Help / Advice needed regarding diagnosis

[tigsx]

Im currently in a rock and a hard place....

I was told by a rheumy i was more than likely hms but has to do bloods etc to rule out a few things. They all came back clear so i stupidly assumed having had both brighton and beighton tests done with high scores she would confirm my diagnosis which she hasnt and seems reluctant to do. I have seen a second rheumy who is no longer in the area and she also believed me to be hms but said she wanted to wait on test results. I knew nothing about the condition untill they told me and i have pointed this out to them .....

My physio has said it seems likely to be HMS but again wont confirm it in writing.

Im really struggling with work at the moment but cant do or say anything as i dont have a diagnosis. My knee bent backwards the wrong way after and excessive amount of trips up and down the stairs twice the second time nearly causing my college to throw up My shoulder is subluxing and dislocating quite often and i have done my jaw twice in the last month. Someties my hip clicks and i get numbness in my toes.

I really cant afford a private appointment as im only barley working but dont qualify for any financial support (unless i get diagnosed)

Second opinions are limited. My surgeon said he new nothing about the condtion but didint think i was HMS and my knee surgeon didint want to get involved.

Any ideas were i can go from here ?

[trekster]

Complain to the hospital for refusing to diagnose you. You have a right to a 2nd opinion and to choose an alternative
rhemy/physio.

Could you ask your GP to chase up 'the confirmation in writing of HMS'? Explain they have verbally diagnosed you but
are refusing to put it in writing.

[tigsx]

My gp isnt really interested. I told him he could diagnose it and took in all the bump he needed but he didnt want to know. I contemplated moving doctors but i dont know if thats going to make it worse ? The Rheumys here all seem to be in a clic. I have seen 2 and both said the same wait for the test results. Nothing came back on them but neither wish to dignose me. I jus want to know either way whether it is or is not so i can get the right treatment.

[trekster]

Have you tried contacting them to ask what did the test results show and why wont they diagnose you with HMS?
You could ask to see a different gp in the same practice. i do that a lot at mine because mine is so busy.

[barkingmad]

Hi, I would personnally ask for a referral for a second opinion at UCLH. It can be done on the NHS

[cec57]

I wrote a letter to my rheumatologist listing the whole of my medical history, right from childhood and asked for it to be put in my notes. He was then able to see everything in a glance and make the connections. I was formally diagnosed at my next appointment. It can be hard remembering everything in the appointment and emotions can cloud judgement so by writing a basic time line can speed things up.

[AnnaH]

Time lines are a great idea, along with names and places if you can remember them, of people you've seen (stops them going over old ground). I did one for myself when I was diagnosed, and I recently did one for my mother, who has complex medical problems. With things like HMS, a long litany of accidents and problems tells a story no verbal, one-off interview can adequately convey.

[Flora]

time lines are really useful, as they allow doctors to see not only what happened, but how long it took to take place. I used to work with adults with learning disabilities in a residential home, and all contact with doctors etc and any health concern was written down in one place. It made things so much easier when going to the doctor, that I started a diary of my appointments etc. It helps me to remember what they said when I'm having a foggy day....
Flora

[nataliejane81]

Ooh a timeline is a really good idea, I hadn't thought of that! I'm having issues remembering specifics of some relatively recent things though, need to sit down & work it all out but brain fog is too true; needs to be he right moment....

Good luck getting your diagnosis. I'm so glad that my GP is really supportive (not got to see Rheumatologist yet) it must be so frustrating x

[tigsx]

thanks for the messages and support i have asked for a referal they cant see me till july i have started a symptom list and il trry and work out a time line

[trekster]

Could you try asking if you can make an appointment with the consultant of your choice?
That would be within a certain area where you live. Whichever has the shortest waiting list
pick it.