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Newbie here, not diagnosed

LdyalbLdyalb Posts: 85
edited 19. Mar 2012, 18:31 in Say Hello Archive
Hi all. I'm Ldyalb, I'm 23 and have suspected Psoriatic Arthritis.

I have diagnoses of Dyspraxia, Joint Hypermobility Syndrome, Fibromyalgia, Restless Legs Syndrome, Eczema and Rosacea.

I've had Fibro for almost 2 years now. Since last summer I've been noticing that my fingers often feel swollen in the mornings. I was on Diclofenac at the time and no-one else agreed they were swollen. Slowly over time they started to look a bit swollen.

I saw my 2nd Rheumy (for Fibro) in November and she told me I needed my fingers scanning if they still felt swollen in early December. My GP refused to do the scans although he did run the bloods she requested. My inflammation markers were in the highest range they can be before being out of the 'normal' range. I stopped taking the Diclofenac in Jan as I suffer from Acid Reflux and it was getting worse.

After this my joints became increasingly swollen and my little fingers middle joints became swollen and changed shape slightly. GP felt them and still refused a scan as he said my joints were too flexible to be arthritic. Bearing in mind I have HMS - of course my joints are mobile most of the time. They've very stiff in the morning for a few hours after waking up. Also stiff if I've not used them much for a few hours.

Both my parents have osteoarthritis, Mum also has Spondylosis in her spine. She was diagnosed with OA at 28 but she'd had symptoms since she was 24. I'm 24 in June. I also have an Uncle with Ankylosing Spondylitis, he's had it from a young age. My parents are both Hypermobile and I know HMS can increase people's risk of getting arthritis.

Shortly after my GP refused the scan I took the nail varnish off which I'd had on since Christmas. I was shocked to notice my nails were full of indentations (pitting) which I hadn't seen in anyone's nails before, let alone my own. I decided to try a different GP at my surgery, I had to wait 3 weeks to see him as he's the most popular one there. My Counsellor recommended him to me.

I showed him my nail pits and he agreed that my joints are swollen. He asked about Psoriasis and I said I don't have it, but do have Eczema. He examined my main patch of Eczema on my ankle which I've had about 8-10 years now. He said it might actually be Psoriasis and that he thinks my symptoms point to Psoriatic arthritis. He's referred me to Rheumy number 3. I have to wait aaaages for an appointment. Am 4 weeks into a 10 week wait. In London when I first got Fibro I only had to wait 3 weeks!

The pain is mainly in the bottom two finger joints but has started to spread to the joints nearest my nails. I'm also getting a lot of pain in my ankles and heels and in my toe joints, especially in my big toe joints nearest the nail.

I'm seeing my new GP tomorrow as my jaw is in agony, it hurts to talk, laugh and eat. I also have ear pains and tinnitus so I suspect TMJ. Or if I do have an inflammatory arthritis then perhaps it's spread to my jaw. I want to ask my GP to do some bloods and scans before I see the Rheumy as I've got such a long wait to see them. I'm concerned that by the time I get an appointment the new Rheumy will need to run the tests and then I'll have to wait months to see them again for the results and diagnosis. Not knowing what's wrong is driving me crazy :(


  • stickywicketstickywicket Posts: 25,998 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello ldyalb and welcome to the forum. You seem to have more than your fair share of problems. I hope you’ll find these forums helpful. I know I do.

    As you have unfortunately discovered, it can take a long time to get a diagnosis of any of the auto-immune types of arthritis. I hope you’ll have better luck with rheumatologist no3.

    You say you stopped taking diclofenac because of acid reflux. Were you prescribed a stomach protecting med with it – usually Lansoprazole or Omeprazole? These make a big difference. Also, you should always take NSAIDS with food to minimise stomach problems. There are others on the market which you may find you tolerate better than diclo. It’s just horses for courses.

    Please join in wherever you wish. We’re a friendly lot.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • frogmortonfrogmorton Posts: 26,327 ✭✭✭✭
    edited 30. Nov -1, 00:00
    Hi there ldyalb

    I am very pleased to meet you and welcome you to the forums.

