Rheumatologist referral, appointments, reports etc

[cally6008]

deleted ... by user.

Modnote: further content removed due to violation of rules (public disputes).

[mami2four]

We have been having a nightmare getting my daughter to rheumy too. Our Gp told us they couldn't refer paed rheumy and orthopaedics had to refer her so we got sent there and they refused to refer her even though he agreed she may have HEDS 'But I wouldn't know anything about that' was his answer (isn't that why she needs to go to rheumy?)
So we go back to gp and he says he will write to orthopaedics again to ask him to refer but when i spoke to the receptionist about it a few weeks later it turns out the GP refered her (I thought they couldn't:think: ) but hospital have no record of it so it has to be resent

Its very annoying that as far as I know it's all to do with money as whoever refers you on has to pay for it I dread to think what their gonna say when I ask about going to GOSH lol

Katie

[cathyh]

Hi Hope you are all having a good day. Just thought I would share with you my first appointment with a rheumatologist. Well I dont feel it went very well at all. She felt how mobile/ flexible my joints were and said i was definitly hypermobile said she didnt think anything too bad was wrong like RA. Took some blood to rule some things out and booked me a physio appointment. I mentioned hypermobility syndrome but she didnt seem keen to even agree it existed she found it hard to understand how some people can be bendy without pain therefore although it seems real its a state of mind rather than a real physical problem. Not what I wanted to hear I wanted her to say YES it is painful and no wonder you struggle sometimes then give me a label I could then live with it and understand why I feel so crappy.
Does anyone have any advice for my next step?
Cath x

[jax]

Hi Cathy,

Sorry to hear you didn't have a very positive experience with your first rheumy appointment. It is completely
unacceptable for your pain to be described as a state of mind rather than a physical problem.
It is positive you've had some blood tests to rule out anything else and a referral to physio. However it may be that
you want to ask your gp to be referred to someone else for future care - either a hypermobility
specialist or another rheumy. I'd say you're perfectly in order to request such future care.

It is quite common for us peeps "who look so normal" to be underestimated with regards to
the levels of pain and fatigue we are carrying. You're not alone. However, it's not what
you need from a professional in whom you are trusting your future care.

Keep strong.

Jax
x

[elliejay]

Hi Cath
I wish I knew how to advise you.
I'm having a long term (4 year) problem with my rheumy department. I've been through two consultants and numerous registrars who all agree that I have HMS or just extra flexible (the ones that don't believe in HMS) but that it has nothing to do with my pain which must be due to some other form of arthritis.
They should all be made to go to an HMSA residential weekend !
Ellie

[juliea2]

Hi I saw a rehumatologist again 2 day. I have come out of the hospital feelin worse than when I went in. I have been crying all afternoon. The doctor said was there is nothing they can do and i should build up my muscle tone. I have cronic pain and sometimes i cannot move for pain. how can i work on muscle tone in pan. the pain is that bad the doctor has put me on morphine tablets which i dont really wanna take but if i dont i cannot move.

I am being sent back 2 physio again. Last time the physio told me there was nothing that they can do and 2 see rehumatology. I am tryin 2 go swimming a couple of times per week but the specialist told me that wasnt good enough. I feel like this is all my fault . He told me that i let the pin control my life and not me controlling the pain. Im just at a loss and feel that you people on here are the only ones who understand what I am feeling.

I just so lost and really down.

[mami2four]

I phoned the hospital today and was told Lili's referal to rheumy has been refused I don't know why yet as the letter hasn't reached our surgery. I've been in touch with our community health council who said to put everything in an email to them when I know the reasons and they will try and help.

This is only to see a rheumy, the referal was on the grounds that she has stretchy delicate skin, the blue around the eyes, a high palatte and dental crowding. But I have since realised that she's complaining of feeling dizzy A LOT even when she's laying in bed!?! Also, I'm not sure and I don't know if this is possible but I don't think all her pain/touch receptors(or whatever they are) are working properly, She is always very rough and heavy handed, her thumb has dislocated a few times with no pain and the bones in her arm seem to move apart at her wrist(does that make any sense?) and she just says it feels a bit weird. Even as a toddler you had to hold her hand really tightly as she kept thinking you were letting go and any scratches she gets she cries with the shock then is fine, it only really seems to hurt deep inside like with bruises or aches. Would any of these things strengthen a referal or would they come under something different again?

I am desperate to get her to GOSH, what hope have I got if I can't even get her to a local rheumy
I was told to try and get a copy of the musculoskeletal framework for Wales for the Welsh assembly as there is something in there that proves she can and should be refered to GOSH but am still waiting for it to arrive.

Katie

[Beth]

We (finally) have our appt with the ped. rheumatologist at Cincinnati Children's today. Trying not to get my hopes up too much but this appt is so important. I am just praying that we finally get to a dr that can give or help us get a diagnosis and refer us on to the specialist clinic. Also, am hoping that this dr can help us figure out what is going on with Em's foot since it is looking more and more likely that it is RSD.

At any rate, it will just be good to get to a dr who knows what EDS is and how to spell it!

