New Rheumatologist

[CecilyParsley]

Hi everyone, I hope that you are all doing as well as you can and surviving lockdown. I have had a letter today stating that I have a telephone appointment with a Dr Patrick D OBeirn. Has anyone in Wales had any dealings with him? This will be the third Rheumatologist in six months.

[CecilyParsley]

Thanks Lou, all I can find on him is that he used to work in Cardiff and the Vale and has contributed to a book on Lupus. I am fearful of being too hopeful sad as that may be xx

[misty14]

Just wishing you lots of luck Cecily for this appt. do hope it's the breakthru you need. Hope it's soon. Xx

[CecilyParsley in reply to misty14]

It is next week. I honestly do not expect much from it, I have such little faith in receiving any help these days but thank you so much xx

[misty14 in reply to CecilyParsley]

I understand that cecily but just maybe this one will be better!. The tide must turn eventually!. Look forward to your update and glad it's soon. Xx

[CecilyParsley in reply to misty14]

Thank you Misty. I am just worn down with it xx

[misty14 in reply to CecilyParsley]

I'm sure, it's a long , hard road to diagnosis so fingers tightly crossed this is 'the end'. Xx

[CecilyParsley in reply to misty14]

I am fed up of differing diagnoses to be honest. I have been diagnosed with Lupus, undiagnosed, diagnosed again only to be undiagnosed. This has gone on for eleven years now and it is disheartening and depressing xx

[misty14 in reply to CecilyParsley]

That's terrible cecily to be treated like that for such a long time!. Doesn't do anything does it for your emotional health never mind the physical!. Really hope this one will turn things round for you. Fingers tightly crossed. Xx

[CecilyParsley in reply to misty14]

Yes it has been a rough ride but worse the past. Year. First my Rheumy leaves so I get transferred . That Rheumy states my flares are not controlled so doubles my Hydroxychloroquine. I developed macular oedema but instead of being constructive he stated that he has met people like me before, always complaining of being sick but investigations show nothing. He said he was being straight and that there was nothing wrong with me except hysteria and Fibromyalgia?? I was horrified. Then three months later I was sent to another Rheumy at a different hospital who said he knew “ everything” about me, that I had uncontrolled Fibromyalgia .? I gave him lists of Consultants and diagnoses, including St Thomas’s. He said I had UCTD but it was only mild so I should think positive, lose weight and get on with my life. So you can understand why I am not enthusiastic about yet another one who has never even met me xx

[misty14 in reply to CecilyParsley]

It's just so awful what you've had to cope with cecily. I'm mild UCTD but I've developed all different symptoms over the years!. It's their attitude that is so wrong that you've been on the receiving end too much!. How have you got to this different Rheumy?. Just hope he is much more understanding and believes in you!. That is so important!. Xx

[CecilyParsley in reply to misty14]

I honestly do not know how I have got this Rheumy I do not know or what the consultation is about. If he has been recruited to fill the post of my old Rheumy then I think it makes sense that I eventually go to my old hospital rather than the two different hospitals I have been sent to since he left. I was diagnosed with Lupus in 2009, confirmed by two consultants. In 2011 a new Rheumy said it was not Lupus but Bechets , Fibro, CFS, Raynauds. Then I was diagnosed with Low Grade Lymphoma and told I had four years approximately to live. At that point I asked my GP to refer to St Thomas’s. They said I definitely had SLE, Query Bechets, Raynauds, Vit D deficiency, Hypothyroidism and APS. My Rheumy then was furious that I had got a second opinion and wrote to St Rhomas complaining. St Thomas’s then said I had UCTD ( same consultant) and discharged me. I refused to see anyone for two years but then got very unwell so was re referred to Rheumatology. He never once examined me in five years and wavered between me having Lupus or Bechets or both, plus Fibro.It really does get you down. I do not expect doctors to have a magic wand but some respect and compassion woukd not go amiss. I hope this next one will be better. I really do not think he can be any worse xx

[misty14 in reply to CecilyParsley]

What an awful story cecily, what you've been thru!. It's apalling when they can't give a definite diagnosis or can't decide which illness!. Doesn't do you any good at all!.

