Has anyone been to Bath Rheumatology?

[minxabroad]

Hi, has anyone here been to Bath hospital rheumatology for an assessment of EDs? I hope to soon be seeing someone there for an assessment and was wondering if anyone else had any experience of the doctors there?

[Jojo91]

No sorry I haven't. Good luck with the assessment. I'd like to hear how it goes as I live in the South West and have thought about trying for a referral there.

[minxabroad in reply to Jojo91]

Thank you. I received the letter today to call them for an appt. The lady I spoke to said she would put me on the waiting list which is up to 12 weeks (!!) for an appt. due to that length of waiting time, I would advise that if you are thinking of trying to go there, do so as soon as possible

[Jojo91 in reply to minxabroad]

Oh that wait must be disappointing for you, but at least you have got through the first hurdle of getting a referral. Sometimes NHS clinics state a maximum waiting time then it ends up being much sooner. Let's hope that's the case here.

[DISC]

Yes, I went to the Mineral Hosptal as they call it, for treatmnet for my EDS. Who is it that you are due to see?

[minxabroad in reply to DISC]

I don't have an appt yet. I was referred awhile ago. Yesterday I received a letter telling me to call for an appt and when I did the booking person said I now have to go on the waiting list. They didn't say who I would see. I suppose it is all a matter of luck and who becomes available first. Who did you see? How did you get on? Were you assessed there or had you already been assessed and diagnosed?

[DISC in reply to minxabroad]

I'd already been assesed but I saw Dr Jenkinson. They couldnt really help but offer physio which to be honest, made things worse.I opeted to have physio in Bristo, as it was closer. I saw Dr Jenkinson a few years later as I was always in so much pain and I actually wept in his office with desperation. He said he was sorry that he couldn't do anything but that he would support me any way he could. He was apologetic, but if I'm honest, I didn't find the hospital any use. Let me know how you get on, I wish you well.

[minxabroad in reply to DISC]

Thank you for letting me know. If you don't mind me asking, had you been actually given a confirmed diagnosis of EDs? Is it joint pain that you were (are) having the most problems with?

[DISC in reply to minxabroad]

Yes I had EDS diagnosis aswell as osteoporosis. And yes the pain in the joints was really problematic, and still is. I have other issues as well due to the EDS, like gastroparesis.

[minxabroad in reply to DISC]

I am hoping that the clinic in Bath will be able to tell me whether or not it is EDs that I have. That is the reason I am going. The Rheumatologists in my area do not have a particular knowledge of it. I hope that their assessment is very thorough and that I am not just wasting my time going there.

I really am sorry to hear of these issues you are having. I can imagine how disappointing it must have been to go there for help but leave with nothing. I hope you are at least getting help with the gastroparesis even if there is not much they can do for the joints.

[Ladyuponthelake]

Bath is quite close to me and I was thinking of going.... I've recently changed my mind as I want a diagnosis and referrals to the correct specialists that I know I require. So I'm calling London to see Dr. Hakim.

I wish you the best of luck! 🌻

[minxabroad in reply to Ladyuponthelake]

The reason I am going to Bath is because it was one of the few places listed on the EDs website (edhs.info) as a place to be referred to and was the nearest one on the list to me- so I would expect they have a specialist knowledge or they would not be on the website. I do hope that is the case otherwise I will have wasted so much time and effort. Have you already got an appt with Dr.Hakim?

[Ladyuponthelake in reply to minxabroad]

Yes, that's why I was going to go there as well. Let me know how you get on? 🌈🌞

[DISC in reply to minxabroad]

I hope you don;t waste your time either, as I felt it was a waste of time when I went as it is listed as a place to get specialist treatment. I found they were most interested in sports injuries really rather than EDS and the like.

[minxabroad in reply to DISC]

Now that would be a serious disappointment. There is a list of symptoms on that site, which my GP would never bother looking into (edhs.info/symptoms) but there is another page (edhs.info/about3) that I had hoped explained in more detail what the "specialists" would be interested in and looking for. DISC did they ask you about these things in detail? I suppose if you were already diagnosed they may not have bothered asking you these diagnostic questions...?

[DISC in reply to minxabroad]

As I said, they seemed generally more interested in sports injuries as the EDS specialist there also specialised in these, and Bath being a sporty city had many dealings with this. It seesm that there is no cure for EDS and no real treatment, so I didn't really find the appointmnets helpful. You may be different and get a new consultant as I went quite a few years back. I hope you do get some help and can give some better feedback on your visit. Please dont assume just by me that it will be a waste of time as it may be the opposite and I hope for your sake that it is!

[Ladyuponthelake in reply to minxabroad]

I just reread your reply to me and I aologies I hadn't answered your question. I haven't seen Dr. Hakim yet but my appointment is the same waiting time as Bath's Rheumatologist. So we'll have to compare notes after.

Again Good Luck and I hope you get the answers you are looking for. 🌻

[minxabroad in reply to Ladyuponthelake]

No problem at all. Best of luck with your appt too. I will be very interested to hear how it goes.