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Damn it I'm confused!

Hi is there anybody out there that can give me some sensible advice as I’m really fed up! My tale starts way back in 1991 when I was 25. I had just had my second child and started to develop strange vertigo like symptoms and chronic cluster migraines. Initially I was diagnosed with viral vertigo and given antibiotics, but the symptoms just kept recurring. I eventually got referred to a Neurologist but it took 2 years by which time of course I was fine! For a few years I just ignored the dizzy spells and blurred vision but in 1998 I had a bout of symptoms that I couldn’t ignore and was diagnosed with Optic Neuritis. At this point I asked for a private consultation with a Neurologist as I didn’t want to wait a further 2 years. The immediate diagnosis was probable MS’. I then had a lumbar puncture which indicated MS and an MRI Scan which ruled it out! My Neurologist told me he believed I had Benign Sensory MS as I appeared to always recover fully. For years I accepted it was MS and did my best to ignore it whilst fighting the symptoms passively. I had alln the well documented symptoms like visual problems, impaired colour vision, vertigo, balance problems, falling over and bumping into things, chronic tiredness, pins and needles, numbness, Babinsky sign, stabbing pains, neuralgia and lots of other tedious and annoying/bothersome but not serious symptoms. I only ever had the one really nasty relapse and could go for long periods without significant symptoms but then I’d have something that would bring me back to earth with a crash and remind me that I did have MS. I could have lived with that but then in 2011 out of the blue I had a letter from DWP saying my condition was going to be reassessed. I had an appointment with a new Neurologist who ‘undiagnosed me’ just like that! He suggested that the symptoms were definitely not neurological but may be in my head and referred me to the mental health team! Mental health of course found absolutely nothing wrong with me! I was delighted that it wasn’t MS but livid that I was being fobbed off with some nonsense about me imagining it all. Now my problem with all of this is that I still have all those symptoms and no explaination any more for what is causing them! I can no longer ask people to be careful what colour they write in because I can’t explain why I can’t read it. I also can’t explain why I get tired for no reason and regularly can’t feel my feet! And it gets worse! This week I started getting terrific stabbing pain in my chest that radiated down my left arm! Naturally I was worried i don’t have MS so it can’t be neurological so the only thing left was a heart attack. So I called NHS Direct. They sent me to hospital ruled out a heart problem and said my pain WAS neurological. So who is right? If I don’t have a heart problem then can someone please explain why I keep getting pain, spams, numbness and tingling that also isn’t neurological? Surely this is the only rational explaination (incidentally I have no injuries, have never broken a bone and don’t have any form of arthritis) This is now driving me mad. At least when I thought it was MS I could ignore it! Do I dare ask for yet another Neurology referral as suggested by the Dr at A&E and risk being labelled at best a hypochondriac and at worst a nutter!

Oh dear, what a total frustration for you. Please don’t put be put off seeing your gp.

Did the A&E doc give you a note for your own gp suggesting a referral to Neuro? Obviously, this would help to allay your concerns about the referral.

Ask your gp if he knows about the A&E attendance and ask about the follow up.

Try to be precise yet assertive and if your gp needs further info then take a list of dates & symptoms since the DWP reassement (which leaves a lot to be considered). If gp seems to fob you off then ask directly for a referral to a Neuro Consultant.

Good luck x

I think the key question is who was the person who told you it wasn’t probable MS? You say that the DWP wanted to reassess you. Does that mean that the doctor who undiagnosed you was working for the DWP? Or was it completely separate, just coincidental timing?

Ultimately, it is complete nonsense for anyone (even if he was a proper neuro) to dismiss your history and LP results and to undiagnose you without even a new MRI. You need to contest this!

I’m absolutely disgusted on your behalf!

Karen x

Hello, did you have MRIs etc done which ruled out the MS. I think I would ask GP to send you to another neuro for second opinion. Hope you get sorted soon.

Moyna x