Undiagnosed and rare conditions
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I have no idea XD

AdventiumAdventium Member Posts: 31 Connected
Been ill for a long time. Pain, mostly. Spinal, chest, joints, all difficult to deal with.
It has been blamed on a lot of things, drinking (I don't drink...at all, never have), bad posture, Psychosomatic pain...
Today, my blood test came back showing elevated CRP. Not high high, but borderline high. I'm not sure what this means...but the docs seem to be taking me seriously now.
They are going to check me out, physically, as high Urea, so maybe gout, but no swelling, and no redness anywhere. Told the doc on the phone, and she decided that I probably don't have gout, and will need to see a rheumatologist.
I asked to see a rheumatologist around a year ago. Was totally ignored.

I feel vindicated. Finally the docs are listening, because I had a new doctor, and asked for a test for rheum screening :)

Fingers crossed eh?

Any questions, please, feel free to ask. Just posting for the conversation, and to get it out ^^

Replies

  • underdiagnosedunderdiagnosed Member Posts: 26 Courageous
    Hi sorry to hear you've been struggling to get someone to take your health seriously. I too have had similar problems over many years. The times I've been told its mental health, panic attacks (even though I've been given emergency oxygen for it, which means it can't be panic attacks), drug related (I don't even drink let alone take drugs). I even fainted in front of my GP and it still wasn't taken seriously. Fortunately when I moved about 10 years ago I found a better doctor's surgery who are supportive, I can still experience problems with certain doctors and hospital consultants and still don't have answers to many of my symptoms. Now I need a wheelchair and some professionals still can't see why. So my point is you're not alone with this type of problem. Also in spite of this other people are very supportive and kind and generous. I'm glad you've found a better GP, hope they figure out what's wrong soon and are able to help you. Don't give up and don't let it get you down
  • AdventiumAdventium Member Posts: 31 Connected
    Username checks out.

    Thanks very much for your reply! It means a lot to know it's not just me.
    :)
  • AdventiumAdventium Member Posts: 31 Connected
    Hi sorry to hear you've been struggling to get someone to take your health seriously. I too have had similar problems over many years. The times I've been told its mental health, panic attacks (even though I've been given emergency oxygen for it, which means it can't be panic attacks), drug related (I don't even drink let alone take drugs). I even fainted in front of my GP and it still wasn't taken seriously. Fortunately when I moved about 10 years ago I found a better doctor's surgery who are supportive, I can still experience problems with certain doctors and hospital consultants and still don't have answers to many of my symptoms. Now I need a wheelchair and some professionals still can't see why. So my point is you're not alone with this type of problem. Also in spite of this other people are very supportive and kind and generous. I'm glad you've found a better GP, hope they figure out what's wrong soon and are able to help you. Don't give up and don't let it get you down
    You say you need a wheelchair? May I ask about that? 
    My situation is that, I can walk, with a cane. But after 5 mins or so of slow walking, I have a lot of pain in my legs and back. Indoors isn't as much of a problem, sofa is comfortable enough (Not that it helps a whole deal with pain) but it's something. But outdoors, I'm starting to feel like it may be needed. My issues with pain are getting worse and not easing up, even with painkillers, so, trying to figure out if I should look into wheelchairs.
    Do you have any advice, and any info about support for wheelchairs, or how I may be able to get a hold of one? Even if just to try and see if it helps.

    Thanks,
    Adventium
  • katienewmedltdkatienewmedltd Member Posts: 6 Listener
    Good Afternoon Aventium, have you thought about looking into a PEMF device. This is completely pain free and could offer you significant benefits to help you with your pain?
    Katie
  • AdventiumAdventium Member Posts: 31 Connected
    I shall look into it, thankyou!
  • katienewmedltdkatienewmedltd Member Posts: 6 Listener
    Have a look on New Med Ltd 
  • AdventiumAdventium Member Posts: 31 Connected
    Katie. Sorry but I don't believe that would have any effect on my health, and would just equate to me wasting money on pseudoscience. I'd rather keep to proven medicine, with real and accurate test results. The type most of us need, rather than false claims, and fake cures. 

    I noticed you have had content removed for advertising...Do you get a kickback or something? And did you think this was a good idea?
  • underdiagnosedunderdiagnosed Member Posts: 26 Courageous
    Hi adventium,
    yes of course you may ask. I am normally ok to walk round my flat although sometimes I can be wobbly and I often get very dizzy, esp. if I turn/sidestep/spin etc. What I can't manage is distance. The more I attempt the more I struggle, I often drag my left leg, I may appear drunk. If I try to push through it I can trigger more serious symptoms including breathlessness, cardiac and neurological symptoms which can debilitate me further for weeks/months and sometimes I may never fully recover from them. 
    A friend found me my 1st wheelchair on a local(ish) sell and seek, it was old but comfortable and it was also free. I have recently bought a lighter weight chair as my parents in particular struggled with the weight of it. I got it from my nearest mobility shop, it was about £400. They came out to my home with a few chairs for me to try. The handles of most if not all wheelchairs will fold so you can fit it in a smallish car boot. Some chairs are self propel, others are solely for users to be pushed by someone else. Some have breaks on the handles which are useful if someone is pushing you downhill. You can buy detachable power packs which make it easier for the person pushing or self propelling. You will still need to push a bit if going up a steep hill, but not as much as you would without one. You can expect to pay about £500 for one. I don't know much about power chairs, I think they can be a lot heavier, harder to transport and more expensive. You may be entitled to a VAT exemption. 
    Another option if you are able is a mobility scooter, new ones cost anything from £2/300 up to silly money, you may be able to find one second hand privately or from a specialist store. I used to use one but I become exhausted too quickly to use it now. You can get ones which fold or come apart so you can fit them in a car. The on road scooters are much bigger, heavier and more expensive.
    Although you can buy wheelchairs online, I would advise that you try before you buy to make sure its comfortable (some aren't) and suitable for your needs. I would also advise that you buy a cushion for your comfort. They are inexpensive.
    Hope this helps.
  • AdventiumAdventium Member Posts: 31 Connected
    That was a lot of useful information! Thanks so much!
    I have an appointment with GP tomorrow, so will ask about it there, wether my issues warrant a wheelchair. Personally, I'd say they do, but never been in this situation before, and feel I need to tread carefully. 
    I've looked online, and there are a few in my small price range, that won't be an issue to get. But I have no idea if I'd fit in them, or how comfortable they'd be, so...asking GP is probably the best step :)

    Thanks very much!
  • underdiagnosedunderdiagnosed Member Posts: 26 Courageous
    You're most welcome. I just got a letter this morning from my nearest mobility store saying they can do non contact deliveries etc if required given the coronavirus situation. It might be worth seeing if there are any local charities who can help, or if you get PIP/DLA if they can loan you some money to help pay for equipment
  • janer1967janer1967 Community champion Posts: 7,200 Disability Gamechanger
    Hello and welcome, Have you contacted wheelchair services (you may need a referral Im not sure) they will complete a wheelchair assessment and provide a chair for you or if eligible issue a wheelchair voucher. You can find details on the internet
  • AdventiumAdventium Member Posts: 31 Connected
    Thankyou both for the information. GP tells me I have to wait to talk to a physiotherapist to sort this out. If they think it's needed. So, I guess thats the plan.
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