Will this affect my ESA

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Will this affect my ESA

Postby Lemonie » Wed Apr 24, 2013 9:41 pm

I have been diagnosed today after spending 6 and a half years diagnosed with Psoriatic Arthritis and Sacroilitis. I may still have the sacrolilitis but not the arthritis. I have been on Incapacity but have recently had to go to tribunal to get ESA after they totally lied and awarded me no points. I have been placed in the work related group and my ESA is due to end in October.

I am worried about telling them about now having been diagnosed with Fibromyalgia. The symptoms haven't changed but the name has so will I have to attend another medical? Does anybody know how this will change?
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Re: Will this affect my ESA

Postby kenco1973 » Wed Apr 24, 2013 9:50 pm

you need to notify esa of change in diagnosis/circumstance or they could say u are making a false claim by not telling them you may need to reapply for esa under new medical evidence best to be safe than find out later that you need pay loads money back for not notifying a change
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Re: Will this affect my ESA

Postby heavenlycherubs » Wed Apr 24, 2013 9:54 pm

If anything this should go in your favour as Fibro has many symptoms which affect you & no 2 days are the same, the more you put the better the picture they get. I currently have just returned my questionnaire as i am on the incap change over & its been hell with the forms, not sure i'd handle the medical tho. gentle hugz
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Re: Will this affect my ESA

Postby anonymouse » Wed Apr 24, 2013 10:39 pm

I think it will depend on what exactly the Doctors appear to be saying now. Firstly how firm a diagnosis was Psoriatic Arthritis? Normally this would only be diagnosed with evidence from X-Ray's/MRI/CT scans of joints. The damage the Arthritis has done should be apparent on these images so were you diagnosed purely on symptoms or did they find it through images? This is important as if your diagnosis is now Fibromyalgia and not Arthritis then there should be no signs of joint damage or inflammation now. I hope this doesn't sound personal in any way as I don't intend it to be so but from your story it sounds (on the face of it) that your diagnosis then or your diagnosis now is seriously wrong.

When it comes to ESA its not 100% straightforward BUT I would interpret the legislation as you having a duty to disclose this, however is there is reasonable doubt about the diagnosis you may wish to seek a second opinion etc to have it confirmed as there must be a medical error along the way somewhere. If you were to do this you could regard this diagnosis as weak and that you are seeking clarification of it first. However you could, to be on the safe side, inform them of the circumstances as it is all down to the interpretation of a "change in circumstances." As I see it I do not believe the change of diagnosis should effect your benefits as, especially now ESA and DLA are specificly focused on what you can do and what you can't do in various areas such as "mobility." I'm guessing your health has not improved since your original claim nor has it got any worse, a change in how the condition effects you is probably of more importance than the diagnosis itself. However when you have a firm diagnosis that you believe in, you should inform them of it but I would enclose a copy of any reports and a covering letter making it super clear that this has not bought a change in your circumstances regarding what your are and are not capable of doing from a health standpoint.

Having said all this I also know how they operate and you informing them of this, even very very clearly in writing may actually trigger a review of your case. This would mean you filling in another ESA50 (in most cases) and another medical, you will then probably have similar treatment as last time where you get awarded 0 points and end up in appeal or tribunal about it. This is a pain, but I am not saying this WILL happen I am just basing this on experience of what I believe is most likely. There is a fair chance that they simply do nothing and this would save you a lot of hassle and I really hope this is the case for you. In my view there is no change in your circumstances with regards to what you can and can not do therefore there should be no change in the award.

I wish you all the luck with it I do, what the legislation means and what they interpret it to be is often vastly different. If your unsure about the diagnosis then make sure you get it sorted as that form of arthritis can produce all the Fibro Symptoms BUT also damage to your joints that should be visible. Oh and I forgot to ask if you have Psorasis of the skin and/or nails? Feel free to post more info if you feel that would help you and your welcome to PM if nessessary.

All the best health wise and with your benefits.
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Re: Will this affect my ESA

Postby Lemonie » Wed Apr 24, 2013 10:41 pm

Thanks for the replies. Hope I don't have to go through the whole process again as it was so stressful last time and then had to appeal so fingers crossed it's just a notification.
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Re: Will this affect my ESA

Postby FluppyPuffy » Wed Apr 24, 2013 10:59 pm

You could do with speaking to someone who knows the benefits system to give you some advice specific to your situation. Places like Citizens Advice have such advisers who can also help with anything paperwork/formwise that you might need to send in. Try Googling to see who is in your area, or contact your local council as they should have details of other organisations that might be able to help you.
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Re: Will this affect my ESA

Postby Lemonie » Wed Apr 24, 2013 11:05 pm

Hi anonymouse

Sorry I posted before your post showed up. I changed my Rheumatologist as I was really unhappy with the other doc. He diagnosed me and then I descended into the depths and he didn't care. He didn't think there was anything wrong with me and offered no treatment. He diagnosed very mild Psoriatic Arthritis based on the fact I had Psoriasis and had the pits in my nails which is a sign I am told. I was using a wheelchair on bad days! I paid privately for an MRI scan as was going mad and that showed Oesteoporosis and degenerative bone disease but he dismissed that as wrong.

