Joint pain and neuro referral

[Anabanana25]

Hi folks. My joint pain is getting worse, I've had pains in all joints in and off building for a year now. In the last week my knee is starting to feel a different type of pain. It is usually a sharp shooting pain, but this has changed to an injured constant pain (if that makes sense). Last time I saw a gp in person they said they can't do anything to help as I need to see the rheum and haematologist in feb. Not long to go now but it's hard being in pain. It feels pointless going back. Is this really all I can do? I am on clopidogrel and told not to take ibuprofen. Deep heat doesn't work for more than an hour, I'm in pain all day.

Next thing is, I keep having brief visual loss episodes and they're not sure if they're amaurosis fugax or retinal migraines. After the first one I was sent to stroke clinic which is where they tested for aps, after which I tested double positive twice 12 weeks apart. But no proof of clots. As they keep happening I think I've had a referral from the gp to a neurologist. I'm so so confused. Why the hell am I being sent to a neuro now? They can't figure out what's going on with me. Fed up of being in pain.

[veganworld]

I feel for you. I have ached a lot more the last two years. I find its worse in the winter when I am less active though. I really improve in the spring and summer. I take voltarol along with my warfarin if I go on holiday or have a special occasion. My GP allows one box of 28 voltarol (diclafenic) per year so I save them up for when I need to feel good. Its rotten as we should feel good all the time but at least it is a break. You need to watch your INR though.

Kaz

[MaryF Administrator]

Hi, make sure your referral is to a specialist off either our forum here, over on the right hand side under pinned posts, or from our charity website: ghic.world/ It is vital that your vitamin D shows a good score, plus also Folate, Ferritin, and B12 plus your Thyroid, and Thyroid testing in the UK is appalling which is why so many of us go through Blue Horizon or Medichecks and order our own, there is a post under pinned posts regarding this. It is no good being referred to a neurologist who is not off our list as they are usually dismissive of the condition and have no working understanding of it. MaryF

[Anabanana25]

Thanks all. I'm being seen in Exeter RDE , not near London at all. I think if I don't get anywhere with apts this month I will seek a specialist I think nearest is Plymouth. I am really going to try and be my own advocate.

I've asked for records of my blood tests edical history as I know I've had lots of blood done but no idea what when. Then I will know what tests I can ask for oe explore getting myself.

A question. I'm on clopidogrel as a blood thinner since the amaurosis fugax suspected, not warfarin as the haematologist wasn't happy to confirm I have aps. What will my inr mean when on this medication

? Anything or nothing?

[HollyHeski Administrator]

Hi, INR is only measured when taking warfarin. Warfarin, is an anticoagulant as well as heparin, clexane etc.

Clopidogrel as well as aspirin, is an anti platelet.

I can't tolerate warfarin, so I take clexane, aspirin and clopidogrel.

I'm hoping you see a specialist soon, as each of us react/need the right combination of treatment.

If you need any support please let me know? Weve spoken before.

[Anabanana25 in reply to HollyHeski]

Thanks, I will do. I have my appointments with haematology and rheumatology in 2 weeks now. I'm nervous though and worried they're not going to take me seriously. I'm just feeling worn out by this.

I asked about inr as I saw it written down in a blood test result list and wasn't sure why they tested it as it didn't seem relevant.

[Hidden]

Hello, would be happy to hear an update about your joint pains ... thanks