    I hope you will find them as supportive as l have.

    It is horrible being undiagnosed especially when you suspect things are getting damaged (fingers you say have 'moved' slightly). :(

    I am undiagnosed really as ion my bloods are negative, but l am glad to say that at least my rheumatologist believes 'something' and l am being treated.

    The diclos gave me bad belly issues too....am now taking arcoxia which is gentler on the stomach together with lazoprazole to 'protect' the stomach.

    Please do join in LWA is a good place to start as you can post any queries you may have.


    Toni xxx

    Toni xxx
  • traluvietraluvie Posts: 2,579
    edited 30. Nov -1, 00:00
    Hi and welcome to the forum,

    Sounds like you have a fair bit going on at the monent
    It can take a while to find a diagnosis and start on the right meds, the good thing is that you are under the care of the doctors and the ball is kind of rolling even if it does seem only silightly.
    Feel free to ask any questions, we are all here to support eachother.
  • LdyalbLdyalb Posts: 85
    edited 30. Nov -1, 00:00
    Thanks guys. :)

    I was initially prescribed Omeprazole after 11 months on Diclofenac with no stomach protector. I saw a different GP to the one who prescribed it and she said I had Acid Reflux due to not having been prescribed the Diclofenac properly. I couldn't take the Omeprazole as it had a gelatine coating (I'm a Vegetarian) and I kept throwing it up as the thought of taking it made me feel sick. So my GP put me on Lansoprazole which dissolves in water which helped, but it does make me feel icky.

    Then I saw my 'wait and see' GP this autumn (I was forced to move back to my parents house as I need caring for so have switched surgeries) and he took me off the Lansoprazole as the Reflux had cleared up. This remained the case until January when I had the worst attack I'd ever had of it. I stopped taking the Diclofenac then. I'd been off it most days for several weeks and was managing ok with Tramadol. I figured if it could affect me when I'm hardly taking it then it was best not to take it at all. At this point I'd had it almost daily since September 2010.

    My new GP has taken me off the Diclofenac - he says it's a horrible drug and I should never have been given it. I don't get on well with NSAIDs and am allergic to Ibuprofen. A previous GP when I first got Fibro told me she'd never heard of someone being allergic to Ibuprofen (a GP at Uni told me I was as it gave me an irregular heartbeat) and she told me to take Ibuprofen. Her reasoning was that it was my boyfriend who noted my irregular heartbeat initially and he's not a Dr so it was fine. But as soon as I took it I got pains in my heart and palpitations so I never saw her again. Every other GP I've seen since has agreed I have an allergy to it.

    He's told me he can give me something else which begins with M and doesn't aggravate the stomach and heart as much. As I'm seeing him again tomorrow I'm going to discuss my options with him.

    I'm a bit nervous about going back on NSAIDs due to past history with them. I'm also a bit worried that when I see the Rheumy they won't be able to diagnose me with anything if my symptoms are masked by an anti inflam drug. My nail pits have almost grown out of my finger nails now and they'll be gone before I see the Rheumy. My last Rheumy discharged me in November but said I needed scans doing - these still haven't been done and it's April soon!

    My new GP said there's no point doing a scan as Psoriatic Arthritis is a clinical diagnosis and won't show up on scans. But that's only relevant if it IS PA, and not Rheumatoid or another type. I feel lost - I'd just got my head around all of the other stuff and now my body has thrown something else at me!
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, I'm DD and I too have PsA, but mostly without the P bit thanks to the sulphasalazine I take. My version of inflammatory arthritis went undiagnosed and untreated for five years, then was treated and called an inflammatory arthritis, then the P appeared and it was official! :) I have a history of eczema and asthma, so this is a new way for my body to have another go at me. :roll: (I say new, it's a total of fourteen years now. :roll: )

