Rheumatologist referral, appointments, reports etc

[Smol]

Soooooo
I got my official dx today from the rheumy at York District Hospital. I was really grateful that she took me seriously and agreed with the physio that I do have HMS and raynauds along with my IBS. It's such a relief knowing I'm not a hyperchondriac, crazy or lazy. I'm on the list for a spinal stability course that should start early next year and they are leaving treatment to the pain clinic, which I heard today may well be closing and moving to Malton, which is apparently a VERY good one. I have some swiss ball exercises to keep me going in the mean time and I see my pain guy tomorrow to get booked in for the next SI/facet joint injections. There was discussion of and epidural instead as I'm getting sciatica and other nerve pain in both legs now (both arms too, which I'm going to insist they help me with pain management wise and not fob me off with "we only deal with one area at a time" malarkey) She also said I had some fibro trigger points, anyone know how that is dealt with? drugs/ therapy etc... She also said not to take the cervical fusion op that was offered, due to the poor healing and the damage to ligaments etc... so just hope it never gets so dire that I really need it.
Thanks for reading/listening I'm so very glad I found you guys and this site, it has helped me make sense of all my weird symptoms

[Superstottie]

Not sure if this is the best place - but it's late and my brain has gone to an even bigger mush than usual - so please move it mods if it shouldn't be here!! x

I was wondering if anyone can recommend a good Rheumy who sees kids (8 years old) in the north of England? We are in Cumbria, and I haven't managed to find a good adult one yet. My son, who was diagnosed as hypermobile 3 years ago, is showing some very worrying signs such as complaining that his thumb hurts, his feet and ankles hurt etc, and I looked at his thumb this evening and discovered that it bends sideways!! I would like to get him some help now, in the hope that he doesn't end up in the mess that I am. I could do with taking the whole family to be honest as all 5 of them are showing some signs - but Rufus is the most worrying at the moment, and it's breaking my heart to watch and not be able to do something - so really wanting to get him the best help I can. I don't mind if it's privately, I would pay anything to help him! Thanks! x

[trekster]

My rhematologist doesn't believe that EDS is related to HMS and feels my case isn't severe.

[Rosie]

Hi all

Superstottie, have a look at this thread about the clinic in Gatehead. I don't know if they see children but may be worth asking. Trekster, hae you tried printing out info for your rhuemy? There was a presentation at the last residential, and some o ther articles, that state very clearly why ES-H and HMS are now considered to be the same thing.

Rosie

[lauraawrr]

Hi all,

Got a rheumatologist appointment tomorrow, my mum being the star that she is works with the woman and she agreed to squeeze me into her clinic tomorrow so I'm not waiting any longer as ive still not heard anything back from orthapedics. (Boooo!) This is my first appointment with her but it would be great if anyone could help me so I know what to expect. Just wondering what will happen, what should i expect etc, I just really want to get somewhere as HMS has really started to affect my life quite significantly now.

Thank you

[trekster]

Going to see my rhemy on the 20th, hope he can up my dose of painkillers, they dont seem to work as well as they used to do.
Also going to ask if he can assess my mum.

[Mark88]

Hello all!

Sorry if this has already been covered I have tried reading through some posts but my brain is fried from the pain at the moment and it hurts for me to sit at the computer for too long.

How long does it normally take for the letter written by the consultant rheumatologist to reach the G.P after they have made their diagnosis. Rheumatologist I saw 2 weeks ago diagnosed me as having chronic fatigue syndrome as well as hypermobility in quite a few joints a that were exacerbating the pain. He said he was going to suggest gabapentin or pregablin for the chronic pain. I went into the doctors today and was told no letter had arrived from the hospital and it could take up to 8 weeks. I'm slightly confused how the letter could take 8 weeks to be written/sent to my G.P anyway. But i'm at the point where I just cant cope with the pain anymore and in my final year of university I cant really afford the NHS waiting game. I was just wondering how long it took other peoples G.P to get their consultants letter so I can know what to expect.