I did just have this thiught , as this is telephone he can't be prejudiced about your weight as he can't see you and doesn't know you. That coukd be a big plus!. Really do hope so, you certainly deserve it for all you've been thru. Xx

[CecilyParsley in reply to misty14]

I have no doubt that he will only read the last two consultations so read that I am an hysterical fat person who believes she has Lupus. I just hope that he, unlike the others, considers that having a strongly positive ANA, weakly positive DSDNA, low leucocytes, Pernicious Anaemia, Under active Thyroid, Raynauds, Dry eyes and mouth, Mouth ulcers, genital ulcers, rashes, joint pain, poor balance, brain fog, fatigue, migraine, muscle weakness, all add up to something being wrong with me . Thank you for your kindness. It is very much appreciated xx

[misty14 in reply to CecilyParsley]

He really shoukd do cecily with your symptoms and history!. I'm keeping fingers tightly crossed that this will be your breakthru!. Xx😊💕

[CecilyParsley in reply to misty14]

I do hope so but I will be shocked if it happens. I will keep you posted. Thank you misty xx

[KayHimm in reply to CecilyParsley]

Cecily - you have had an unbelievable diagnostic journey. I think the key thing is getting help. Since you have had diagnoses ranging from lupus to Bechets to UCTD, you might want to simply be open with this new rheumatologist about how difficult this has been and ask if he could maybe explain why your case has been so difficult to pin down. Hard to believe any doctor, particularly a rheumatologist who has to live with uncertainty in diagnosis,wouldn’t have compassion for you.

I tried to look this doctor up. The most I could find was that he has published two papers - no small thing - and contributed to a lupus handbook. I think you are safe to assume he knows his stuff.

Just hoping for a good consultation for you.

Xk

[CecilyParsley in reply to KayHimm]

Thank you Kay. I really hope that he is as good as I hear he is. My hubby walks our dogs and three people who have complaints in about my Rheumatologist last year , one waiting for a court date for medical negligence, told him that there is a new Doctor who is young but caring and interested. My hubby is a bit deaf and told me his name was Dr Bond? If he misheard the name and this is the new Rheumatologist people are raving about I would be so very grateful. I found the paper on Lupus and that he worked for Cardiff and the Vale so it is feasible that he has moved to my area If it is a positive conversation and I not just siphoned off to one of his team , it will hopefully be the start of a better more productive relationships with a Rheumatologist. I can but hope. Xx

[Oshgosh in reply to misty14]

I just hope that things become more positive for you. Are you taking some one with you ?

[CecilyParsley in reply to Oshgosh]

It is a telephone consultation.

[CecilyParsley]

Thank you so much xx

[Salzer]

I'm afraid I can't shed any light on him either but really hoping that it's 3rd time lucky for you CP. You have had such a time with doctors that I can completely understand why you aren't hopeful. I never go into an appointment expecting anything. But we will all be hopeful on your behalf and sometimes the right person does come through. Sending you all the best for it 🤞🤞x

[CecilyParsley in reply to Salzer]

Thank you so much. I have heard there is a new wonderful Rheumatologist at Nevill Hall Hospital but the name is different unless of course my hubby got it wrong. Three people who have put a complaint in about my last but one Rheumatologist ( one a medical negligence Suit) are all under him and singing his praises. I was so worried I would be kept under the last one I saw who made my skin crawl slapping my fat so the letter this morning was a real surprise xx

[CecilyParsley]

I know I was shocked Lou. The letter came out of the blue so I know nothing other than when I saw Mr touchy feely in February he said he would see me in three months? Maybe this is the man who has taken Dr L’s cases in which case I would automatically be transferred to him. I almost prefer a phone chat first so that I can gauge how he responds to me xxx

[Pmeh]

I'm waiting to find out who I got with Cardiff and vale hospital reading what uve said I'm not very hopeful you sound like you've had a bad time with it all I hope this ones better x

[CecilyParsley]

I have not had any from there so I hope that you get a Rheumatologist who listens actively and tries to help you. Xx