Beth

[Itigo]

I saw the Rheumatologist a few weeks ago. He briefly examined me for bendiness (but none of the Beighton tests) and described me as 'a very flexible young lady' (had to giggle as I'm 37!). He says he can see no evidence of inflammatory disease or connective tissue disease (is that like SLE? Is HMS a disorder rather than disease?). I had to have blood taken and he's ordered 15 different things, some more random than others....I also have had a whole body bone scan with SPECT looking for degeneration and inflammation and blood flow. Took ages, and boy was I sore after from holding so many long poses! I don't get any of the results until the end of November so biding my time till then. He seemed overly preoccupied with the fact that Mum died from breast cancer and kept asking if I had lumps (and even checked my lymph nodes). Also honed in on my one miscarriage, even though I've had 2 pregnancies since then (although very tricky). He said because of my age and the many areas I have pain in etc. it was worth investigating more.

I am toying with the idea of taking Brad Tinkle's new book with me and asking him straight out if that could be the issue but I really get that he's the kind of Dr that will be mightily affronted that I even suggest something to him.I know about the assertive method but really panic about things like this! It is called Joint Hypermobility so I could say I got it because I am hypermobile and then thought certain things clicked?

Beth, how did you go in Cincinnati?

[Beth]

Hi Itigo,
Our appt went very well, thank you. We loved the dr we saw. She was really neat and friendly - one of the nicest drs I have ever met. She asked lots of questions and listened well. Her opinion is that Em probably has EDS due to hypermobile joints and soft skin. She is referring us to see Dr Tinkle at the EDS clinic. So, it went as well as it possibly could and we are very pleased.

Good luck with your test results - I hope you figure out a way to communicate with your dr, I know it isn't easy!

Beth

[cat117]

*Insert over the top happy noises here*

My evil specialist (who I hate more than anyone else in the world) has finally agreed with me that I might have a 'general joint condition' (didn't dare mention HMS, he wouldn't listen anyway) and has agreed to refer me to a rheumatologist!

I'm so excited, I might actually get to see someone who will understand and maybe even be able to help

[Willo]

I had my first (and last it would seem) rheumatologist appointment today and was finally diagnosed with Benign Hypermobility Syndrome (only took 15 years of being told I was making it all up and it's in my head!). The consultant is referring me to a geneticist, physiotherapist, occupational therapist and for a heart scan to check out the valves stating that due to family history I'm likely to have Ehlers-Danlos which he described as being a vascular type of HMS - I'm all confused with the definitions of each one so will have to do more reading on that.

I am over the moon that finally someone believes me and I didn't have to spend a short lifetime trying to convince him - whole appointment was less than 20 minutes!

As well as the onward referrals he's given me Amitryptyline to try and is going to write to my GP suggesting a pain management protocol and that if they're not happy with that to refer me to the pain clinic for further help which may be especially useful due to intollerances to a variety of other drugs.

If I were capable of doing a jig I'd be doing one right now! But I'll settle for a fleece blanket and a cup of tea in celebration that someone in the medical profession actually believes me and has some understanding of the difficulties caused.

The doctor said he didn't need to see me again and that the onward referrals would be the most use to me. He explained all about there being no cure but helping myself is the best thing i could do and was understanding when I said that I really wanted to help myself and know that one way of doing this is to lose weight but I've struggled to do this because I don't physically have the energy to do exercise.

He also stated he'd copy me in to the letter to the GP so I could use it to prod my GP in the right direction because the tone of my GP's letter was one of disbelief and that the appointment with him would be a waste of time - he commented he would rectify their belief for me.

It's a shame I don't need to see him any more because he was very nice

[meggy.nut]

Hi. I was diagnosed with BJHS in October 2010 (it is NOT benign!!). Sorry.
The diagnosis was by my GP and a rheumatologist who came to an appointment. The rheumy just looked at my joints. I scored a 7/9on the beighton (sp?) criteria so he said BJHS, but I might experience placenta previa during pregnancy. I also have the bumpy scars from surgery and gastric issues, but my skin isn't stretchy - all of which were not taken into account during the diagnosis. Since this is a connective tissue disorder, and he warned me of complications, shouldn't we (HMSers) be seen by a specialist of some sort?
I'm seeing my orthopedic doctor on Wednesday for a follow-up on my shoulder/ankle problems, and would like to know which specialist I should ask for. Thanks in advance for any advice.

[nemonie]

Hi Meggy.nut,

For HMS/EDS Rheumatology is the specialty for us, although you can also be seen by a geneticist. Dr Brad Tinkle is the main HMS/EDSspecialist in the US, he's a geneticist.
You need to be careful when seeing an orthopaedic doctor, as surgery is often their first treatment regime and it's generally not a good idea for HMS/EDS patients. Have a look at the various surgery threads on the boards for peoples experiences.

[meggy.nut]

Thanks nemonie.
I had shoulder surgery last year (before I was diagnosed HMS) to repair a stretched-out ligament. We tried physical therapy, but then my shoulder started subluxing multiple times a day for no apparent reason. So I had surgery. Now, I think I'd try PT longer.
I've read a lot of the boards, and can see why surgery is to be avoided in the future.
The rhuematolgist diagnosed me, and then said I don't fall under his care.
I can't get in to see my GP, so hopefully the ortho dept will refer me back to rheumatology and check out my ankle that's been bothering me/flopping about more than normal.