Worthing area

[Digger031145]

can anyone recommend a good rheumatologist in the Worthing or Chichester area please.

[valjo18]

I am unable to recommend a Rheumatologist personally, but I have received (private) treatment at Goring Hall Hospital, Goring, this year for other conditions, and cannot fault it. They do have a consultant Rheumatologist there who also treats NHS patients at Worthing and other hospitals in the area. Check their website for details. Afraid that's the best I can offer.

I hope you find a consultant soon. Take care.

[DorsetLady PMRGCAuk volunteer]

You have replies on previous post -

healthunlocked.com/pmrgcauk...

[Digger031145 in reply to DorsetLady]

Yes I’ve seen that reply but it’s not in my area

[PMRpro Ambassador in reply to Digger031145]

I have found Dr Sam and posted the info - he is in East Sussex. If you aren't prepared to go outside your immediate hospital area, your only source is to google private rheumatologists in that area and accept that whether they are good, bad or indifferent. You will find names for your nearest private hospital that offers rheumatology - some don't. Many good rheumies don't do any private work and on the NHS you are assigned to someone by the hospital - there is much less choice these days.

[Digger031145 in reply to PMRpro]

If I go private I am not going to waste my money on bad or indifferent rheumatologist.

I can’t travel outside of my immediate area as I have blood clots in my lungs which means I can’t walk any distance and have regions Pigmentosa so travelling is very difficult

[piglette in reply to Digger031145]

I have visited four rheumatologists over the years. I would not write home about any of them, although one was better than the others. What are you hoping to get from them? If you can get an NHS appointment, most rheumatologists are run of the mill, like most GPs. One of my rheumies was private and his main interest was money. If you want to go locally you probably will not have much of a choice numbers wise anyway. The majority are OK, there are a handful about the country that are good and again an awful lot who are mediocre. Most are pretty good if you want them for arthritis, but not so good on PMR or GCA.

[Digger031145 in reply to piglette]

I want them to diagnose me

[piglette in reply to Digger031145]

I don’t understand, you say you already have a rheumatologist and you are waiting for them to sort out your blood test results. Have they given you a copy? You are entitled to them. It may be worth getting hold of them.

[Digger031145 in reply to piglette]

Yes I’ve got all my blood test results.

[piglette in reply to Digger031145]

What are your current doctors suggesting?

[PMRpro Ambassador in reply to Digger031145]

Retinitis pigmentosa doesn't stop tangocharlie travelling. And most of us can't walk any distance, My point is that if you can't/won't travel. you have to look at the place you are willing to go to and see the choices available there since not all private hospitals cover rheumatology. Then you could post asking for opinions on specific names. We aren't a placement agency, we are just volunteer patients.

[DorsetLady PMRGCAuk volunteer in reply to Digger031145]

PMRpro has replied in that link - as she has said below.

Do you have PMR or GCA.. doesn’t say either on profile/bio?

[Digger031145 in reply to DorsetLady]

Don’t know. My dopey rheumatologist is still trying to work out my blood results

[DorsetLady PMRGCAuk volunteer in reply to Digger031145]

Do you have typical symptoms? Do you know what blood tests they are trying to work out?

[Digger031145 in reply to DorsetLady]

I need to know why I’m in so much oau in one side of my back & ribs.

I also heed to know what over range free light chains mean and also over range IgA indicates

[DorsetLady PMRGCAuk volunteer in reply to Digger031145]

Well one-sided doesn’t sound very PMR-ish. PMRpro should be able to help on other query.

Hope you can find a suitable Rheumy

[Digger031145 in reply to DorsetLady]

What is PMRpro?

[DorsetLady PMRGCAuk volunteer in reply to Digger031145]

Who -not what. The lady who has been helping you.,

[Digger031145 in reply to DorsetLady]

Oh I see. She only suggested someone in Cherysey.

[DorsetLady PMRGCAuk volunteer in reply to Digger031145]

No she didn’t - she also suggested the one in East Sussex - both of whom you promptly dismissed.

Much as we would like to, not sure we an help any further. Think you need to go back to GP and discuss with them..

[Digger031145 in reply to DorsetLady]

I did ask for Worthing or Chichester right at the start

Wish I’d never joined this group!!!!!

[Kafkaontheshore in reply to Digger031145]

I messaged you yesterday with two suggestions in your area!

