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Help pleaae

Hi am after some advice. I was diagnosed with M.E. about 3 years ago after having symptoms for many years which they kept putting down to anxiety, depression etc. I had an MRI and they found a lesion in my spine but said that was aging. I was 45. My symptoms have increased and are headaches, exhaustion, burning pain in legs and feet and hands, blurred vision intermittently, weakness in legs and arms, word confusion, stomach problems, pain in legs and hips and arms sometimes stabbing. It feels like I am walking barefoot on pebbles quite a lot.

I have been back to the doctors who have referred me back to the M.E clinic but I think it’s not M.E and haven’t done from the start. My family are seeing my deterioration and are as worried as me.

I have my appointment weds and don’t want to be fobbed off what can you recommend please am desperate.

Thank you.

Lir

hi

it’s a problem when you get a diagnosis and are passed on to a specialist in that illness.

you would need to see a general neuro if you want to dispute your diagnosis.

i don’t know how you would go about this though.

carole x

Thank you for your help x

When you say you have an appointment on Wednesday, do you mean with your GP? If so, I would take along with you a list of what symptoms you’ve had, include rough dates and whether these symptoms have completely resolved or whether there are any that are more constant. Explain the symptoms, especially the things that done seem to come under the usual ME umbrella.

Then ask your GP whether s/he thinks a referral to a neurologist would be a good idea as some of your symptoms seem to perhaps have a neurological cause rather than being caused by ME.

It can be more effective to lay out all the reasons why you should be referred to a neurologist and then ask what the GP thinks, rather than going in to the appointment and asking for the referral then explaining why. It makes the GP think they’ve been doing a responsible job, when actually you have just laid things out in a different order.

If the GP doesn’t want to refer you, but you still think it’s warranted, and you can afford a private appointment, try to get an initial appointment with a private neurologist. The best way to do this is to find an MS specialist neurologist who also has an NHS practice (check your local hospitals website). Get a private appointment. You may still have to be referred, but your GP can’t refuse. If that neurologist thinks that tests for MS or a different neurological diagnosis are needed, they can refer you back to their NHS practice for the tests (which are the most expensive part).

Good luck with it.

Sue