Advice for someone unsure whether to persue?

If I could ask for advice on here…
I am under investigation for my current symptoms which started as a numb heel and underfoot. My investigation is being looked at by a multi skeleton team not neurologist team.
I visited my GP who referred me to the above, I originally dealt with spine team who other than brisk knees declared me ok and passed onto physio. The physio noticed I could not raise my ankle upwards and neither could they, so referred me to foot and ankle triage. They x-rayed and x-ray was clear for a bone block.
After a more thorough investigation that discovered I had ankle clonus, unable to do a Straight leg raise on my own or with help. They referred me back to spinal which also this time observed the same, and at this point the numbness has reached knee level, they also found I have brisk reflex in the elbow on the same side, brisk reflex in both knees and barley a reflex in the ankle involved. I am now waiting on a MRI on the spine.
Other symptoms not being investigated at this time include 2 x episodes of electric shock feelings in fingers followed by numbness lasting approx. 3 months that have totally resolved. Bladder at night that can not be fully emptied and keeps me up plus needing to empty bowels at night following bum cramps.
To be fair, no one at this stage has mentioned MS, but this has been mentioned by friends and a quick Google could go either way. My age might be against this at 54?
Is this something anyone recognizes before I think about broaching the gps again.
I also have an autoimmune (UC) already. I had all the normal blood tests for vitamin deficiency, b12, vit d, diabetes and several others etc. to rule those out at the start of this.
Thank you so much for taking time to read.

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If I were you, I would press on and try to find out what ails. If there is some disease process at work, it’s going to be worth knowing about so you can manage it as best you can. Age might make it less likely, but it isn’t a barrier, I’m afraid. I have at least one friend who was dx with MS at about your age, and it isn’t as unusual as all that.

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I was only diagnosed with ms in December and I’m 55. I’d experienced many symptoms over the previous 5 years. But finally come to a head in December. But you need to let them do the tests. At least they’re listening to you, which is a very positive thing.
**

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Thanks both for kind reply.
Just to clarify I am only being seen by an orthopedic team at the moment so am waiting for MRI of spine to see if any issues there. If not will get passed back to GP.
This is where I don’t know whether to bring up possibility of MS as I could be putting 2 & 2 together to come up with 10?
Animali, sorry to hear your diagnosis at 55, do you mind sharing your symptoms with me?

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Back in 2020, I had a series of increased food intolerances, reflux, constipation. My doctors did blood tests came back they said I’d picked up a nasty infection after treatment ended up in hospital further tests then discharged. Pins and needles in both feet, feeling cold and fatigue, which eased with time. Then a fall in 2023. Then reflux, food intolerances to the extent that certain foods made me tachycardic, I’ve had to give up loads of foods because of it. Then the start of high blood pressure, then they picked up set. In December woke up with thunder clap headache with tingling lips, my trip to hospital lasted 3 weeks. After scans, lumbar puncture methyl prednisone infusion after they decided it was ms. I’m now going through another relapse, at present 80% of my head face and mouth is numb but remaining hopeful that I get some of the feeling back. But 70 % of my head has been numb since December, so i tend to wear hats now as the slightest of breeze is very painful. Feet are numb, right are numb and have bladder and bowel issues. I’ve had to deal with rubbish GP who blames everything on IBS, so I’ve had to do some complaining along the way. This time I had to fight for treatment, I was photophobic, photophobic, eye pain, head pain and burning eyes with chronic fatigue. The steroids are helping with the eye cream.

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I am so sorry to hear what you have been through and you are going through now, your GP harping on about IBS as well instead of dealing with the actual problems!
I really appreciate you sharing, thank you

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**you are ver welcome, and really hope you are able to get some answers to resolve your concerns. It’s just battle now to get anything done.
Stay positive and keep strong, trust me it really helps. **

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As others here have said, keep trying to find out what ails you. I was diagnosed at 54, with hindsight I had been having odd symptoms at intervals since I was a teenager, these were always put down to being clumsy, studying too hard, staying up to late etc.