[Digger031145 in reply to Kafkaontheshore]

I have t had any messages

[DorsetLady PMRGCAuk volunteer in reply to Digger031145]

Have a look in Chat - icon on top on screen with paper plane picture…

[PMRpro Ambassador in reply to DorsetLady]

It was on the thread, I saw it and so has she now.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

On the other one, yes I’ve seen it,, thought it meant a private message - my misunderstanding the wording.. 🤦🏻‍♀️

[Digger031145 in reply to DorsetLady]

I’ve just looked in the chat area and there’s nothing there from you

[DorsetLady PMRGCAuk volunteer in reply to Digger031145]

No there wouldn't be, I misread what Kafka..meant by "I messaged you.." to me that means a private message, but it actually meant a reply on your other thread. Sorry to send you on a wild goose chase.. 🤦‍♀️

[PMRpro Ambassador in reply to Digger031145]

I didn't suggest Rod Hughes, someone else did, I just provided his contact details for you.

[PMRpro Ambassador in reply to Digger031145]

I am PMRpro, a volunteer on the forum with some medical background. I have been trying to help you but you don't seem particularly grateful. Here are answers to the questions you have asked and opinions you have expressed.

This explains the free light chains test - it is done if you have other signs of a plasma cell disorder - you do, back and rib pain and probably other things:

medlineplus.gov/lab-tests/f...

High IgA is found in inflammatory diseases, some autoimmune disorders and plasma cell disorders.

I think you have to remember that evaluating medical tests is a very difficult and time consuming process? YOU may think your rheumy is dopey - others may think he is brilliant. You also asked for recommendations on the PMR/GCA forum - what you are describing doesn't sound much like either and you didn't answer our question. Not all rheumies are brilliant at all disorders that come under the rheumatology remit - and we recommend the ones that are good at PMR and GCA. Because you didn't say what your problems were.

I imagine your current doctor is drawing on other expert opinion - and you are in a queue with a lot of other people waiting for diagnoses. You are not the only person with medical problems with no easy answer. But on the basis of what you HAVE told us, I think there is probably a high likelihood of one of the disorders listed on the link above - BUT it COULD be kidney disease that is confusing the picture. And your "dopey" rheumy may be looking for past medical results to assess the possibility of that.

Bear in mind that if you go to a private hospital, then many of the test results will not be available to a private doctor - it is also NOT ethical for them to access the results on the NHS system for use in the private sphere. You may be asked to pay for the tests privately.

[piglette]

So far it seems you have had some quite detailed blood tests. Have the doctors suggested anything? You do not mention you have anything that seems close to PMR or GCA. Why do you think you may have one of them?

[Digger031145 in reply to piglette]

Well as my haematologist referred me to rheumatologist I assumed I had done thing belonging to that sort of specialist

[Digger031145 in reply to piglette]

What is GCA?

[DorsetLady PMRGCAuk volunteer in reply to Digger031145]

Giant Cell Arteritis… and what this forum is about..as well as PMR -Polymyalgia Rheumatica

[Magster54]

Hi, I can't recommend a rheumatologist, but i live in Worthing and recently joined a PMR/GCA support group in Worthing. They are a really friendy and informative group of people, who will be able to help you. You can find out more at [e-mail].

[Digger031145 in reply to Magster54]

Thank you. I haven’t yet been diagnosed properly. My rheumatologist is taking so long and I’m in a lot of pain

[Zebedee44 in reply to Digger031145]

Reading your bio and information you have given I doubt whether a rheumatologist is going to be able to help you with your abnormal blood results or diagnose your pain. You have multiple presentations which require different specialists.

I was also found to have strange blood proteins and have been referred to a haematologist. There were no light chains so my condition is called MGUS. You can look that up on Google. Your GP might refer you to a haematologist.

I also have a lot of pain in my right buttock and leg and have struggled for ten months seeing various professionals and doing a lot of waiting for the correct diagnosis. This year it has also been found that I have a brain tumour which requires a neurosurgeon and endocrinologist and gastritis which comes under gastroscopy.

I hope you find the advice and care that you need. This forum and the people responding to it have personal experience in Polymyalgia Rheumatica (PMR) and GCA (Giant cell arteritis) and cannot give medical advice about that or anything else. But they are a supportive and informed group, here for you if you are diagnosed with these nasty conditions. Wishing you the best of luck in finding what you are looking for.

[Digger031145 in reply to Zebedee44]

What have I put in my bio?

[Zebedee44 in reply to Digger031145]

If you click on your logo ( the AA badge) you can read it. It does not suggest PMR and shows all your posts over the years to other forums on HU. I’m sorry nothing has helped.

[Digger031145 in reply to Zebedee44]

I haven’t added PMR to my bio because it’s not yet confirmed until all my tests have been done.

My existing conditions have been longstanding and nothing to do with what I’ve got now