Feeling let down by doctors

[ciderpig122]

please dont go back to the same GP, you will get wound up and it will drag you down honestly, just ask for a different one and ifits the same move on to the next I promise, ive often gone and had murder with a doctor and the only person who suffered was me, i ddont think they do it on purpose but they genuinleydont know about EDS and dont like to be told what to do by patients

[GreenLantern]

Yeah I've noticed that, when my partner was on the phone to the GP earlier and he (my partner) told the GP that EDS and hyper mobility were the same thing the doctor said 'in your opinion'

[Rosie]

Hi all

green Lantern, I just want to point out tha EDS-H/EDS-3 are not the same as hypermobility, they are the same as hypermobility syndrome (HMS). Not sure that your GP wouls understnd the distinction though.

Rosie

[GreenLantern]

I don't know if I have this correct but

Hyper mobility is being double jointed

and Hyper mobility syndrome is being double jointed as well as having other things IE pain, dislocations, family history etc

is that correct?

[Rosie]

Hi again

Yes, basically that is the differnce. Have a look on the main website for diagnosing HMS/EDS-H, and there are a couple of threads on here as well if you use the search tool
Please can you use the 'Reply to' button rather than the 'Quote' one, I have PM'd you.

Rosie

[GreenLantern]

Sorry about using the quote button, it will not happen again. Thank you for the advice.

[Rosie]

Hi again

no problem, no need for the apology. Thanks for your understanding.
Please feel free to Pm me if you need any help finding threads, or anything else.

Rosie

[star gazer]

hiya, just a positive note both my son and I were awarded dla before we got our official diagnosis. DlA was granted on how the conditions that we have affect our daily lives, pain mobility etc. the woman I spoke to at the dwp who said I should claim for my son told me that an official diagnosis is not necessary,just medical info to back up the problems you are having ie: letters from the paediatrician which explained how poorly he is and his joint and heart problems. it was 6 months after his dla award that he was actually diagnosed by prof Grahame. same for me too, lots of consultants letters but at that point no eds diagnosis, I was formally diagnosed with EDS 4 months later, that new info was then added to my dla renewal.
good luck with everything, sound like your doc has got his wires crossed, lots of people are hypermobile (gymnasts ballet dancers etc) but it's the other things in the package that make up the syndrome such as skin problems joint pain tummy troubles to name only a few that make up the syndrome. In my letter from Prof Grahame he states "diagnosis is Marfans habitus and Ehlers-danlos type3 now also referred to as hypermobility syndrome"
My neuro consultants and orthpods all refer to it as Ehlers-danlos in my hospital notes (my orthopod used to work at stanmore so is well aware of eds and hms)
I was lucky as our g.p (three with eds in my family) knew about it and was almost too excited with our diagnosis and wanted to have a look at all the aspects we have!
Another source of reliable info which was overseen by prof Grahame is the stuff written in the dwp disability hand book, print it off and take it to your g.p
http://www.dwp.gov.uk/publications/spec ... -syndrome/
love star gazer

[trekster]

I would change GPs if you can or ask to speak to the practice manager. I spoke to the practice manager because my problem was with the receptionist'. I wanted them to know I am autistic so they can understand my anxiety over delays and other issues.

[GreenLantern]

Rosie, Thank you very much.

star gazer, so it is definitely worth putting the letter from my GP in with my appeal even though on the original claim form I put EDS Type 3 and on the letter the GP gave me he says 'suffers from what is termed a hypermobility syndrome'? I will be seeing a specialist but I'm not sure when yet.

Thank you for that link, I have saved it and will print it off.

[star gazer]

Yes if your g.p letter actually states hypermobility syndrome put it in.dont worry about having already put eds3 they are one and the same.
sg x

[GreenLantern]

Brilliant star gazer, thank you so much. Will the decision makers for DLA know that HMS and EDS 3 are the same thing?

[star gazer]

in theory they should do but I think it might be worth printing off the info in the link i posted It was as I said written By Prof Grahame renound rheumatologist and it is a dwp document which make reference to both eds and hms. if the link didnt work let me know.
sg

[GreenLantern]

The link worked fine thank you, so I should print that off and include that with my appeal letter?

[star gazer]

sorry I didnt reply last night, my computer crashed I would take the dwp doc with you to the cab meeting and if you do enclose it with your appeal put a note attached to it saying "to clarify that hms and eds H/3 are the same". The mistake I made when very first applying for dla was just to include printouts of info about various medical conditions that affect me which was not what they wanted, what they want to see is how you are affected by each thing, for example it may say on an info sheet that some people have gastric problems, the dwp will view it that not everyone will have this problem who has hms so if you have gastric problems you have to explain what they are and how it impacts on your life. In my case i have got gastric problems that cause sudden bouts of upset tummy which can occur with no warning so any trips out had to be pre planned around where the toilets were. An info leaflet may state that some people will have joint pain, you need to explain how joint pain affects you, is it severe, does it make doing things/activities difficult, do you need to take pain meds and do they control the pain, do the pain meds cause any side affects. If you do manage to do an activity what will the impact be, will you be in substantial pain, very tired etc.
the other main piece of advise I can give is to join a site called benefits and work. I will put the link in for you, as amember (they have an offer at the moment, under £20 for a year) you can down load guides to help you fill in dla forms, guides on how to appeal and much more, they also have a forum. I used these guides for my esa and dla awards after failing my first dla application, the giudes support you one question at a time explaining what you need to be thinking about with your answers, they make it easier to understand what the dla fom is actually asking, (I didnt put enough info in my form first time). the other thing to know is that you can re apply straight away with a new claim using the guides which might give you a better case rather than go to tribunal which can take a year. I re applied straight away and was awarded high rate mobility 8 weeks later, that was over a year ago and I have since had to renew, I had gone down hill quite a lot since then (complex problems) and now also have a care award too.
hope this helps. and here is the B&W link; http://www.benefitsandwork.co.uk/
best wishes
star gazer