Ask for a referral to Neurology if the spine MRI doesn’t show anything to be causing the issues you are having. They can run tests and order MRIs of your brain and full spine to check for signs of lesions that may be causing your issues.

I went from x-ray of neck (possible injury/bone growth causing issues) to MRI of neck (still looking for issues with slipped discs etc.) to Neurology for detailed MRIs of Brain and Full Spine. 3 (probably not related to MS) lesions in brain and 4 (definitely MS) in spinal cord.

Docs like to rule out the most obvious before heading down the neuro route.

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Thanks Theresa, it seems the age isn’t necessarily the barrier I thought.
I had an X-ray at the start as well but for the possibility of a bony block in ankle as I couldn’t rise it up, all clear but it led to all this.
Fingers crossed they contact me soon for my MRI of the spine, and although this probably sounds wrong, I am pleased they found the lesions on yours so it allowed for diagnosis.
You are right, when you look back you can see possible signs, I have had something similar to the MS hug at least ion 3 occasions that lasted a couple of days each time.

I had the numbness in both hands (specific areas and fingers only, mirroring symptoms) during my second relapse. The neuropathy lasted about 7 months, then it dissappeared. I am turning 44 y o soon. They talked about possible MS to me since day 1 of my first relapse in 2020, which was optic neuritis, but the ophthalmologist kinda did it accidentally (they thought I was a doctor :sweat_smile:). Then while I was gathering results, they were denying MS as I did not meet the criteria over space and time. I wasn’t buying it. I had read academic research that over 45% of the cases of first ON lead to an MS diagnosis within five years. I got diagnosed last September. Insist on the tests. I used the “possible MS” rhetoric in all my conversations with the doctors. Have you tested your insuline levels too?

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Hi Maria, sorry to hear you have MS and the struggle to get diagnosed. I think it is the having to insist and put up with being pushed back that worries me most.
I have not suffered any eye issues at this point and am aware it makes more people sit up and start paying attention.

Is this insulin test different to the diabetes test? I have had a diabetes check and all normal.

I had the food intolerance thing about 5 -6 years ago messed-up all my gi track bladder bowls etc… got rushed to hospital as i lost over 2 st doctors thinking it was the Big C did soft tissue scan found nothing … then i slowly recovered. Then 6 year later i had second attack TM transverse myelitis lost all functions on my right side … motor …at the age of 47 .

I’m so sorry to read this, did your food intolerances settle down? It’s not nice at all, I’ve lost over 4 stone now and have to constantly watch what I eat otherwise it makes me tachycardic.

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Oh God, food intolerance is also an MS thing? It really is the condition that keeps giving isn’t it.
This forum does make you really think back, last year lost a stone and a half and I thought no reason, although I am back to normal weight now.

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Yer it did go away took over a year tbh i was vegetarian for that period of time …

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That’s good to know, so hopefully mine will settle down as well.

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Hi and welcome to the Forum!! Ive just joined too
If I were you i would request an MRI and a Lumbar Puncture
My MS started up with just a numb area on my left knee. I had all the tests with the visual etc and an MRI and nothing shoed up. The numbness continued into both legs and they thought I had a brain tumour…which was also negative. In the end some months later they carried out the Lumbar Puncture and it confirmed MS. I am pleased to say I am 32 years on from that first relapse and still have PMA and am considering starting a new DMT Siponimod…They are developing new DMT’s for many types of MS these days so there is hope on the horizon for many. Good luck with your journey

Thanks AJp1969, I do finally have a spine and neck MRI booked for the end of June. Saw the physio today who didn’t want to continue treatment until the results are in, she assured me the orthopedic practitioner would advise my GP to go down neurologist route if nothing found. She tested various movements and reflexes today and they have continued to worsen week on week and the numbness is spreading.
Tbh I might go to a private neurologist in the area to ask for a lumber puncture and brain MRI if nothing found in the spine one,but a quick search shows even private in my area has no appointments until September which is slightly concerning so I dread to think what the NHS list is like.

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