Know a good Rheumy?

[Mike1964]

Morning all

Am thinking I really need to see a Rheumy, have also sadly lost confidence in my local hospital following recent "Unfortunate" experiences.

I glean from reading other posts that it's possible to pay for a private consultation then as long as the Rheumy is linked into the NHS you can move across to them for follow up treatment assuming you are diagnosed with something unpleasant?

If so, I live in Eastbourne on the South coast, does anybody know of a Rheumy I could approach?

Thank you once more to everybody for your kind words of support following the fiasco of last week, boy does it help to know people understand and care.

[DorsetLady PMRGCAuk volunteer]

Don’t know if one personally- but sure you will get recommendations.

Good luck

[Mike1964 in reply to DorsetLady]

Thank you DorsetLady. I'm assuming you are from Dorset? a very beautiful County. I have spent many happy holidays there, can't quite believe it's been so long since I've visited.

[DorsetLady PMRGCAuk volunteer in reply to Mike1964]

Well I've lived in Dorset for the past 30 odd years, but only from just across the border in Hampshire originally.

Hubby was in Army so we have moved around a bit in between, but decided we wanted to live here after all our travels.

Yes it is beautiful, please come visiting soon!

[podo]

I can definitely recommend Rod Hughes in Chertsey (St Peters Hospital). You can see him either privately or NHS although private is best for early appointment. Bit far for you but worth it!

[Mike1964 in reply to podo]

To be honest Podo; I'm working full-time, attempting to care for my very ill wife, being a dad to my gorgeous 12 year old son who has special needs and doesn't really understand why his dad has gone from a bike rides and swimming every weekend dad to a shuffling tired old man. At this stage I would happily consider crawling over broken glass to speak to somebody who can listen, explain, advice and properly diagnose.

Thank you very much, will definitely add him to my "Hit list"

[trish29 in reply to Mike1964]

Hello Mike, it would be well worth a visit to Dr Hughes at Chertsey and he is a very good listener.Always patient and gives you time to explain everything. Best wishes trish29

[Mike1964 in reply to trish29]

Thank you Trish,

[Hidden]

Hi Mile1964, I just switched from a Private patient to anNHS patient and was able to keep Dr Kelsey Jordan. She works out the Royal County Susses Hospital (RSCH). She is "no nonsense," listens, explains, is very thorough and apparently likes doing procedure.. so if you have a Bakers Cyst LOOK OUT!!! Hahahahahahahahaha

[Mike1964 in reply to Hidden]

Thanks Mamici1

I don't even want to know what a Bakers Cyst is, but I'm guessing it's not pleasant

That's very interesting about Kelsey, does she have a real interest in PMR?

[Hidden in reply to Mike1964]

Seems to... she is the strong silent type, unless you ask questions. I had seen Dr Rod Hughes as a second opinion guy, and he seemed really pleased she was my local Rheumy. When I mentioned his name to her, she seemed quite happy too! Not sure what that means, but it made me comfortable.

[Mike1964 in reply to Hidden]

Excellent, thank you for that.

[Celtic PMRGCAuk volunteer in reply to Mike1964]

Mike, you asked whether the consultant Mamici sees at the RSCH has a real interest in PMR. I just wanted to add that the consultant Dr Rod Hughes who Podo and trish29 have recommended does have that real interest. He has been, and still is, involved in research into PMR and GCA. He was my second opinion consultant after my first one failed to diagnose me, and is also mentor to the PMRGCA support group I organise here in Surrey. A very kind, caring and knowledgeable rheumy. If you can manage the journey, he sees patients both privately (Sec: 01932 877831) and on the NHS (01932 722487). It sounds as though you have your hands full in a caring role for both your wife and son - not easy at any time, but especially not when you are battling with PMR. I wish you well with whoever you decide to see - a caring and knowledgeable consultant can really help smooth the path with PMR.

[Mike1964 in reply to Celtic]

Celtic, you absolute angel, thank you. I will make an appointment this week then hopefully find out soon if I am indeed totally deluded and a hypochondriac who spends too much time on Google. Although on that premise I must also be rather telepathic as I seem to have imagined a whole list of symptoms of a disease I'd never heard of! Oh no, am I now sounding bitter? Angry, disillusioned even rather naffed off is ok, I really don't want to do bitter

[Celtic PMRGCAuk volunteer in reply to Mike1964]

Mike, I'd be angry, too, after that experience you had at your local hospital. But no, try not to do "bitter" - unless it's ale!!!

[Mike1964 in reply to Celtic]

Lol, more good advice, it's a four pack of old speckled ferret for me tonight!

[Celtic PMRGCAuk volunteer in reply to Mike1964]

A FOUR pack - it sounds like you know how to live!!!

[Telian]

Probably too far for you but Professor Dasgupta, Southend University Hospital, is one I would certainly recommend.

Just reading your reply to podo, you've certainly got your hands full in the caring role Mike. I know what it is like to be ill and have a caring role, I care for my husband, but you have your son to care for also, may I say I think you are doing a wonderful job - I sense that without knowing anymore about you!

Just leaves wishing you all the very best and hope you get to see your chosen Rheumy very soon.

[Mike1964 in reply to Telian]

Thank you Telian. That's very sweet of you. Wishing you all the best in your many roles too. Have you heard of Care for the Carers? We have a good group locally but I believe they are also a national charity.

[Telian]

Many thanks Mike. I have actually, just registered with them - it's there in an emergency..

hope the government funding remains in situ!

[mega]

I'm way behind the curve for this but I presume it was the DGH who messed-up for you?

I have had several 'procedures' there and although facilities could not be described as cutting edge, I have no complaints.

They have a very good, competent Rheumy called some unpronounceable for English tongues (Pakistani?) who is very knowledgeable and interested in GCA/PMR. He is commonly referred to as Dr. Sam and is very pleasant as a consultant. I'm not sure if you need a referral from your GP or if you can just ring the hospital. I had a referral from my GP, who had no knowledge of this 'disease', (GCA) after 3 years of Pred. and my blood readings still very high.

Being on my own it has been (still is) far from easy for me but you are one of the 'always someone worse off'! who I bear in mind, constantly.

If you're not happy with your present situation it could well suit you to overcome your scruples and see Dr. Sam and at least it would cut out the expense and inconvenience of travelling.

I wish you and your family well.

[Mike1964 in reply to mega]

Hi Mega

Thank you, that is very fortuitous. I'm actually waiting now for an appointment to the DGH, something I wasn't really looking forward too but you have given me some hope, hopefully the unpronounceable Dr Sam it will be!

Kind regards

Mike

[mega in reply to Mike1964]

Very good luck Mike!

[PMRpro Ambassador in reply to Mike1964]

Dr Sam Panthakalam

There is an article about him in the Eastbourne Herald which I have read in the past but they now refuse to let me see it as I have an ad blocker! Just google him.