I saw neuro yesterday. He was going to discharge me but after seeing me decided not - I shall be reviewed in 12 months time (I could spit! LOL)
I told him about my painful eye, blurred & double vision and loss of colour.
I told him about the tightness in my ribs and poor walking.
My speech, as always, was slurred. Honestly I sound and stagger like an old lush
I even asked could this be MS. He said no but he could see that it looked similar to R&R MS but it definitely wasnât. Iâd feel more confident if I had had VEP, LP and/or spinal MRI rather than just his word.
Apparently I have âstroke symptoms - cause unknownâ and I am one of 5 patients on his list who present the same.
I cried this morning - I rarely cry - sheer frustration.
In a day or so I know I shall pick myself up & off to my GP - who is also concerned.
Well, as you say, at least you werenât discharged Neuros do get things wrong at times, just like we all do, but they are pretty highly trained, so I guess he has his reasons for ruling out MS and therefore not doing the other tests. Be nice if heâd tell you what they are though so you could understand! I hope your GP can help. In fact, make sure and get all the help and support that you can: speech therapy for your slurring, ophthalmology for your eyes, neurophysio for any physical problems, etc. Itâs all there - for people who ask! Karen x
That sort of makes sense. For MS to affect lots of places, there has to be lots of lesions. It which case something would almost certainly have shown up on the MRI. Horribly frustrating Kx
I was told almost exactly the same thing by my neuro years ago. I had an âunderwhelming MRIâ (his words) with only 4 lesions, a clear VEP and clear LP so was told it definitely wasnât MS and that I had too many symptoms. Painful, blurry vision with a 50% deficit in my right eye (normal VEP though???) spasticity, weakness, weird reflexesâŚ
Fast track 6 years down the track and I still have a normal VEP, now have 9 lesions on MRI but have clinically definite MS and have many ares of deficits and many symptoms. My new neuro explains it as being the result of axonal damage with relatively little new lesions being formed.
Lesion load and disability are notorious for not correlating very well so my lay personâs view is that you can have multiple symptoms with little MRI evidence but that it can take a brave and very knowledgeable neuro to diagnose based more on the clinical signs than on the test results.
It is very frustrating as I well remember but if it is MS it will definitely make itself known in time so be patient and in time it will show itselfâŚ
Itâs very true symptoms and MRI donât correlate always as time is the key.
Waiting is very difficult though. I know for me the thought that âIf theyâd got it earlier maybe I wouldâve been better or not as bad?â crosses my mind.
I guess if the signs arenât there, theyâre not there. Its why limboland is so difficult.
Neuros do get things wrong at times, just like we all do, but they are pretty highly trained, so I guess he has his reasons for ruling out MS and therefore not doing the other tests. Be nice if heâd tell you what they are though so you could understand! I hope your GP can help. In fact, make sure and get all the help and support that you can: speech therapy for your slurring, ophthalmology for your eyes, neurophysio for any physical problems, etc. Itâs all there - for people who ask! Karen x