Non-diagnosis

Hi,

back in 2003 I went to the Drs with pins and needles surging up my legs when I bent my neck, and pins and needles in my hands. I thought it was a trapped nerve. I had an MRI scan, and when I went to see the consultant, I expected to hear it was only a virus. He showed me approx 8 areas of de-myelinisation and told me I had a 1 in 3 chance of developing MS. He did not tell me I has MS.

my symptoms subsided eventually, and virtually disappeared. Except for the tiredness. In 2007 after the birth of my first child, my symptoms came back with a vengeance. The pins and needles were so strong in my feet and legs that I could barely walk. I went to my dr who told me to try and rest!

I expected the same to happen after the birth of my 2nd, but all I felt was incredible fatigue. I put that down to child no. 2.

i have been back to my Dr a few times with symptoms of a crawling sensation over my scalp, pins and needles and fatigue, but at no point has he referred me back to a neurologist or for any further scans. He just says it is a symptom of screlosis on the brain.

at no point have I had a definitive diagnosis.

i have started working part time in a school, and have found that my tiredness is sometimes overwhelming - to the point of making me throw up. I feel like some days I have to really concentrate on just putting one foot in front of another, let alone getting my brain around equivalent fractions!

i almost need somebody to tell me I actually have MS, so I can own it and make the necessary changes. I end up up feeling like a hypochondriac who’s just so tired all the time.

Is anybody in the same boat?

Mmmm, well I do think you deserve a better reaction than just telling you to rest!

If you were told you had 8 years of demylination, then that could be MS…your other symptoms also could have MS like basis.

I think you could ask your GP for a new referral to a neurologist. With him saying your pins and needles are just sclerosis of the brain , to me this should be further investigated by a specialist in neurological conditions.

It may turn out to be something other than MS but I definitely think it needs looking into.

luv Pollx

Thank you for your advice.

The last time I went back to my Dr and asked him if he could refer me back to my neurologist, he told me that “he wouldn’t be able to tell me anything more than the dr could”. I felt like I had come to the end of that avenue! Typically British, I went away, didn’t make a fuss and had a cry in my car!

perhaps the time has come to get a bit more demanding!

I’m a bit mystified by your GP’s attitude, Alison. On the basis of what you say, I think you are entirely justified in putting your foot down on this one and politely insisting on a neurology referral.

Good luck.

Alison

why do we have specialists and GPs? GPs know lots of stuff about a lot of stuff

BUT

specialists know a lot more about a particular medical problem

OR

have I got that wrong?

Can you see another GP at the same practice and ask for a new referral?

pollx

Hi Allison, yes you definitely need to get back to the GP & ask for a referral, don’t be fobbed off. It’s up to a specialist neuro to investigate, your GP doesn’t have that knowledge.

Good luck, stand firm

Rosina x

2 Likes

I have an appointment with my GP next Thursday, so will be more forthright then, and will get a plan to move forward in place.

If your GP refuses, speak to the practise manager about it. With the symptoms you describe along with your past history you really should be referred with no issues or arguments from the GP. They don’t know everything about neurological problems, that is not what they specialise in so shouldn’t be acting like they do