Am I being paranoid or are my worries just waiting to be confirmed

Hi I’m a new member Gareth ,48 dad of three.

I’ve had health problems the last three years and a couple of years ago after a combination of symptoms from numb fingers, to weakness in joints and forgetting things and struggling to get words out after having had various lesser causes ruled out my go suggested to prepare myself that I may have ms. After tests that ruled out carpal tunnel I was sent to a specialist in Halifax who struggled to find even the basics for ms tests and dismissed me in less than five minutes saying it was carpal tunnel even though I had advised her this had already been ruled out.

While not wanting to be diagnosed with MS I knew something wasn’t right and pushed my gp for further tests I had an MRI scan that showed lesions but was told this was inconclusive and very rarely does anyone have a perfect scan. I saw a second MS specialist who was much more thorough and did all the tests barring a lumbar test. Although not totally ruling it out she suggested it was more likely chronic fatigue syndrome.

I’ve soldiered on the last couple of years working 6 day weeks with no holiday as have been fighting to keep a little shop I own from closing but my symptoms haven’t gone away. Over the last two weeks they include:

unexplained twinges pain in head in different places not a headache or migraine which I know too well

inability to get words out and even get my kids names right

pain behind my left eye and worsening vision (I’ve had an eye test and am getting new glasses)

sudden pain in the nerve end of one finger tip for no apparent reason

generally feeling exhausted and finding walking like wading through water

feeling on an evening that I cannot control my bladder

spasms in my shoulder

feeling dizzy and losing my balance

generally feeling low

Excuse this being a bit of a long winded post I am going back to see a gp next week and have had my eyes tested this week

Am i being neurotic or does this sound like early stage ms

While not wanting to have MS if I have I want to plan get treatment manage it better etc

any advice appreciated

hi gareth

sorry about the shock of suddenly feeling your body let you down.

chronic fatigue syndrome may well be what is causing it, given the hours you’ve been working.

carry on keeping your gp updated and ask for help with symptom management.

bladder issues - you can self refer to the bladder and bowel clinic.

feeling low - try mindfulness meditation.

try some seated exercises which won’t wear you out like aerobic exercise or weight training.

buy some of those stretchy bands from any sports shop - you can use them as resistance during your seated exercise.

ask your gp if there are any seated exercise classes in your area.

take it easy, you are well due a more restful life.

carole x

Thanks Carole for the kind reply and advice but I really don’t think my condition is chronic fatigue syndrome that doesn’t explain so many of my symptoms or the results of the MRI.

Back to the gp next week to try again to get a diagnosis

Hi Gareth

I understand that you want to get answers. The trouble is that there are so many symptoms associated with MS that could also be connected to another disease / disorder.

Why don’t you (if you can afford it), get in touch with the hospital where they did the MRI which showed lesions and see if you can now get a copy of the scan on a disc. They will charge you for it, some hospitals charge about £10, but I’ve been charged £25 in the past.

See if your GP is able to re refer you to another NHS neurologist first, but if not, find another MS specialist with a private practice as well as an NHS one. Get your GP to refer you to the private neuro and get an appointment, this shouldn’t take long to arrange. Take the scan with you together with details of what you’ve experienced and the approximate dates. If that neuro reviews your MRI and thinks along with the others you’ve seen, that it’s not MS, then you’ll have your answer. However, if s/he thinks it’s possible MS, then you could get referred back to that neurologists NHS list for a lumbar puncture, further MRI etc.

All this is going to cost money (you should be able to get referred back to the NHS so it’s only one private appointment that you’d pay for), but the problem is that your GP cannot diagnose or rule out MS. Only a neurologist can do that, and you’ve seen two who don’t think it’s MS but maybe haven’t done as many tests as they might.

If another neurologist thinks it’s not MS, rather than ask what they think it is ask why not MS. At least that way you’ll have a concrete basis to move forward with.

All the best


Thanks Sue great advice I’ll certainly take up and keep you informed