Am 99% certain I have MS, neuro’s letter to my GP mentions demyelination evident from cervical scan etc. Am having lumbar puncture on Tuesday, having had two MRIs of my head last week (one with contrast agent). Main symptoms are drop foot, difficulty with balance and lack of fine motor skills and coordination down my left side. I walk with a limp and find it hard to use cutlery in my left hand.
Just felt like getting in touch with others who suffer from the same, as I’m feeling very nervous at the moment. I am an otherwise healthy 42 year old who goes to the gym 4 times a week and used to run lots, including marathons; have not been able to run for the past 4 years as I just kept tripping over and injuring myself.
I’m a glass half-full type of bloke and don’t want to get all maudlin, but really need to communicate with others who might know how I’m feeling. In particular, I’m becoming increasingly paranoid about every sensation in my body. It’s as though my insides have been ‘invaded’. Is this normal?
Not looking forward to Tuesday, but hey ho.
Any advice as to how to inform my children of the MS (they’re 7 and 10), if and when it is officially diagnosed, would be much appreciated.
Hi your situation sound familiar to mine. I had a sort of attack 4 years ago with load of funny symptoms and recovered well. But months later started to trip up on my right leg,. Spasticity is increasing in my calf making foot flexion difficult. I had a MRI and a lesion was seen in cervical spine. The brain scan was clear. The first neuro said it was damage from radiation treatment I had in 1990. A year later I saw another neuro who rescanned me and still only one lesion was seen on cervical cord. Brain still clear. He then sent me for a lumbar puncture saying that if it was positive then he was going to diagnose MS. So I was 99% sure it was MS and was surprised when the LP came back negative for OCB bands. I am a wait and see case as he cant diagnose me with one lesion and negative LP. Next time I go back I am going to ask for tests for other things like Lupus and sjorgrens which can cause cervical lesions.
I am 48 with 4 children (20, 19, 15 & 15) and they just know that I have a problem with my leg. They asked was it life threatening and when I said no they seemed happy enough. It is things like cancer which seems to freak kids out the most I think.
Hello and welcome to the site The way you are feeling is perfectly normal and, before all this settles down into some sort of normality, you will no doubt experience many more. Getting a diagnosis is one hell of a shock and turns our world upside down, even when we’re kind of expecting it. All we can do is go with the flow and take it one day at a time. There’s time enough to learn all about MS and how best to manage your symptoms. And time and experience teaches us that it’s not actually the end of the world - life may be different, but it can still be good. As far as telling your kids goes, I recommend the booklets that the MS Trust do. They are free to download or order as hard copy. I think the MS Society does one too - have a look under publications on this site. In general, kids adapt to most things as long as they are kept informed. My two were very young when I was diagnosed so I just told them that mummy had a bug that made her very tired and clumsy. I left the details till they were older. Children know something is going on and finding out it’s MS can be a relief so it’s important to tell them. I hope the remaining tests go well and you don’t have too long to wait for a definite answer. Karen x
Hi Just wanted to say hi. With regards to your trepidation about Tuesday, I had my LP done by two trainee doctors !! It was absolutely fine. A sharp scratch when the local went in and a wet feeling when they swabbed with iodine and that’s really all I felt. So please don’t worry too much. Xx
I am sorry that you are having such a difficult time. There isn’t much to be said for the joys of being in limbo, because when you don’t know for sure what you’re dealing with, there’s not much to get to grips with. I hope you get some answers soon, so that you can start to scope things out - that can really help give back the sense of control that can feel sadly lacking at times like these.
The best place for anyone to start finding out about all aspects of MS is the main part of this MS Society website. There’s a great deal of good information, clear and reliable. You asked about telling people, particularly your children - here is a link to some stuff specifically about that: http://www.mssociety.org.uk/ms-support/emotional-support/living-with-ms/telling-your-family
Some people want to be well prepared for any possible dx by reading up on these sort of things first, others prefer not to guess before they know, and leave it alone until they’re sure. Some people bury their heads in the sand, others bombard themselves with an overload of information until their heads are spinning. Everyone’s different, but most of us settle down quite quickly into the right balance for us between getting all the information and just going with the flow and letting things sink in gradually. There are no right and wrong ways of doing this, and your own instinct will be your best guide on what is right for you.
I hope the LP goes well - mine was absolutely fine and I think most people find the same.
