I am not sure if anyone can help, but I am feeling a bit scared about the possibility of MS.
My symptoms started suddenly but are very mild in comparison - started as pins and needles down one side when I woke up, and wrong messages (eg hot things felt cold, the slightest touch felt painful) and then ended up as numbness from about my ribs downwards (when my doctor stuck a pin in it felt like the end of a finger instead). They are much better now in that the numbness has gone, and I have tried to ignore the MS possibility that has been raised by my doctor and confirmed as a possibility (but only a possibility) by the neurologist. I have been for one MRI and have been asked to go back for a second of my brain and the cervical part of my spine as the first one showed some “increased activity” in places (which I still don’t understand really - increased activity of what?).
I know this is all quite minor but for some reason I am not coping very well with it, and am paranoid about waking up with something new having gone wrong. To put this in context a bit, my youngest child (daughter) has a rare chromosomal problem, sufferers of which usually die within a few days of birth (which is what we were told on diagnosis at 3 days old). She is 2 years 4 months old and a delight - it hasn’t all been easy - 2 operations, and hospital admissions about once a month all of last year including an intensive care trip for pneumonia. She has developmental delay but is making great progress.
Why is this relevant? Because I am coping with all of that, we have got on and created a life which is as normal as possible, partly to give our eldest (son) as normal and happy childhood as possible, and to help him grow up securely so he can cope if the worst happens. I work part time (self employed), we go on great holidays, we do normal family things.
But as soon as MS was mentioned I have gone to pieces! Really to pieces. And yet it might not even be that, and my symptoms are really trivial compared to many people’s.
So any advice, help, words of wisdom would be much appreciated :).
You certainly are having a rough time. I’m no expert but just wanted to let you know that you arent on your own. If you look at most of the information you will see that ms isn’t the end of normal life. You appear to be very strong and there’s no shame in feeling scared. Every one has felt that way. Please see your GP if it’s disrupting your life, and I just wanted to say that I admire your strength and wish you luck. This forum is very helpful.
The worst time really is limbo. If you do get diagnosed it makes it easier somehow because then you can face it head on and you know what you are dealing with. I honestly felt that the worst time was the part from my first episode, when the neuro told me to go away and forget about it (as if!) and it would be 6 months, a year, maybe 5 years or maybe never before anything else happened. Do they really think it’s not going to play on your mind every single day?
You are obviously a strong person because of all that you cope with in life already. Cherish your family, focus on them, and do your very best to push these thoughts to the back of your mind. In the end, I coped by allowing myself 10 minutes a day to dwell on them and then put them away and got on with my day. That way I acknowledged my fears without allowing them to take over my whole life as if I hadn’t done that I would find myself paralysed with fear at random times of the day and I couldn’t allow that to happen.
If the worst happens, and you do get a diagnosis of MS, it is not the end of the world. Many of us (myself included) hold down jobs, take holidays, have days out with family, and lead full and active lives. We have to make the odd adjustment but we still live our lives and if anything it makes you more grateful for all the good things you do have.
“Increased activity” usually means that there are some areas that are brighter on the scan that might be expected and these usually mean lesions, i.e. spots of damage. The fact that this is the first time something like this has happened to you means that there are a number of possible causes, including the chance that this is a one off attack (google ADEM, e.g.) and you will never have anything like it again. I’m not saying this just to reassure you - it really is a strong possibility that once this passes, it won’t happen again.
The very best thing you can do is get on with life as normal, enjoy your children, go on holiday, do family things, etc. If you are still struggling with symptoms, then make sure to get your priorities right, e.g. dust is for drawing in! What will be, will be, and worrying about things that might never happen is just a distraction from making the most of now.
Even if it isn’t a one off thing and turns out to be MS, it absolutely isn’t the end of the world. The vast majority of us live long, happy and fulfilling lives: we still get to do all the important things and, although it’s tough at times, life really can still be good.
Hi, I spent a few years in limbo and then some more being told I probably did have PPMS. Last year I was told it is something else, with no cure nor treatment.
But back to you…it is a worrying time waiting for a diagnosis, but to have a very sick child added to that, must be a dreadfully anxious time.
Sounds like you have a lovely family and get along the best you can.
All I can say is that I hope you all manage day to day as best you can. and we are here when you need support and a place to vent.
I really do feel for you. It is the build up of problems that can sometimes get on top of us which cause increasing worry. I had cancer when I was 25. Then my first baby was born with Downs when I was 28. He had open heart surgery when he was a year old. Then he developed a rare cancer eye tumour (retinoblastoma) when he was 3 and at 5 he was diagnosed with autism. He is now 20 fit and well but hard work to care for. I have a neurological problem which is hard to diagnose which I am sure stress is not helping. I went to my doctor and explained that I feel really stressed due to the build up of major issues that I had to endure. He gave me something for stress which really does help. I really hope that you get some answers soon.
