I was told last week that my MRI scan showed lesions consistent with demylinating disease. This was shocking. But, in a sense, it was reassuring, as I had worried about MND/ALS, and the scan suggested MS.
However, I have noticed that among the muscles spasms coming and going across my limbs, kneck, chest etc, I have a quite gentle but fairly constant muscle twitch in my calf.
Im worried because I read that gentle twitches might be MND. Also I read that MND twitches do not go when u move the limb. This one does go but comes back almost immediately once the muscle is at rest.
There doesnt seem to be noticeable muscle weakness and I know that by the time MND twitches occur the muscle is dying and so there will tend to be weakness.
But my question is - is it possible for a gentle almost continuos twitch to be an MS one, or might I also have MND? I know having both is unlikely but my luck has been so bad in the last 12 months that Im worried sick.
Thanks for any help. And sorry if Im being a bit over anxious. I know that Ive had a kind of nervous breakdown in the alst few weeks.
Blimey Rupert, that would be incredibly bad luck, MS plus MND. I’m not saying it can’t happen but a bit unlikely. And only your neurologist is going to be able to help you out with answers to that question.
It sounds like you are having a truly crappy time at the moment. But you are doing the right thing by coming on here and talking your fears and worries through with all of us.
Hi, I have suffered from muscle twitches and spasms exactly as you describe for 12 years. Apart from tingling it was my first symptom. Once I move it stops but starts as soon as I relax. I have been prescribed medication which really helps. Try not to over worry or google too much, talk to your neurologist.
from what I understand from your post mnd is your worry not something that has been said to you. It is very easy to think dark thoughts with an ms diagnosis, I needed anti depressants in the beginning to cope as have many others.
I had an appointment yesterday with a Neurologist, he gave me a full examination. I have the twitching in my legs too and he ordered another MRI and an EMG which he wanted pushed to rule out anything sinister but he also mentioned Betaferon and Lemtrada for medications after the next appointment.
I know that Im catastrophising (even if I cant spell it). But catastrophy is what Ive been served up or served my self up in the last 12 months and so more of the same doesnt seem completely far fetched. But Im trying to stay as calm as I can. And the forum does help and Im thinking of going along to the local support group. Hope u are ok.
They don’t tell you much here, I am in Ireland. I had to get a private consultation as I was waiting over a year and he stopped taking referrals last October due to demand and I’d have to wait another year at least. I was encouraged to hear him talk of medication
Thanks Poll. Hope u are doing OK. There is a special fear when you are somebody who worries a lot over little things and then suddenly u have a whole bucket full of big things to worry about. Im trying to slow my brain down but it pretty much has a mind of its own atm.
I have an appointment with the neurologist at the local hospital but she was not very good when I saw her before. I told her about the eyes problems and how the optician had said that they were not in the eye but in the brain. And she said I would need to see opthalmology at teh hospital, as she did not cover eye problems. A neurologist who doesnt cover brain originating visual disturbances! In the end I had to insist on an MRI through the GP.
Harry, check out this link from top of the Header above…it will give you an idea of what’s available and some idea of what to expect. I’m in Ireland too but am lucky to have a Neurologist I see every 3/4 months.
Don’t hang about. Take those drug treatments as soon as they are prescribed!
Try not to worry, you are doing everything you can right now to put your health forward, it’s easy in the beginning and pre-diagnosis to get worked up and read far to many articles which aren’t helpful.
Everybody’s MS is different, you will have seen there are different categories of MS, but within that all of our symptoms are different and presentation. You will if and when diagnosed, learn about your symptoms, triggers and how to manage them. Demylenation Disease does tend to indicate MS, although there are a few other ailments that can present lesions also. MS diagnosis as a whole can take a while as it tends to be more about ruling out other diseases which is very important, be patient.
To reassure you, untreated and in relapse, my legs suffer the most. I have constant twitches that never leave and periods of heavy numbness and electrical pain, my biggest relapse pre diagnosis this lasted 3 months. Medicated and out of relapse, I still twinge, nowhere near as much, but there is nerve damage from untreated relapses which makes itself known. MS is part of my daily life and over time I have become accustomed to it and learned to try and exist alongside it.
I have been where you currently are and a lot of other have too, MS diagnosis for me was a shock, I had no idea what was making me ill and went along with the doctor’s advise it was a B12 deficiency for far too long. Try to relax between appointments, eat well, sleep lots and do things you enjoy until you know where you are.
hi Rupert,the glasses are not rose tinted by the way lol.so if it is m s you just have to get your head around it ,don’t be worrying about things that you can’t change.there must be other things in your life that you can change.having m s isn’t the be all and end all (in my mind now). It’s taking me a long time to get my head round it.in fact it took a full blown meltdown to finally accept .in fact when I think back I don’t think I will ever forgive myself for the things I said to my hubby.all it took for me to get a grip,two days later,was my grandson who is two shouting "granny Mike the knight"as he stumbled in the front door.it might seem a little thing to some but it can be things like this that can bring a ray of sunshine into your life.