    From what you have said about your nails it sounds like classic PsA-type symptoms as it does classically begin in the small joints and nails are affected. How are your toe nails? I am fortunate in that mine began in my left knee and although 38 joints are now affected (including the hands and toes) my nails, somehow, remain fine. I have had scans in the past to show the extent of inflammation, and my inflammatory markers were always high (which helped). I wish you well for tomorrow, I hope he can help you and please post again on the LWA forum as more people look in on there. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • LdyalbLdyalb Posts: 85
    edited 30. Nov -1, 00:00
    Thanks DD. I did get a shock when I googled the nail problems and PsA came up. I'd never even bothered reading articles about PsA before as I don't have the P (to my knowledge). My first boyfriend's sister had very bad P, it was all over her and at one point after cutting a chunk of hair short to remove some chewing gum she decided that her scalp was so badly affected by the P that she may as well shave all her hair off so she could treat it. So I guess having seen her with quite bad P I just assumed that it was all like that.

    I do get very tiny pea sized patches of dry skin where white flakes appear. Usually on my upper arms and the lowest part of my stomach. I have a patch of dry skin on my ankle, it's not especially flakey, it's sort of dark and shiny. I have been on Diprobase for 3 years as I've always suffered badly from blisters and they got worse once I was in my 20s. The skin on my feet is the driest my GP said she'd ever seen. It's all hard and sometimes just walking a few steps, or sitting cross legged with my skin touching my feet hurts unless I slather on the Diprobase.

    But all of that could be Eczema which I've had since I was a baby. I've always had dry flakey skin (I can't use soap as it makes my skin come off, have to use handwash).

    I'm mainly seeing the Dr about my jaw tomorrow, it hurt when I ate a yoghurt earlier (fair enough it was a crunch corner but just those small choc digestive balls, pea sized so not much chewing). I'll tell him about the skin underneath my feet though so he can have a look.

    I know it is possible for PsA to affect people with only minor P, or before they get the P part. He also said that it might be enough that I appear to have P in my nails, even if the skin turns out to be Eczema as nails are made of the same substance as the skin, they're just harder. I'm sad about my nails, I've always had beautiful long hard nails. My pink bits are very pink, and the white bits very white - people at Uni thought I had a French Manicure. Luckily the pitting is just in one line on each nail and they're still attached to the bed. They're a little brittle compared to normal so I've cut them short until the pits have grown out. But it could be worse - I'm able to keep them clean and they're not painful - just the joints :(

    Just remembered - have some pics here that I showed someone on a Fibro forum I use who is also being investigated for PsA - her skin problems are worse than mine but she's seeing a Dermatologist first to check it's P before her Rheumy will diagnose.

  • LdyalbLdyalb Posts: 85
    edited 30. Nov -1, 00:00
    ps: toe nails are fine and pit free, they're a bit ridged but otherwise normal. And to be fair - my toe nails have been ridged for a while (big toes only).

    My toes and ankles have only recently become affected. Had pains in my big toe joints for a while, but only occasionally. It's now almost every day, it's been increasing in frequency since late last year. Before it would maybe be a few times a month. Because of this I'm keeping an eye on my toe nails in case they start to pit too. But so far so good :)
  • Colin1Colin1 Posts: 1,769
    edited 30. Nov -1, 00:00
    Hello L nice to meet you i see you have some good responce so ill leave it at that and just say Welcome to the forum and hope to see you about. Glad you found a understanding doctor with some comon sence.
  • LdyalbLdyalb Posts: 85
    edited 30. Nov -1, 00:00
    Thanks :)

    I saw him again today and I'm off to the dentist to fix my jaw (TMJ) caused by grinding teeth asap.

    He had another look at my hands and said something's definitely wrong. I've just taken my first new anti inflammatory (Meloxicam) so hoping my hands won't be as bad tomorrow morning :)

    One of my best friends is coming to stay with me next month (not seen her for almost two years) so I'm generally feeling happier. She's been very understanding wrt my health issues, more so than some other friends so hopefully when she's here I should know when I'm seeing the Rheumy, and have extra support :)
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