Hi, this is my first time here. 15 days ago I went to see my consultant Neurologist and she told me that she was certain I did not have MND but that she thought that it was likely that I have MS. I said “on a scale of 1 to 10 is it 9 or more and she said yes.” I had a follow up appointment the following week and took my wife along (I’m 63 year old father of three), my consultant pretty much confirmed what she had said to me before but she cannot be sure until I’ve had a lumber puncture. This comes as no surprise to me as I’ve been aware of something wrong for a long time and have been deeply unhappy for months worrying about it all. But and here’s the thing it may be better to know or almost know even though the physical symptoms are getting gradually worse almost daily. Is it better to know? And is acceptance the key to moving forward, it seems to me that it is. I have tried worry, anxiety, anger and denial and they have got me nowhere at a massive cost in time effort and emotion.
hello outlook, sorry tou been having such a rough time.
I look at it like this, like you been unwell fo quite awhile now and angry and frustrated by he fact I don’t know what the cause is. But, I will be no worse off for “knowing” what it is, i’m ill anyway, knowing what it is isn’t going to make things worse, in fact i hope it will make things better as I would be able to understand and hopefully accept why I am ill, and once the reason is identified, hopefully get the right treatment.
Your neuro sounds great and it taking an honest approach with you and is at least not brushing you off like so many neuros do.
Even though many people “know” deep down inside what they have and an MS diagnosis is not a surprise, it can still be a shock when someone actually confirms it.
Give yourself time to absorb and accept and hopefully you’ll find that your are able to cope better emotionally.
Wishing you all the very best, pop in here fo support and advice aytime, they’re a great bunch of people on this forum.
Take care xxx
wise words, thanks, John
Hi John,
I have been running around for years between doctors trying to get more than one with the same view. Suggestions like ME, myelititis, virus, anxiety, MS and delayed radiation myelopathy have all been thrown at me. An MS dx would surely be far more favourable than Motor Neurone disease as live expecyancy for that is very short.
May I ask you how and when yours started and what symtoms have you know. Also what tests have you had (MRIs etc)
Take Care
Moyna xxx
Hallo there! First off, let me say how pleased i am to hear you dot have MND…a very cruel condition.
I identify with you, in your quest to know what is going on…I was suspected of having PPMS for a few years, as my clinical presentation was typical of it. Then I pushed for a diagnosis and was given a 95% surety of it. But none of my many tests showed anything. I felt I had MS and slotted into my new ID!
Suddenly a different neuro said it wasnt MS, but HSP…hereditary spastic paraparesis…very similar symptoms to MS…I couldnt walk, had spasms and spasticity, plus bladdder and bowel issues. I have a suprapubic catheter now.
The following year, HSP was discounted and PPMS was back on the cards and more tests were done…nothing again.
Then I saw my 15th neuro and he told me MS was defintely ruled out, as if I did have it, I would have had other symoms by then too.
So I was given this diagnoss;
idiopathic spastic paraparesis…cause unknown…no family history of it.
And that`s my story hun.
luv Pollx