Been having problems this time round for over 16 months. Gp and Nuero thought MS but after a clean MRI they say its not, but can not give me another diagnosis . To be honest GP is supportive and thinks its early stage MS. Half expecting next time I go to Nuero he will discharge me, I had a brain and next MRI on an old machine with no contrast, Gp did talk of Annual MRI’s but not sure if this will happen. Can I be discharged with out a diagnosis? Did apply for DLA, got an expert to fill it in, but they wrote to consultants and guess they just said they had no diagnosis. I was turned down. I am not fit for work as I have left sided weakness, fatigue brain fog and vision problems Gp says time will tell Consultant says ring the clinic if anything mega happens! Worried if I get taken off the books, I might never get back on again
Hi Anon, sorry you are going through such a tough time.
It is of course very difficult if the MRI is clear. IF the neuro does discharge you, it doesn’t mean you won’t be able to get another referal in a year… esp as you have sympathetic GP. IF it is MS, lesions might be showing by then.
In terms of your current benefits, I wonder if for now it would be a good idea to get a dx of ME. I was first dx with ME and did go on Incapacity Benefit and got DLA with that dx.
So it might be worth seeing your GP and suggesting that you might have ME?
I know this might sound like madness when you have symptoms that suggest MS, but it’s a practical step to put you in position to claim benefits. Also, another advantage, if your GP refers you to ME specialist they might send you for another MRI (mine did & that was how I ended up with dx of MS).
Well worth thinking about.
For now, keep in mind that being discharged does not mean you can never have MRI again. Also might be worth doing a bit of internet research & see if there’s anywhere you could go that have a new MRI scanner. You could then ask GP to refer you there.
Hope this helps,
An MRI itself doesn’t diagnose or disprove MS. If you read other posts you will see that many people have very few or no lesions on their MRI scans. I would imagine they will choose to do further tests and consultations and find out what is wrong with you. DLA is not decided on by a diagnosis but physical and mental ability or lack thereof. I have guides on ESA and DLA application given to me by my union if you’d like me to send to you.
You appear to be having a tough time of it. Please appeal the DLA decision, if you have a union they should help you, and speak to your GP about your fears of being left undiagnosed, maybe he/She can help.
As Min says, you can appeal the DLA decision. DLA is not about capacity to work though - it is about mobility and care, and the extra costs associated with these. For example, even if someone has numerous, difficult symptoms, they may not be eligible for DLA mobility if they can walk reasonably well 4 or more days a week. If you can’t, then I would guess that your neuro wasn’t fully aware of this and has filled in the form the DWP sent him saying that your EDSS is low. (EDSS is a scoring system that is supposed to reflect levels of disability - walking is the most commonly used measure.) Unfortunately, your neuro’s word will have been taken over anyone else’s, even though most neuros won’t even remember who it is that they are writing about Next time you see the neuro, make sure your problems get properly written into your notes - that way, the neuro will know what to write, next time the DWP ask for his opinion! You could also ask him to write a letter detailing your current level of disability and supporting your claim. (I know some neuros are happy to do this.)
I recommend joining the benefitsandwork website btw - it’s full of excellent information and costs about £20 for the first year.
Re the MRI: it’s not actually the age of the scanner that’s important; it’s how it’s used. If you have a copy of your scans, you can tell me all the names and numbers and I can tell you if the scans should have shown up any lesions. At least then you will have an idea about whether or not the clear scan conclusion can be trusted. Also, contrast is only relevant if your symptoms started in the previous couple of months. It doesn’t show up inactive lesions at all.
As far as being discharged goes, you can simply ask the neuro to be kept on his list (maybe suggest seeing him again in 12 months), but if he’s not happy to do that, all you need to do is ask your GP to refer you again, if and when anything changes. A discharge doesn’t mean no further appointments.
But who knows - it may not even have entered the neuro’s head to discharge you. There may be more tests and more possibilities to consider.
Thanks for that. Is there a time scale to appeal? Friend has suggested I get a copy of Consultants letter. Do not really understand how DLA is worked out. I have a relative who has RRMS, she is a single mum, works 30 hours a week and is always out and about, cinema, dancing, meals, concerts,sports. She gets higher rate for both, but if you put us side by side and asked a stranger who was il, they would pick me! Did ask Gp about ME, she said not. I have got a Dx of Raynards and un deferential tissue disease, but his does not explain all my symptoms I have good and bad times
I can’t remember the time allowed to appeal, but it will be in your decision letter. There is a particular form to complete and you would need to provide evidence to support your claim if it’s to have a good chance (eg letters from your GP, neuro, etc). I wouldn’t recommend using other people as a guide to what DLA you should get - it’s mostly in how the form is filled in and disability can be invisible. Have a look at the benefitsandwork website, or take Min up on her offer. The website explains everything about both ESA and DLA, including the appeals process, although you have to join to get a lot of the info. Kx