Diagnosis and uncertainty

Hi everyone - just want to ask a few questions. I am 65 and since the menopause have had symptoms of MS mildly which have gradually got worse. I have not had a diagnosis yet - but when the doc said I may have it everything suddenly seemed to make sense. I am now very confused though as had an MRI that is ‘clear’. So now I am not sure what is wrong - but when I read stuff on this website -it always seems to point to MS. Has anyone else had a clear MRI bt then subsequently been diagnosed please? I am waiting to see the neurologist which could be a while. It is all quite stressful. Thank you would really appreciate your experiences.

As this piece from a respected source suggests, menopause can stir things up a bit on the MS front. I’m 60 and that is one of the many reasons I’m in no hurry to stop my HRT.

I am sorry that you’re having a worrying time and hope you get some clarity soon.


Hi, yes, I had 3 MRIs, 2 LPs, an EMG, a VEP and other tests, but none proved MS.

It took 22 years to get a diagnosis, even though I had typical PPMS symptoms from the onset when I was 45. I am now 70.

Love Boudsx

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Thank you so much for this - I thought I was going mad! Sorry to hear you had to go through all of that! Would you mind telling me what your symptoms are as I know it is different for everyone? I do hope you cope OK and they haven’t progressed too much. I just feel very dismissed at the moment!

Thank you for the info - kind of you.

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Hi again.
Glad I helped a bit.

So you ask about symptoms now…here goes…

I am full time wheelchair (20 years)
I am hoisted with ceiling hoist for all transfers. I have a hoist in lounge to put me into tilt and recline chair, plus 1 in bedroom to get in/out of bed.

I cant stand (12 years)

My left hand curls. it is very difficult to use. I can only use right to fed myself, prefer finger food. I have bendy cutlery. I often spill food.

I am deaf in right ear, making group conversations difficult… I say EH? a lot!

I sometimes choke on saliva and water.

I am doubly incontinent. I have a supra pubic catheter…changed monthly by district nurse.

I am badly affected by fatigue and spend around 16 hours in bed.

I love films, documentaries, reading biographies, singing and chatting and laughing.

Meds wise I take;
amitriptyline which is great nerve pain killer
BP meds, cholesterol med, laxido, bladder calmer, acid reflux stopper, and calci D for bone density.

There you go chuck!
love Boudsx

So sorry to hear all the problems you have had - hope you have plenty of support. I am not anywhere near that bad. Have a lot of stabbing in feet, can’t regulate my body temperature, acid reflux, fatigue, dizziness, headaches, brain fog etc etc but still have my mobility so very hard for you. So sorry.

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Magnesium deficiency is pretty common in the menopause and after. It can cause a range of neurological issues.

Dear Ziola - thank you for that information. Anne

Thank you for the info Alison. Anne

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Hi Pernod63

I had 9 years of “Is this MS or is it Menopause?”.

Mine started in 2013 with weird numbness in my left hand - thought I had cricked my shoulder at first - 2 weeks later the numbness had spread up my arm to my shoulder and severe pins and needles and ‘sunburn’ sensation had joined in, followed rapidly by electric shock like sensation down my spine if I tucked my chin to my chest - which is not good when you tend to sleep curled up. The initial Neuro MRIs showed 3 small lesions in my brain and nothing in my spine; Visually Evoked Potential tests showed possible optic neuritis at some point in the past (the only time I can remember anything sounding like the ON symptoms was when I was doing my O’Levels and when I was at college - put it down to eye strain from studying too much).

The brain had not changed at all after 3 years, and did not correspond with the symptoms I was having, which now included fatigue and balance issues. A few years later and my walking gait had altered such that I needed orthotic insoles in my shoes, and bladder issues (urine retention & UTIs) joined in; after a couple of years I eventually got an appointment with the Urology Dept, who had a minor fit when they checked me over (major urine retention) and I was rapidly back in for a spinal MRI which now showed 4 lesions - causing the bladder and gait issues.

For 9 years I had been told it was migraine, menopause, anxiety, depression, attention seeking, stress and psychogenic. It is, in fact, MS - I was diagnosed in December 2022 and am now waiting on results of latest MRI with contrast, bloods, EKG etc. to find out what, if any, DMT I will be offered/can take.

I find that mindfulness meditation can help with the stressful nature of going through the various tests, dealing with Neuros and GPs and other specialisms and waiting on results and /or appointments. Finding a few minutes every day to just focus on the moment, whatever that may be; taking a couple of minutes to just enjoy the first mug of tea/coffee of the day; a moment to appreciate how neat the bed you’ve just made up is; enjoy a few minutes watching birds flying around outside; whatever it is you can spend a few minutes appreciating.

Hope your neurology appointment comes up soon.

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Dear Theresa

Thank you for taking the time to let me know what you have been through. Sorry to hear how hard it has been. I do hope you get meds soon. It seems it is so hard to diagnose and so different for everyone. Hope you have plenty of support and all the best. Anne

Dear Boudsx

I did reply to you but only just getting the hang of this so hope you got my messages. Thank you for all the information and sorry to hear your struggles.
Anne x

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