Suddenly and inexplicably I’ve been thinking - is it ms??? Probably thinking about this because I’ve just received acknowledgement of my neurology referral. Thupis is so so stupid!!! I’ve double vision, constant toothache in my legs, my right foot decides to turn to the right the more I walk and I get these stupid, weird and mostly painful sensations and not forgetting last but not least, lack of concentration and overall tiredness. So, why am I feeling this way. Probably because I’ve caught for so long I’m worn out and starting to doubt myself. Is this natural.
I needed a look through some past posts to get a quick recap on your story, as I’m getting very forgetful lately.
But as I understand it, you’re not yet diagnosed with MS - or with anything - is that right?
In that case, I think there’s every room for doubt - or shouldn’t that rather be hope? - it has nothing to do with MS.
Unless or until you have a diagnosis, I think it’s premature to assume MS, so of course it’s not “stupid” to admit it might not be - there are at least 100 other possibilities.
If you’ve not even seen a neuro yet, I think the biggest mistake would be to convince yourself MS is the only explanation, and not stay open to the possibility it could be almost anything.
I don’t think it’s “inexplicable” you’re doubting it’s MS. I don’t think you should be too eager to embrace something you’ve never been diagnosed with. What will be, will be - you’ll have all the time in the world to accept it IF it’s confirmed. Until then, try not to prejudge.
If it was easy to diagnose MS from a simple checklist of symptoms, we wouldn’t have highly-paid neurologists needing months, or sometimes even years to be certain. Self-diagnosis is not a great idea - it may not be what you’re expecting. If it is, cross that bridge when you come to it.
Excellent post Tina.x
hi, i was undiagnosed for a few years, but had very typical PPMS symtoms. Then neuros said the tests (4 MRIs, 2 LPs, 2 EMGs, a VEP and oodles of blood tests) came back normal. But nothing else fitted the bill, so they gave me a 90% diagnosis of PPMS.
Some years later, a new neuro said I had HSP…hereditary spastic paraplegia. But as I knew of no family members with it, it was changed to Idiopathic SP.
So try not to talk yourself into MS, incase it isnt!
So many diseases mimic MS - and so many Neuros seem to disagree with one anothers diagnosis. So where do we stand.
Do we have faith in any of them.
They certainly like to lead people on with misdiagnosis as we know from folk on here. Some are kept in limbo for years.
Surely its about time a conclusive diagnosis can be made with just a MRI/LP/Blood Test.
Give us all peace of mind.
I had positive VEP, MRI, and all the symptoms. I had LP and although i had Obands to conclude MS, i had inflammation in the blood test they do at the same time which negated MS.
I told my Neuro, if you diagnosed me with MS now at my age would the world fall down, would it cost the NHS more to deal with me far from it. In actual fact it costs more to keep me hanging around with no diagnosis, as they were constantly trying to find something else wrong with me, so cost all the time.
They had a meeting and decided to say MS, but also now i have another neuro disease which is rare and more exciting for him lol.
I just think it cost more to keep fobbing people off. In the old days you just were put in a bath of hot water and if you reacted to the heat, and had the other symptoms you were diagnosed. Now its so many things its ludicrous.
No one wants to be given a diagnosis of MS but if they have eliminated ALL THE MIMICS and you still have most of the positive results why keep people hanging about.
I even went blind, eventually confirmed i had Opitcal neuritis with a VEP test in BOTH EYES, but because of my age they dragged their heals.
When i got told finally MS did it change anything. No it didnt well thats not true the one thing it did change is i became cheaper to keep on the NHS, as all the tests stopped lol and I feel soooooooooooo much better, I rarely see my GP but i still have all the symptoms and yes progressively things are getting worse, but I am at peace with myself now.
I have been diagnosed with MS and I indulge denial.
Until my next relapse, i am assuming the role of a CIS victim; a consequence of a very stressful period in my life.
I find it uplifting psychologically, to consider the current, lingering symptoms of my last relapse as a mere ‘health blip’, instead of an incurable burden.
Of course come the next relapse, i will have to find some other excuse for whatever i might end up feeling. But hopefully by then, i would have an even better method of maintaining the mental ‘pep to my step’.
Positive mental attitude (irrespective of its baseless foundations) for the win!
Thanks all for your replies. I know what you all mean by not jumping to conclusions.
Babs what kept me going is I knew if it was MS it would finally show itself properly and it did. It took a long time doing it though lol.
Keep going, keep positive you will get answers. You know your own body. x