No diagnosis yet, looking for advice

Hi everyone,

I’m 37, live in Scotland & have just been referred to neurology.
I have been going to my GP with various random symptoms in the last 10 years. Such as migraines, pins and needles and numbness in hands, weakness in leg walking up the stairs, clumsiness for eg always dropping things and burning myself when cooking & feeling like electric shocks in my neck. Unfortunately my GP did not take this further & put it down to my B12 deficiency which I have been receiving treatment for, for over 10 years. I then recovered - aside from the weakness in my legs which stayed.

Since Christmas I have been absolutely floored & I am experiencing fatigue, weakness in hands & arms, cramp in toes, tightness in calf muscles, some incontinence, brain fog, feeling dizzy when using stairs and just general feeling of being exhausted despite rest.

My family noticed some symptoms at Christmas and I saw a different GP who decided I needed to be seen by a neurologist.

Does any of this sound like MS? I feel a bit like I’m going mad, I don’t drink smoke, I exercise & eat well. Yet I definitely don’t feel healthy.

Any advice welcome, thank you :blush:

Hi there I am 36 from Scotland and I am experiencing similar symptoms I too have been referred to neurology next Wednesday I am around the bend not knowing what’s wrong I feel like I’m going mad constantly unwell I am hoping for a diagnosis very soon good luck take care :crossed_fingers:

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Hello Donna, and Hayley, welcome to the forum.

I’m afraid I can’t say if either of you have MS or not, but you’re both going to the right place to find out.

When I was referred, the first thing they did was a host of tests, then eliminated a whole bunch of conditions I’d never even heard of. They then looked at my past medical records and did some more tests, and eventually I was diagnosed with RRMS.

So you see, it takes a while, there is no yes/no test for MS, but don’t worry, as I say above, you’re going to the right place. Over the years I’ve seen four or five neuros, they were all friendly guys.

it can be a long process, but seeing a neuro is the first step.

Hope you both get some answers.


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Hi Ben, thanks for replying, I appreciate it. Your right, just have to be patient and let the professionals do their job. :relaxed:

Please let me know how you get on Hayley, the waiting and not knowing is awful. I’ve been trying to keep busy and occupied when I have the energy, goodluck :relieved:

i waited 16 years so hope your are quicker. MS is one of the hardest things to diagnosis. other things have same or very near too symptoms as per B12 etc. MS i am sure starts of with lots of silly things i had too then BLAM it hit me like a ton of bricks. I had sight issues to main one to start. If i had been an actor in a soap opera i would have been diagnosed with MS first time round in 2000 lol. BUT NOPE it was ignored.

It took until 2006 of some pretty scary stuff to finally be taken seriously when i couldnt get out of bed and walk. even then it took 10 more long years lol… i am convinced it was my birthday 1951.

Your young and hopefully will be taken more seriously. You have to get a ton of tests, from a nuerologist and probably MRI etc i hope they all come back clean as i wouldnt wish a diagnosis of MS on anyone to be honest. xxxx

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That sounds awful, sorry to hear it took so long did you. I hope the tests come back clear too but I will keep you updated x

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Hi Donna,

I am undiagnosed but have been going through the diagnosis journey for a while now.

Your journey sounds very much the same as mine.

I was referred to neurology in mid 2020 after years of symptoms which the doctors just dismissed.

I got a neurologist exam in May 2021 and then a mri in July, and the results (multiple lesions) in October.

I was booked in for my lumbar puncture tomorrow but that has now been cancelled (blooming covid) so am still in limbo.

So as you can see it can be a long process but please do persist.

I recognise you problem with stairs , this is a very annoying problem for me too.

I hope you get answers soon.

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I will Donna I’m there a week today hopefully we both get the answers we need let me know how u get on too take care :relaxed:

It sounds like a good idea to get an expert opinion, that’s for sure. Once you and your advisors suspect MS, that’s the only way to go.

Hi, did you get the lumbar puncture? Just had my first appt with neurology they say that I’m fit and healthy no signs of ms. But will still refer me for mri

Hi Hayley. How did you get on?
My assessment showed nothing of concern but they are still sending me for an mri. Feel like it must all be in my head then! X

Hi there Donna I was diagnosed with functional neurology disorder (FND) my MRI came back clear just awaiting on neurology psychologist. X

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How are you? Are you feeling any better? I don’t know much about FND but I take it there’s no medications to help, is it just psychotherapy? X

Sadly the waiting lists to see neurologists are six months plus at present.Even going private can take over a month.Ive been referred for nerve tests as I have burning pain in legs together with pins and needles and occasional numbness.Also had right leg give way.All very worrying.MRI of brain and spine revealed small stroke.

Hi Donna,

Apologies for the late reply , have been avoiding the Internet.

Not had the lumber puncture yet , think I had a relapse since November but seem to be levelling off again now , my only new ongoing symptom to join me is a constant pins and needles feeling in the face (which to be honest I can deal with)

The doctor has put me on gabapentin which is really helping .

Hope your mri arrives soon , its good that the neurologist is checking.