MS Society UK | Forum

Element of doubt

Hi everyone,
I was diagnosed with ppms in 2016 and my decline was steady for a number of years. At the end of summer 2021 I started to decline rapidly. I’m now using a wheelchair 24/7,along with many other functions affected. My concern has always been that my weakness,spasticity etc affects both legs and arms. I have never experienced any symptoms which are one sided. This along with my very rapid decline has got me wondering if something other than ms is at play
.I’m interested to hear from any other person with a ppms diagnosis with bilateral weakness etc.
Thank you

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Hello love.

Mmmm, tricky one…I also have PPMS…23 years of it now.

But it took 22 to get my diagnosis. I dont think having PPMS means one or both sides are affected. I did start with left sided problems and then the right side joined in.

My progression was rapid…in a wheelchair within 2 years. I rely heavily on hubby and carers for so many things.

Maybe getting an appointment with a neuro will help you to discuss your concerns.

Boudsxx

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Hi,
Yes,iv been trying to see my neurologist for ages. They have been on sick for a year and no irhet consultant too their place.
I thought that if a plaque was on the left side of the brain or spinal cord them symptoms would be on the other side. That’s where I gave difficulty with my symptoms.
Iv heard it said the ms can be difficult to diagnose but yours was extreme did you get any diagnosis before the ms one.

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Weird coincidence? I have been meaning to seek some advice on a change in my PPMS (2007). It has always effected my right side but since the turn of the year my left side has been acting up. Pain that normal painkillers didn’t help, that was what actually made me think. I also have ended up on the deck (my rear end, bum) looking back both legs gave up on me.
I’m merely saying what has been going on with me but you have made me think. I’d thought old age (65), wear and tear, osteoporosis so much to choose from…
Take care, be safe M :heart:

Did you get your diagnosis with scans, lumber puncture etc. I had scans and was shown the lesions,but lesions are in other conditions too. And that’s where my doubt comes from k don’t doubt it’s not a neurological condition, just doubt the ms one. I agree with what you say that sometimes getting older other conditions can cause problems. I had a fracture in my lumber spine and after a Dexter scan I also got a diagnosis of osteoporosis. I had not fallen just had tremendous pain

When I do get to see a neuroo going to raise my concerns and see where it takes me.

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Yes, I did get a different diagnosis…but only for a short time
ie HSP…hereditary spastic paraparesis…quite often muddled up with suspicions of MS. Genetic tests proved it wasnt.
Boudsx

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I’m thinking I could have neuromyelitis optica, again that can get confused with ms.

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Hi
I had scans and lumber puncture, strangely I too have a fracture to L1 found when having a Dexter scan!
After years of not knowing what the hell was wrong with me, it came as a relief. Not knowing is the problem and hellish to live with. A label helps our brain our cognition every thing, but ultimately whatever it is , we have to live with it. That probably does not help try and take every day as it comes. Platitudes are possibly even worse, anti depression tablets help me.
Welcome to the cool club :sunglasses: life is a bitch.
Take care, be safe, M :heartbeat: x

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It may sound ludicrous to some, but I was actually relieved to finally get my diagnosis of MS…after all those years.Plus it was a better one than HSP
Boudsx

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It must have been a relief after all those years. Did the previous diagnosis concern you at all.

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Yes, verymuch so, because HSP carries a 50% chance og being handed down to your offspring. I felt terrible about that, so was ‘happier’ with MS.
Boudsx

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