Thanks in advance everyone

[trekster]

Have you been prescribed the gabapentin/pregabalin? My rhemy prescribed mine.
I would ring the rhemy and explain the pain is unbearable and ask if he can write a prescription for you.
Then you can cash that at the hospital itself (different system to the GPs hospitals have their own
pharmacies).

[trekster]

My rhemy told me I have to go back to my GP to ask about laxatives for that problem and also for a stanmore referral.
He didn't up my doses of gaba or co codamol but suggested that I check im taking my full doses of painkillers and ask
my GP if I wish to increase the gaba.

He thinks that I should aim to be out of my wheelchair within the year. Considering how bad my ankles are tripping over
3 times per day im not sure how feasible that will be, I told him that stanmore would be able to help with that one.

Referred me to OT for those gloves that Sheppey mentioned on the stanmore thread.

Also recommended the NHS choices website and says im one of the most motivated patients hes had.
He's discharged me but mentioned that i could see him again if things got worse.

i did mention the hip pain i think but he didn't seem too bothered by it, has confirmed i can use my splints
for activities but not constantly. Also mentioned the physio didn't prescribe rotator cuff exercises but i wasn't
referred back there!

Not sure what to think of todays appointment?

[jolajo]

Hi

I have an appointment at the Rheumatology department to suss out whether or not I have HMS. What can I expect? It just says 'rheumatology general', so I have no idea.

I am also going for a bone density scan to check my problems aren't bone related. Anyone else had one of these?

Quite excited!

[lea1977]

hi all

i was wondering if anyone as seen a rehumatologist at leeds st james as i have an appointment in july and a little worried about the whole procedure as some doctors said yes it is HMS but the rehmatoligist may say no its just your back and then back to square one.

any advice would be great

leanne

[thalia]

Jolajo and lea, good luck with your rheumy appts. Not ahd mine, so no advice there, I'm afraid.

Jolajo, I have had a bone density scan before, and am due another soon, just waiting for the appointment. It's fairly straight-forward, much like having an x-ray done, though, if I remember correctly, you don't have to undress (though I could be misremembering, my memory isn't very reliable, lol. You just lie on this couch thing and they put the machine over the right spot and do the thing. No nastiness involved, and very quick.

I'm a bit excited! My GP referred em to rheumatology, though I'm not sure on his reasoning - we'd been discussing my fibromyalgia syndrome and current flare of pains at the time, and I'd thrown in the comment that it all wasn't helped by my hypermobility. He then asked when I was last seen by a rheumatologist (2003!) and said it might be an idea for me to be seen again.

Well, yesterday the 'choose and book' letter came through, with just my local hospital on (I'd asked for the referral to be made to them) so phoned to book (couldn't do it online). It turns out the rheumatologist I'm seeing is the one in the department that specialises in connective tissue disorders. I'm so excited because this means I might finally get a diagnosis. Got to wait until September, but I've waited this long, I'm sure another 3 months won't make any difference. Particularly not since I've also managed to move my follow-up appointment with the pain clinic (after an sij injection that's done nothing) from the beginning of September to the end of this month - weeeeee!!!!

[jolajo]

Hi!

I got on very well- doctors referring me to occupational health and podiatry which is great news. Results through for bone scan- all fine, so doctors now know it MUST be my joints not the bones!

Let me know how you all get on.

[Neogetz]

On wednesday I'm seeing a rhuematologist for the first time, not sure what should happen.
Are there anythings I should be sure to ask?

[Blaadyblah]

Hi Neo - descriptions of appointments with rheumatologists are detailed in this topic, you can search within it (see top left near the rules) for particular words you think might be helpful. You'll see that things can vary depending on area, the specialty/interest of that doctor/clinic and many other things.

As you'll see a rheumy will normally take a medical history including questions that may seem to have no relevance to you, then do an examination. They'll want details of medications and any other treatments you're having and will in all likelihood refer you on to physiotherapy and discharge you back to your GP, depending on the outcome of their examinations and assessment.