GP a call next week and see what he advises.
Take care of yourself x
PS Knuckles tender or should I say very faint mild pain when I squeeze them.
in reply to
Yes report any pain and what caused the pain. Let us know how you get on. Exercise can help with stiffness
Hiya ShropshireLass, welcome. I must admit to feeling a little concerned given your symptoms & length of time they've been around, plus your GP & Hepatologist 'monitoring' you for an 'autoimmune condition' that they've not considered referring you on. Whilst blood tests aren't always conclusive there are two 'types' of RD (Rheumatoid Disease/Arthritis), seropositive & seronegative. Have you had a Rheumatoid Factor & ESR/CRP or Anti-CCP (not always done in primary care) at all? The RF & inflammation checks are the first tests taken if an inflammatory condition is suspected. If you have did they come back as 'normal'? You see seronegative is suspected when results are 'normal', even greater consideration for accompanying physical symptoms should be taken. This explains further nras.org.uk/seropositive-se...
How are you being monitored for the unknown autoimmune condition? They are aware of your symptoms I take it? That you've have two CT release ops would indicate you've had underlying inflammation a while, add in your other symptoms... bumps (poss rheumatoid nodules), centre finger (tendon contracture or tightening), general swelling plus heel (Achilles tendinitis)... all plus other symptoms you're experiencing could be RD related. I can't understand why the dots haven't been connected.
Do you have morning stiffness that lasts for an hour or more? Would you related your temp/joint pain symptoms as being flu-like? Tell you what, make a check list of all your symptoms & have a read through this nras.org.uk/what-is-ra- it may be easier to see a picture forming if you use a tick box type list.
Ultrasound can be more useful for checking inflammation than the big boys of the scan family so don't worry that nothing has been revealed there, along with your Specialist only concerning himself with/looking for problems relating to his specialty & the sonographers only recording what is requested.
I think you've enough going on to have to cope with possible/undiagnosed RD too so do please contact your GP. It's the fact they do consider you may have an autoimmune disease but they've not investigated as per guidelines that is concerning. But stick around, ask questions as you have them & we'll see how we can support you. Whatever's going on we'll try & help. 😊
Firstly thank you also for your in depth reply and link which I shall look at later today. To be honest I know totally nothing about this illness and never thought that there maybe a possible small connection into what's going on!
Secondly my GP is not aware of my lumps and bumps ! I have mentioned joint pains etc and have had numerous tests but I cannot say what they were at present.
I will however drag out some of my blood results and see if any refer to your questions above.
I do get inflammation but it's in my Esophagus which I have meds for.
I've had TB Hip as a child and was in hospital for almost 2 years and I think most was on traction and strapped to a bed including my neck! I'm.not sure if anything is connected from this either.
My consultant wont discharge me because she verbally confirmed that I do have an autoimmune disease and wants to do the liver biopsy when it flares up which are flu type symptoms plus itchy skin, nausea pains in joints etc etc.
My consultant and nursing specialist thought I had PBC Prmiary Bilary Cirrhosis but after 12 months of regular bloods back away from that idea. There now thinking possible Sarcoid which is an inflammation disease but again the bloods tests are coming back normal but consultant is still not ruling it out !
Don't worry Trish, why would you know anything about RD if it's never been discussed in a medical situation? I knew pitifully little in spite of my Nan having it. As with any condition there's lots of info & symptoms, you wouldn’t necessarily match them all. As a rule though RD affected joints are often bilateral but not always, & as I mentioned before can be seropositive (the more common type) or seronegative but many who are the latter can go undiagnosed for a long time as the RF isn't high & most 'normal' people can have a low RF result so it's dismissed. I can't express how important it is to be examined by a Specialist though because bloods only form part of the picture especially if considered normal something is causing the inflammation, it might not be RD but it needs investigation.
Just a brief update! I can only find one ERS blood test report dating back to July 2019 which was normal at a reading of 8 out of 0-15.
Over the last 18 months my Alkaline Phosphate has shot upto around 196 a few time along with my ALT at 127 plus GGT at around 278 which have been indicating Liver issue's but nothing found so far.
My CBC has raised only a tiny bit to 32 which is nothing really as thecrangebis between 27 - 31.
Oh well this is all for now as I cannot add any further information ..
Your ESR, whilst it can be high in those with unmedicated RD even mid range does indicate some inflammation but a repeat test along with CRP would be ordered (ESR is a measure for long term inflammation whereas CRP is current so would be more indicative of any inflammation in your body at the time of the test). But a lot can happen in 10 months as you know by the changes you've noted.
Your AlkPhos & ALT are obviously liver tests, but again could be relative so shouldn’t be ruled out of the bigger picture. They are included in our drug monitoring bloods, to check that the meds aren’t causing issues but also because RD itself can affect our vital organs.
Your CBC is slightly over the higher value range, but is that Complete Blood Count?
Repeat bloods will give a better idea but shouldn’t be relied upon wholly for referral to Rheumatology. Your GP should also take notice of your inflammation in various parts plus your lumps & bumps. He/she can’t examine as a Rheumy can but will be able to tell by gently palpating your tender joints if they're as they should be or not. You won't be wasting his or your time by making an appointment Tess.
It might be an idea to start a diary, noting things like the time after you rise in the morning that you feel you are less stiff, your temp variations throughout the day (although this may not be completely relative it's still worth noting). Also things like fatigue, when it hits & if you've been active/inactive at the time it hits, if it does. It will help to list everything you are aware of like your fingers, heel probs & lumps & any changes or additions as well as if they become more painful or inflamed. It will all give a history of how things may be changing. Are you aware if anyone else in your family has an autoimmune disease, even parent or grandparents? It's not always the case but it's thought it can be genetic, often missing a generation as it was with me.
Anything else that comes to mind just pop back on.
Re your question about any of my parents having any kind of autoimmune disease, this I cannot answer as I don’t know. Both parents died of cancer, mother 56 including my order brother at 45. My younger brother of 10 years has just been diagnosed with leukaemia in his glands and bones. My younger sister has a rare cancer too so hey ho.
I’m definitely contacting my GP tomorrow as my temperature has been spiking up and down all day, 38.3 and 38.5 C then drops to 36.2 ish. I don’t its Covid as this has been happening on and off since end of Jan.
Hello and welcome Shropshirelass. I would definitely go and see your GP. Make a note of all the things you’ve noticed, how long they last etc and take photos too. If you’ve got lumps and bumps appearing you really need to get them checked out. I hope you get a diagnosis soon, let us know how you get on x
Wow I'm blown away by the various responses and thank you and your members! I will definately make an appointment to speak with my GP who's straight forward and has been wonderful so far! I must say he's as confused as I am but has been sending me for nunerous tests etc. Camera up and down too!
I also have a history of water infections 2bladder stretch operations too...lol..
You know what I must sound like a total wreck to everyone but I'm far from it as I recently did a sky dive for BLT and QE Hospital which I raised £2537 which was fabulous.
I do have good weeks a bad ones which I guess is down to whatevers going on!-
You’re welcome, there’s lots of us here that feel like we are total wrecks so you should feel at home 😂 Well done on the sky dive, you’ll never get me jumping out of a plane, I’d be clinging to the door.
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