I had my follow up appointment with Rheumatology last week and boy am I disapointed! I got a Registrar who really didn't seem to know anything about my Scleroderma and other conditions. I was going to find out the results of my Pulminary Function Test and other tests, and he couldn't find my results!
I have been having a terrible time with breathing and that was the main reason they had me back, to see if the steroids were helping. I told him no they weren't and asked about some other problems I had recently started having, like frequent urination, I have to go every hour to hour and half like clock work, Im not getting any sleep at night and I can go nowhere as I have to go to the bathroom. It isnt a bladder infection as I had this checked by my GP. I was told well it is because I am a woman and these things just happen! I was shocked and more than a little angry. I asked about the pain I am having in my shins, knees and feet and he didn't have any idea why I would have them, probably just something to do with the Scleroderma. Usually after the Registrar sees me one of my Consultants come in to talk to me, but they weren't there this time.
It was a complete waste of my time, and with the breathing he just said he would send a letter to my GP when he found the results, hopefully I am still breathing by then! And I know already my Gp wont treat me for anything related to the Sceroderma, and if the test comes back ok, then I would like to know why I am having such a hard time breathing!
It is sooo frustrating, you wait three months to see someone as it is and when you get there you get some person on a rotation that knows nothing about the condition. I go to a Sclero specialitst because I want to see someone that knows what they are talking about. Sigh sorry for the vent just so angry at the moment, as I know even though I asked for another appointment it will be a good three months before I see anyone.
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uknlv
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Have you thought about putting all that in a letter and sending it to your consultant- and perhaps also copy it to your GP? I can totally understand your frustration- when I went through something similar I changed my consultant and am now receiving much better care.
Don't forget this is your life and you need the tools to make the most of it. The doctors are there to give you those tools.
Look up the Doctor Foster website to find another specialist in your area.
Oh I find this very disconcerting as I think I attend the same hospital, Chappel Allerton, as you. I attend rheumatology because I have an arihritic hip (I will need a relacement in time heaven forbid) and calicified ligaments in my right knee (which they can do nothing about). But for my Scleroderma I see a dermatologist, whom I have seen for the past 25? years. I don't always see the consultant, but on the whole have found the registrars very good, and as you say they generally check with the consultant before I leave. This was obviously a duff doc, not good for you at all.
I feel really frustrated on your behalf. It is such a long wait between consultations that you need them to be really productive when they do happen. Do you think it might help to speak to the rheumatology nurse (if your hospital has one). Maybe she/he might be able to give you your results and speed up the next appointment if need be. I can really sympathise as I had breathlessness during a recent flare and it was really frightening as well as extremely uncomfortable and debilitating. I hope you manage to resolve this soon. Good luck.
Kept thinking about your very disappointing consultation. Then I remembered an article in the RSA newsletter about Chapel All ( if that is where you go). It was in 2010 Vol 2 pages 4 & 5, do you still have a copy. Apart from singing the praises of the hospital, which you didn't experience, it also mentioned a monthly CTD/respiratory clinic run by Dr Beirne. Perhaps you should ask for an appointment in this clinic with your breathing problems? Best of luck.
Thanks for all the support and suggestions, I have left a message with the Nurse and am trying to get through to the Consultants secretary. I will see about getting referred to the respiratory consultant.
I am trying to do some fall cleaning and clear out and have to stop every 10 mins or so because it feels like I have run a marathon with my breathing. They need to do something!
I was sorry to hear the problems you are having at Chapel Allerton I went there last Thur for the first time and have to admit I said to my husband that there was a lot of docs and I was worried about seeing different one each time, but wasn't sure how appointments work there. Up till now I have been to Seacroft and always seen the same doc but I think my problems are too much for Seacroft to manage now. I hope you get seen soon.
Well I got a result, I spoke with Elizabeth the connective tissue helpline nurse and she is getting me a rush appointment with the Sclero doctor. As she was surprised that they didnt make an effort to get the results as that was the sole purpose of the appt. So will just wait to get the appt through the post.
Gillg, I will get the name of the woman I saw the time before, she is who I am going to see this time. I can't remember her name but she was very good with Sclero problems. And usually either Dr Buch, Dr Del Galdo or Prof Emery come in at the end of the appt to talk to you when you go. But I was told I can ask to see a specific doctor when you get your appt. As I said I will post her name and you can request that you see her, I am going to do this for any future appts.
This is the second time I had someone who didnt have a clue, and it is very frustrating and frankly a waste of our time. I understand the registrars need to learn but if you don't get the back up from the Consultant and they don't know what to do with your problems whats the point!
Thanks again for everyones kind comments and suggestions. Hopefully my breathing problems will be resolved soon!
Thanks for that it always helps to know what you can and can't do from people with experience. I was lucky enough to see Dr Del Galdo who was very good and made me feel I may be getting somewhere. Hope the breathing is improving
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What should I expect at the rheumatologists and is there any specific questions I should ask? 
Scleroderma in the bowel?
New to forum, Hi advice needed
Feeling like nobody cares?
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