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unsure of what to do now?

hiya everyone

i am a 30 yr old woman, who was diagnosed ms in 2002 then cfs in 2007, in 2011 told my ms was benign then told after further investigations i have progressive ms (no sure which type) but its all confusing me and i dont know which direction to turn i am symptomatic and have it thrown on regular basis and in the past that its all in my head but i was right to think its not cfs and that the fatigue crisis i had in 2007 was a relapse and not a new diagnosis but got fobbed off instead of receiving treatment and its all been left to fester and develop. i have accepted the diagnosis told to forget it to concentrate on the cfs when i should not of had to be forgetten now my physical and mental health are worse and its related to the hospitals responsibilty that my quality of life and purpose are frought because of responsibility. i am paying the ultimate price i feel but what can i do legally?

donnarebecca

Hi Donnarebecca,

I find it odd that anyone already diagnosed with MS was given a subsequent diagnosis of CFS (although the other way round is common), as debilitating fatigue is such a common and well-known symptom of MS.

I believe (don’t quote me, as my memory can be a bit dodgy) that in surveys, more than half of people with MS have rated it as their single biggest problem - i.e. more of a problem than specific, named disabilities - more of a problem than pain!

So I cannot really understand why someone with a confirmed MS diagnosis who presents with fatigue is not told: “This is very common with your disease”, rather than given a new diagnosis.

True, it should never be assumed that new problems always relate to an existing diagnosis, as that can lead to important warning signs of other conditions being missed. There should be a degree of open-mindedness about whether something is connected with the MS or not. But it does seem very odd that a CFS diagnosis would be pulled out of the hat, when the person is already known to have MS.

Although I have studied law, I am not practising, and cannot take it upon myself to advise you. I will simply say that I do not think you have a very strong case legally, and it would probably not be worth the time, money and stress it would undoubtedly cost you to try to pursue things that way. You feel there has been a misdiagnosis. However, even if your fatigue crisis of 2007 had been accepted without question as an MS relapse (not CFS) it is not clear you would have been eligible for treatment (one relapse in five years does not usually qualify), OR, even if you had received treatment, whether you would have been in a different position today. Available treatments have only limited effectiveness, and most people’s MS does progress over time, even with treatment. It’s not provable things would have been different today, and without proof, you have no case.

I think it would be much better to focus on what practical (not legal) steps you can take today to get clarity about what the problem actually is, and to get the help you need. I think the first port of call would be your GP, unless you see them as part of the problem, in which case the first step would be a change of GP.

I think there are several questions you need answers to:

  • What was your CFS diagnosis based on, and what made them so sure it wasn’t part of the MS you’d already been diagnosed with?
  • What type of MS do you have now? And,
  • What can be done about it?

Do be aware that there is very little in the way of treatment for progressive forms of MS - treatment of the disease itself that is. BUT individual symptoms are treatable, to help you maintain the best possible quality of life.

Tina

Thanks Tina

i will look at those practical steps and proceed with caution

It seems to me that your priority should be to look to the future and how to make sure that you get the care and support you need. That has to be the best way to direct your scarce resources of energy.

I think that Tina’s suggestions on the questions you need answered are spot-on, as is her suggestion that the GP is the place to start.

Good luck.

Alison