I’ve just had my follow up appointment today with my Neuro. This was my second appointment with him - in between the two appointments I’ve had an MRI and Nerve Conductivity tests. The Nerve tests were all fine. The MRI showed “some degree of small white matter change but in the absence of any other clear cut pathology or space occupying lesion” and was considered “normal for my age”.
Since the tests I have had a strong episode of fatigue and weird and very unpleasant stiff/concretey leg feeling which I think can be described as spasticity. That wore off after about 5 weeks or so and I have been fine since. My original symptoms of numbness, tingling and pain (which I had for 18 months) went just before I had the tests.
My Neuro told me today (for the first time) that until he saw my results he was strongly suspecting MS. He has now decided I do not have MS though I could had CFS or ME. I don’t know much about CFS and what I have previously read about ME makes me think that’s not what I have (or had). He has signed me off his list and is writing a letter to my GP to inform him I shouldn’t be given a particular drug (not sure which one) as I am still regularly experiencing Myoclonic jerks and this drug could make it worse.
So I feel a bit bewildered. I guess that’s it then. Still don’t feel like me any more, though I have got used to the silly myoclonic jerks hee hee…
Anyone else had this happen? Looking back I’ve had two years of feeling really, really bad and now I still don’t know what hit me, if it will come back, what’s going on or anything…heeeeellllpppppppp…
Hi I am the same as you, my MRI showed high signal changes, neuro said they were non- specific…Have the stiffness in my legs and arms and other symptoms that mimic MS. Was told my a ENT consultant that I had Basilar Migraine, and was given betablockers, still have good and bad days.
I have not worked for a yr, I cant commit to anything because what I have is so unpredictable!!!
I hope you get some anwers because its so frustrating, GP’s and Consultants can put it down to anixety and I find this really shocking…
Sorry to hear that you didn’t get any clear cut answers. There is a lot of misunderstanding about ME so it might be worthwhile you having a look at an ME-dedicated website to see if it rings any bells for you. ME is now a recognised neurological disorder which can cause all sorts of symptoms and even fatality in some extreme cases. If it doesn’t sound remotely like you, then I guess you have three options: wait for something else to happen and get another referral, ask for a second opinion right now or, if you can afford it, get a private MRI scan to see if it can reveal anything more.
The danger of asking for a second opinion right now is that all the tests will show the same results and therefore you’ll get the same answer.
The reason I add in the private MRI scan option is the chance that the MRI scans you had on the NHS weren’t very good, in which case, they could miss lesions. If you went this route, you would have to pick the scanning unit very carefully to make sure you get your money’s worth. They would have to have a 3T scanner and offer slices of 3mm at most (thinner is better: one slice = one image). If your NHS images were good, you would probably be wasting your money though.
A couple of other things: the report’s “some degree of small white matter change” isn’t very clear so it might be worthwhile getting hold of the original report. Also, spasticity is the inability to relax muscles. If yours was a sensation rather than an actual physical thing, you would be best to not include spasticity in your symptoms when checking out ME - it might take you on a wild goose chase.
Rizzo - I’m really glad you replied as you were so helpful when I last posted regarding my MRI results.
I’ve had a look at the ME association website and there are symptoms of ME which I could relate to, but one thing I read was that most people suffering with ME would not be able to walk for than half a mile or so without being laid up afterwards. At the moment I am jogging on a running machine for one mile 3 times a week so that just doesn’t sound like ME to me - unless there is a remission stage?
I agree that there doesn’t seem much point in doing anything further at the moment. I think I’m going to have to wait and see what happens. I’ve no idea how good my NHS images were, I did ask my Neuro to elaborate on the report I had but he couldn’t find the original report and just said the areas of white matter change were small and not in the area you would expect them to be if I had MS.
My Spasticity was definitely a physical thing as well as a sensation. The weirdest thing! In short, I felt like I was walking up hill all the time or wading through concrete! Walking, getting in and out of the car etc was hard work indeed. My usual dog walk which has never once been even remotely been physically demanding for me became a major task and in the end poor doggy was getting much shorter walks.
At the moment I’m feeling a lot better than how I was - although I am still shattered most of the time - so I guess it’s tie to wait (and hope!)
Hello folks! This is my first post, and I confess to feeling rather nervous! Ive recently had an MRI scan which didnt show any lesions, though my consultant did say he wasnt ruling out MS. My main symptoms, apart from fatigue, are problems with walking, as my legs go completely weak without any warning, and I can barely move them. My balance goes too, so I have to grab things to hold on to. Im currently using 2 sticks if I have to walk anywhere, which, obviously makes me look and feel like an old woman! I have also had several episodes of total body paralysis, when I literally cannot move any part of my body. Its very frightening, especially if Im on my own, which makes me feel very nervous if I`m at home alone. Has anyone else experienced similar symptoms?
’ He has signed me off his list and is writing a letter to my GP to inform him I shouldn’t be given a particular drug (not sure which one) as I am still regularly experiencing Myoclonic jerks and this drug could make it worse.
Im just wondering if anyone knows what this drug could be as I get these myoclonic jerks and would hate to think Im on something that could make it worse.
I do hope you get answers soon to what is causing all your problems.
Hi Heather, I should think I will get a copy of the letter to my GP, when I do, I’ll track eryou down and let you know what it is. Excuse the typos - keyboard has gone mad!
Hi Snorkle! I had the same non specific white lesions result twice from 2 brain scans done close together - plus an enlarged pituitary gland for which I’ve been under an endocrinologist - all tests have come back relatively normal so he has said he believes my symptoms and clinical signs are neurological (the endo is however periodically going to do MRI’s to monitor my Pituitary gland)
I’m waiting to see the MS specialist…the neuro I saw was about as useful as an ashtray on a motorbike - other than the fact he’s referred me to the MS doc! The neurospinal surgeon I’m under and my GP’s have however been excellent and have said they still beleive it’s likely to be MS despite the scans - and that we have to wait to see how things ‘evolve’ - I’m having another brain and full spinal MRI soon
What I’m trying to say without going as far as writing a novel (!!) is that I understand where you are coming from re the whole ‘wait & see’ scenario! Good luck & hopefully ‘it’ will all pan out xxxjenxxx