My new Rheumtologist has said he doesn't think I have Psoriatic Arthritis but can't make a decision on the arthritis and sacroliltis until he has seen the MRI which he doesn't have yet. I was booked for the next available appointment which unfortunately was October. Thinking about what was said today, perhaps I should just add Fibromyalgia to the list and wait for conformation of the rest.
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Re: Will this affect my ESA

Postby anonymouse » Thu Apr 25, 2013 1:29 am

Hi Lemonie,

Thank for providing some more information, I have a lot clearer view of what has happened now. Your first Rheumatologist sounds awful. Firstly I believe the original diagnoses was very flawed indeed. Psoriasis of the skin and nails are not a sign of Psoriatic Arthritis at all, its just means you have Psoriasis in your nails and on your skin. Your chances of having Psoriatic Arthritis are greatly increased however they are three separate entities. Normally I would expect a good blood work-up and a comprehensive physical exam looking at your joints and looking for signs of inflammation. If inflammation is present its unlikely to be Fibromyalgia unless its a separate condition. There are over 100 different forms of arthritis for example. If you had any problems after the examination you should have at lease had the joints x-rayed.

Diagnosis of Fibromyalgia is mainly a diagnosis of exclusion I.e. everything else has been excluded then the American college of Rheumatology diagnostic criteria for Fibro is applied, inc tender points (however some are even dismissing tender points in diagnosis now.) It is also very hard to get a CT/MRI as the doctor has to be convinced there is a high chance of finding something first. I think that's based on money as a scan can be a great diagnostic tool and the risks, especially with an MRI are very low. It all comes down to how good the consultant is doesn't it.

If a radiologist has seen evidence of these things the doc should need a lot of evidence to discount it and it seems little evidence is present and the first consultant might not have even seen it! I am not surprised that the new consultant has taken the diagnosis back because of how it has been made. However he seems a bit quick to rule things out when he hasn't seen the MRI yet. Is he going of other images-tests? It might be that only the beginning signs of these things was present on MRI and a lot of people will have some degeneration. I think its would be helpful if they looked at the whole of the spine, I think its more likely to be in the bottom third out some rarer problems occur at the top and because they are rare the NHS don't have a diagnostic pathway to follow when it comes to some of these things. I think so far there has been a lot of guess work and no firm diagnosis as far as I can see.

This isn't great for you however there are a lot of people going through similar issues and how good your consultant is seems to be based on a cruel lottery just like DWP decision makers are and it is often dependent on where you live. If you can, do some research online, use accredited sites for medical information as I know there is some good information out there that you could read and find out what has and hasn't been done test wise by the consultant and what the possibilities are. Obviously don't go self diagnosing, or worrying about "what it could be" just use it as a tool to enable you to ask some better questions next time you have an appointment so you can be more reassured that the correct steps have been followed.

The advice about going to CAB for benefits advice is sound, again its a little lottery when it comes to determining if the advisor is any use or not but its worth a try, there are also other local agencies about to help too. There are some good websites out there for fibromyalgia health and benefits so do some googling, I run such a website but I'm prohibited from giving the address out by the rules on this forum which I'm not about to break but take it as assurance that they do exist.
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Re: Will this affect my ESA

Postby long time » Thu Apr 25, 2013 3:52 am

And the NHS strikes again.
You sound in a similar situation to me atm. I was given a lifetime diagnosis @15 yrs ago. Hospitalized on 3 occasions, treatment, medication etc but when requested my notes there was no record of being in hospital, let alone diagnosis ??
They put me on benefits for this reason !!!
So was I treated wrong ? Misdiagnosed ??
I'm not as bothered about the form atm, 6 yrs of hell there already but the diagnosing, treating changing their minds, denying, no records, it never happened etc. Don't know if you feel as strongly as me but I would like some answers. Some of them really think they are god and we are just irritating or playthings for their massive egos grrr

Fibro dx 10 yrs later, first to gp with symptoms @25 yrs ago.
Still barely had tests for anything
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Re: Will this affect my ESA

Postby whoami » Thu Apr 25, 2013 8:20 am

Lemonie,

It could be possible you have the other conditions as well as fibromyalgia.

You should request copies of any xray, MRI or scans to be put on a disk for you. This eliminates having extra exposure to radiation and you have the results to show any new Dr, or as evidence. We get copies of everything. It costs us nothing.

I think you should be upfront with any new conditions. It would be awful if you were perceived as hiding something and then be penalized for it later on.

Keep us up to date on how things progress please. It will be interesting to hear the outcome. Hopefully it will all be to your benefit.
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Re: Will this affect my ESA

Postby Lemonie » Thu Apr 25, 2013 9:20 am

I will definitely ask for copies of the tests on disc, that's a good idea. The MRI belongs to me and I want it back now. They asked if they could take it to scan it to put on my files and then the next time I went they didn't have it and I haven't been since.

To be honest the past is past and I want to move forwards and at least start appropriate treatment whatever that may be :-| Am going to contact ESA and say I have been diagnosed with Fibromyalgia but not remove the arthritis as that is the true until October 9th when I go back to see the rheumy.
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Re: Will this affect my ESA

Postby anonymouse » Thu Apr 25, 2013 9:38 am

Hi Lemonie,

Just read your new post and wish you the best of luck going forward and it is good to be on the safe side and let them know, hopefully they will understand it has not changed your abilities for day to day activities and it won't trigger a review. Also good luck for your appointment in October as well, please update us here if you can with how you get on. Ask for copies of everything, just as "long time" has shown things go missing all the time and you have paid for that MRI too!

I hope we have all been able to offer you some ideas and differing viewpoints on the situation for you. Once again all the best for the future.

Anonymouse x
Fibro, Chronic Pain, Insomnia, Psoriasis, Migraines, Light & Hyper Sensitivity & Joint Subluxation but apart from that I am perfectly healthy & battling for ESA & DLA. - Twitter: my_fibromyalgia - Facebook: myfibromyalgia
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