Can Anyone Please Help

[pixelpower]

2 years ago i was diagnosed with Marfan Syndrome, which in short is a lack of tissue in my body and effects my skeletal structure giving constant joint pain, can also effect organs such as heart, lungs, eyes, etc i have also got Gilberts Syndrome which leaves me feeling constantly tired and a common cold can turn into jaundice. I was working full time, but soon realised i couldnt no longer cope the pain was getting to much and on occasions was 'blacking out' i then went on job seekers allowance, on occassion i hurt so much i couldnt get out to 'sign on' meaning i got no money, etc i was advised to claim for incapacity benefit, which i made a claim for on 4th March i told that i must send in a sick note. After visiting the doctors (Again!) he point blank refused me one and said i have plenty of working life ahead of me yet, but only a desk job! My condition has worsened over time and will continue to do so as i get older (i am currently 28) sometimes i hurt to much to even go outside, even more so if its cold, etc. So basically what do i do now? Obviously my incapacity claim wont go ahead as i cant get a 'fit for work' note also i am not physically 'fit for work' to claim JSA as sometimes i cant even get to sign on! So what do i if i am not fit for work and not ill enough to be on 'sick' Marfan Syndrome can not be treated they can only treat the symptoms as they arise. The life expectancy of a marfam sufferer is 44, although the oldest person with it is currently 56, so there is hope but if i force my body to do things i will only get worse much more quickly than is necessary! Any advice or help would be most appreciated.

[BankFodder]

if you don't mind me saying so, writing the kind of unspaced block of text that you have done above, makes it very difficult for anybody to follow your story easily and that means that people are less likely to get involved and offer you the help that you want. Please will you use proper paragraph spacing. Break up the text a little and make it easier for us.

 

Your doctor seems to be extremely unsympathetic if the condition that you are referring to is a fully documented medical problem.

 

I suggest that you do two things. First of all I suggest that you go through the Internet and pull out everything you can about your medical condition, print it out, and send it to your doctor.

 

He won't be very pleased because these people sometimes don't like being contradicted by their patients.

 

This shouldn't worry you. There is nothing godly about doctors. They are completely capable of getting it wrong, of misunderstanding, or of just simply having a stupid attitude.

 

I think that you need to find another doctor as quickly as possible. This will be a hassle because it will mean registering with a new doctor. However it seems to me that if you have got this serious condition then you need to be treated by somebody who is prepared to recognise it and to treat it.

 

One way you might build to find an appropriate doctor would be to look on the Internet. There may be Internet groups for people especially with your condition and they may be able to advise. Have you checked to see if there is any charity or association of people with your condition? If so, contact them explain the problems. Tell them the name of your doctor so that they are warned and asked them for the name of somebody who understands the condition and who will treat you properly.

 

I'm not sure that I have any other advice to suggest at the moment but I hope that this is a start

[Nystagmite]

Another GP in the practise might be a bit more sympathetic.

[ariana10]

I really really really sympathise with you pixelpower!

 

I suffer from ME, fibromyalgia, and a few other nasties and am too in my 20's. The last 2 years of my life have been spent suffering, being ignored, being told one thing then another and generally being quite confused and annoyed by the nhs and the government.

 

You need and deserve financial help. I agree with the other replies, go and see another GP. Mine actually told me to speak to someone else to get a different perspective. Take in everything you can find about your illness, write lists of symptoms you experience, things you can no longer do etc to reinforce your situation. Also print off the NICE guidelines for your conditions and go through them with a fine tooth comb before you see your GP then ask why the hell he hasn't done what is expected of him! nice.org.uk

 

What also might be useful is to visit direct.gov.uk and print off the info that tells you who is eligible for ESA/DLA etc, tick off what applies to you and then go back to your GP.

 

It's not easy getting help with conditions like ours, it's an uphill slog and we don't have the energy to get through it alone so speak to anyone who will listen and give advice. And remember you can complain about your GP if his attitude warrants it and reminding him of that may help.

[Nystagmite]

ESA / DLA have nothing to do with diagnosis.

[walkinthepark]

My friends have recently changed doctors and it went very smoothly. You can make a complaint - they're not gods! Have you applied for DLA?

 

Perhaps, these might be able to give you advice as well and ask if there are any support groups in your area.

 

contactus@marfan-association.org.uk

 

Marfan Association UK

Rochester House

5 Aldershot Road

Fleet

Hampshire

GU51 3NG

Telephone Number +44 (0)1252 810472

Fax Number +44 (0)1252 810473

Answer Phone +44 (0)1252 617320

 

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