Oh and yes, absolutely everybody gets paranoid about the slightest little ache and pain at a time like this. Perhaps the mind feels a bit as if it’s been caught napping when possible MS appears out of the blue and is determined not to get fooled again, so it sets the anxiety alarm to mega sensitive! But this passes. It’s all part of the adjustment process.
Finally, if it does turn out to be MS, it’s bloody awful news, obviously, but it is not the end of the world. It really is possible to make a good life with MS.
To be honest I’ve been struggling for the past six years with mobility issues, and have not been able to tie shoelaces easily or hold heavy plates with my left hand for almost as long. The sooner I get some sort of definitive diagnosis the better, even if, as I suspect, it’s pp ms.
It’s hard not being able to teach my lad how to take a drop kick or insisting I go in goal during a kick about because I’m, err, ‘knackered’, when I actually feel full of beans. Or convincing the folk down the gym that, actually, I cannot run anymore. Full stop. So please stop banging on about how I should enter the club triathalon, etc…
Or feeling very self-conscious when walking to where the gents are in a restaurant because I’m petrified I might trip and smash into somone’s table, or having to give a presenation at work where my leg starts twitching so badly I have to start walking around manically a la John Cleese from some Monty Python sketch.
Or having to smile politely every time someone says “ooo, what have you done” every time they see me…walking.Rant over (had one too many glasses of Rioja; I’m sure ms affects your tolerance)
Will let you know whatever they decide I have. Just so long as I’m taken away from this dreadful state of limbo.
A wry smile and some nodding while reading your last post - been there, done that (or similar) and that’s including the one too many glasses of wine even though I’ve had less than normal.
You never have to explain on here - we all understand.
Something that neuros and many medics don’t understand however is the sheer relief of knowing wtf is going on and having an answer to all those looks and questions.
Please ask your GP or neuro for a referral to neurophysio. The fact that you are fit and (relatively) strong will stand you in good stead - keeping you that way for as long as possible is the goal and they can help.
And when you see the neuro, make sure to ask about meds to help with your symptoms. That twitching might be reduced a lot with the right med for example. (Neurophysio might be able to help with it too, depending on what’s causing it.)
Sounds just like my husband hes 47 and he has been going hospital since 2000 for uveitis had mri back then was clear in march 2011 husbands health took turn for worse ,eye sight gone both eyes only side vision remains ,opthalmologist stumped as they thought uveitis wasnt that bad and should be able to see more than he could , lost lots of weight about 4 stone.He only weights 9 stone i am heavier than him lol he had stomach pains opthalmologist was concerned as had prevous tests done with gp and found nothing.They sent him for mri in sept 2012 and results showed something on his brain.He had appointment in february2013 the neurologist said after many questions and examination he was sure he had ms and was sending him to another hospital to see his fellow worker who specalised in ms.He has apointment in april 2013 find out what he says soon.My husband has got worse he had problems with his leg too he nearly falls over it it twists and pops and kicks on its own.Most of tremors are on right side but over last couple of days he is getting it in left hand too.This is quite worrying as that was how it started on the right side.His symptoms are not going away in fact he gets stranger ones as time has gone on.He was always very active he loved to walk miles and i used to tell him to slow down.Now he tells me to slow down and has to find a bench even for short walks.He could sleep for england and regularly i find him asleep in the chair .Its sad as we have two little kids and he just hasnt got the energy to do things anymore xx julie
The way you are feeling is perfectly normal and, before all this settles down into some sort of normality, you will no doubt experience many more. Getting a diagnosis is one hell of a shock and turns our world upside down, even when we’re kind of expecting it. All we can do is go with the flow and take it one day at a time. There’s time enough to learn all about MS and how best to manage your symptoms. And time and experience teaches us that it’s not actually the end of the world - life may be different, but it can still be good. As far as telling your kids goes, I recommend the booklets that the MS Trust do. They are free to download or order as hard copy. I think the MS Society does one too - have a look under publications on this site. In general, kids adapt to most things as long as they are kept informed. My two were very young when I was diagnosed so I just told them that mummy had a bug that made her very tired and clumsy. I left the details till they were older. Children know something is going on and finding out it’s MS can be a relief so it’s important to tell them. I hope the remaining tests go well and you don’t have too long to wait for a definite answer. Karen x