[fyre-faery]

Hello,

I'm new on here. I have been diagnosed with mild pataller sublaxation (Knees), all the surgeons I've seen say it shouls recover in 3-4 months with exercises, but I can't seem to do the exercises due to chronic inflammation. It has now been three years!
Anyone got a similar story?
And does anyone recommend a good and attentive Rheumotologist in London or Brighton UK?
I was considering Huw Beynon as he also works at the Wellington Knee Unit & my problems are mostly knee related (though my hands have gone a bit funny too) anyone ever heard of him?

Best Wishes
Felicity**):hehe:

 

[LolaLola]

Hello Felicity,

I am wondering if you have hypermobile joints. It is worth finding out as you could possibly be doing no good with the exercises.
I would suggest you look at the Website of The Hypermobility Syndrome Organisation just in case.

I am not trying to diagnose you, but maybe this would be a good start point.
x Lola

 

[fyre-faery]

Hi Lola

I am hyper-mobile, but my physio knows that....
Why do you mention it?

 

[Clare.T]

Welcome to the forum Felicity

Sorry, but do you think you have lupus so are you looking for a rheumatologist who specialises in lupus and similar connective tissue diseases?
I don't know about Brighton area but there are several in London, the best known at the NHS St Thomas' London Lupus Unit, or privately an even larger gathering of the great and the good at the London Lupus Centre.

When lupus is suspected the usual thing is to get the GP to run a full blood count, urine test and an ANA test. It's a good idea to have a look at the ACR Criteria list and the St Thomas' Criteria to see if there's anything in your health history or current symptoms that 'match'.

Hypermobility appears to be sometimes linked to autoimmune connective tissue diseases like lupus. There's an article about it pinned at the top of the Paediatrics Section. The inflammation referred to in talking of lupus is systemic inflammation caused by the immune system mistakenly attacking
the body's own protein ( cells) as if they were the disease bearing cells of bacteria or viruses.

There might not be any signs of joint inflammation either obvious or by imaging in joints affected by lupus, which also are not typically damaged.

All the best
Clare

 

[LolaLola]

Hello,
I was wondering if your hypermobility is enough of an issue that you need a Rheumy specialising in that. Clare is quite right some bloods to screen for Lupus would be a good idea. Some physio exercises and even some of the gentle sort that you do in Hydrotherapy or Aquacise classes definitely need caution with hypermobility. The reason I mention this is because a locum Physio once gave me exercises that resulted in bleeding all round my knee joints. I was a lot newer to all this then, and these days would know better, which is why I suggest a little accurate knowledge can be a good thing.
This is just based on my experiences and those of my family though.
x Lola

 

[fyre-faery]

Hi Clare,

Brilliant, I have looked at St Thomas (and their criteria) that was very helpful.

The most intense symptom I have been having is with the swollen knees, so I was looking for an all round rheumotologist, (no kidney damage and GP's ANA test seems fine) but interestingly I have several symptoms on the St Thomas Criteria as well! So surprising, especially the allergy to Septrin & sulphonomides…..

If I went to see a Lupus specialist would they also be testing me for other auto immune diseases? Or should I see just a general Rheum? Do you recommend a particular person at St Thomas? It's all a bit confusing!

I would really like to read your link between hypermobility and autoimmune diseases... but I can't find it. Can you forward an http address on?

Thank you so much, I really appreciate it,
Felicity**)

 

[fyre-faery]

Hi Lola,

I have trouble with my physio exercises so that may be worth looking into.
I'm not dramatically hypermobile, but I do have hyper-mobile knee caps & hip joints. I wonder if I am hypermobile enough for it to be important. Is there much a rheum specialising in that can do? Do they administer cortisone injections do you know?

It is the bizzare swelling and inflammation that seems to be the main problem at the moment I think, rather than the hypermobility. Even if I rest for 6 weeks it takes ages to go down, so will try the auto-immune line of investigation first, then the hypermobility one,
but much much thanks,

Felicity**)