I have been ill for 13yrs and was always told i had m.e/cfs. I had a bad bout of vertigo etc last november and had a ct scan which showed shadows so i had to have an mri. The neurologist showed me it and there were about 6 lesions on it and he said if he had looked at my scan before i walked in he would have said i definitely had ms. But he wanted me to have a lumbar puncture which i had 8 weeks ago. I have been to see my gp today and the reults were that the oligloconal bands were negative and the likelihood of ms in the future is low.
What happens now with no definite diagnosis? He just said i will have to wait and see if i have another attack. If the LP was negative what’s all the lesion with then and all the odd symptoms i have had over the years. I feel like i am still no further forward.
Hi My LP ceme back negative for bands but positive for inflammation , I have lesions on my brain and one on my spine. In the last 6 mths 3. Neuros have said suspected MS , but after this result the ms neuro had ordered a ct scan off my abdomen and lungs to rule out another condition Hope you get some answers soon Gray
Have you had evoked potentials tests? They can help diagnose ms. As you probably know there are loads of other things that also have similar symptoms too. Don’t let them fob you off, keep fighting for tests to get a definite diagnosis. Good luck!
No i haven’t had evoked potential tests but when i see the neuro again i will ask about this. I don’t want to have anything but i feel a little dis-heartened that the LP was negative. I would rather just know, 13yrs of not knowing what i have is a bit too long.
Oh crikey Zipster. All that waiting and you’re no further forward. Just don’t give up, and that’s an order!!
Make sure you keep hounding them for answers and don’t let them fob you off. Easier said than done, I know, but you really do need some definitive answers.
Hello, I was diagnosed without an LP, he explained my clinical exam and MRI was enough to diagnose. I have since then had an LP as my Neuro is very thorough and wants to tick the boxes etc. I am grateful for that. I did ask him at the time if my LP were to be clear would it change the diagnosis (holding onto hope there!) and he said no. A clear LP does not rule out MS, I wouldn’t be fobbed off due to that reason. Sam x
If you satisfy the McDonald criteria for MS without a LP then you wont need one. If you dont just on MRI and physical exam then a LP is usually given. Lots of things can give lesions somake sure they keep looking.
That’s the reason why my neuro said there was no point in having an LP - for me at this stage - she said if it’s negative it just means chances of another attack are lower, and if positive (for O bands I presume) then higher, but either way would not lead to definite dx without another attack. So I haven’t had one (LP) and so far so good.
For me, I try not to think about it at all, and assume I won’t have another attack. But I realise that’s easier because I’ve only had one episode (which lasted 5-6 months) and from which I’ve made an almost complete recovery.
Is it possible that the 13 years were cfs/me and that this (the lesions) is something separate / new?
13 years is a long time to be poorly, without knowing what is causing it.
I`ve been like that for 16 years now.
In my early days, I was falling all over the place, having spasms, but didnt know what they were, felt tired all the time, had bowel and bladder accidents and felt just sooooo frustrated. I had always been very independent, a go-getter and a had a good senior position at work.
PPMS was suspected for a few years, as the symptoms fitted, yet 4 MRIs, 2 LPs, 2 EMGs, a VEP test and oodles of bloods gave no inclination of what was going on.
I had a 95% dx of PPMS for some years as well. Then another neuro said it was HSP.(hereditary spastic paraparesis). The following year it was reverted to PPMS, but back to HSP a year later!
i continued to attend neuro clinics. There has never been any mention of discharging me and I am eligible for help from physio, district nurses, urology, social services and wheelchair services.
You must keep hanging in there hun, and attend every appointment, as one day you may get a dx. I know it is hard going luv, I really do. But you have to plod on and be hopeful that that day will come.
my current dx isnt a full one as we have no-one in our family with similar symptoms to mine.
I’ve found myself in this situation. After 2 clinical episodes this year leaving me with severe mobility problems, vertigo,fatigue,brain fog, drop foot falling over, pains, as well as vision issues and a letter from an optition saying I’m showing neurological Signs I had an mri on the brain. Lesions in the ms areas lead to the neurologist saying he thought it was ms, then sent me for an lp and spinal mri. Both ok so his words were…" good news it’s not neurological"!!! Omg. What! Three doctors all said ms and from examining me said neurological. I explained some bladder and bowel problems I’m having now and today had a lower spinal mri. I’m annoyed that he can put me through 6 months of thinking I have ms, then say it’s nothing after not being able to get to the kitchen without help. I can’t understand it, and only from a test that’s got a 10-15% false negative. Grrrr I’m only going to accept this with no other symptoms.
I know how you feel…confessed and frustrated. Hope you get some answers soon x