Worthing area: can anyone recommend a good... - PMRGCAuk

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Worthing area

130396 profile image
40 Replies

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

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130396 profile image
130396
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40 Replies
valjo18 profile image
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 profile image
DorsetLadyPMRGCAuk volunteer

You have replies on previous post -

healthunlocked.com/pmrgcauk...

130396 profile image
130396 in reply toDorsetLady

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

PMRpro profile image
PMRproAmbassador in reply to130396

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.

130396 profile image
130396 in reply toPMRpro

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 profile image
piglette in reply to130396

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.

130396 profile image
130396 in reply topiglette

I want them to diagnose me

piglette profile image
piglette in reply to130396

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.

130396 profile image
130396 in reply topiglette

Yes I’ve got all my blood test results.

piglette profile image
piglette in reply to130396

What are your current doctors suggesting?

PMRpro profile image
PMRproAmbassador in reply to130396

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 profile image
DorsetLadyPMRGCAuk volunteer in reply to130396

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

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

130396 profile image
130396 in reply toDorsetLady

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

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to130396

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

130396 profile image
130396 in reply toDorsetLady

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 profile image
DorsetLadyPMRGCAuk volunteer in reply to130396

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

130396 profile image
130396 in reply toDorsetLady

What is PMRpro?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to130396

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

130396 profile image
130396 in reply toDorsetLady

Oh I see. She only suggested someone in Cherysey.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to130396

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..

130396 profile image
130396 in reply toDorsetLady

I did ask for Worthing or Chichester right at the start

Wish I’d never joined this group!!!!!

Kafkaontheshore profile image
Kafkaontheshore in reply to130396

I messaged you yesterday with two suggestions in your area!

130396 profile image
130396 in reply toKafkaontheshore

I have t had any messages

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to130396

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

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

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

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

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

130396 profile image
130396 in reply toDorsetLady

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

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to130396

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 profile image
PMRproAmbassador in reply to130396

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

PMRpro profile image
PMRproAmbassador in reply to130396

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 profile image
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?

130396 profile image
130396 in reply topiglette

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

130396 profile image
130396 in reply topiglette

What is GCA?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to130396

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

Magster54 profile image
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 info@pmrgca.org.uk.

130396 profile image
130396 in reply toMagster54

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

Zebedee44 profile image
Zebedee44 in reply to130396

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.

130396 profile image
130396 in reply toZebedee44

What have I put in my bio?

Zebedee44 profile image
Zebedee44 in reply to130396

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.

130396 profile image
130396 in reply toZebedee44

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

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