Hello,
I'm very new to all of this so apologise in advanced. I don't know we I'm here, I just think I want some reassurance. I don't want to give too much away because I don't want anybody who knows me to know anything yet. But I'd like to share my story.
I recently had some symptoms which mimicked a stroke, numbness down one side, blurred vision, memory loss and difficulty speaking, I was taken to hospital by ambulance and admitted to the stroke department. They then gave me a CT scan and an MRI scan followed. After around a month of still feeling shocking, no energy, sleeping after very little activity and a constant headache, with around 5/6 less severe relapses of the initial incident, my GP told me that my scan had shown I have MS. I was mortified, pictured myself in a wheelchair losing control of my body and ending up being stuck in a useless body going crazy.
I then found this website and it all seemed to make sense... The numbness in my leg etc and then unrelated symptoms... I was being tested for glandular fever 6 months ago as I just have no energy at all and I'm always ill, I get water infections at least once a month and lose some control of my bladder, I suffer with IBS. I then had an image in my head that my life would actually get better, that all of my ongoing problems would be explained and I'd understand what was going on with my body.
So for around 2 weeks I was feeling positive, my symptoms still came and went but I didn't panic, I had an answer. Then I saw my neurologist, he said that the scan showed three or four patches where some change has happened in my brain, but it isn't severe enough to point to MS, if I had MS he said it would be much worse, but surely it could be the early signs?! He couldn't tell me what it meant but said that he thinks I've just had a migraine and brushed everything off. He's willing to do some extra scans and an eye test to see of anything shows but has basically written it off.
I feel like I'm right back at the beginning, I don't particularly want to have MS but it gave me some kind of answer and peace of mind. The stress has made my speech shocking, I stutter constantly, cannot think of the right word, my head just seems to be working 5 seconds slower than it should be, my numbness is now coming and going more, I'm so tired, im sleeping for 15 hours each night and I've got a constant headache.
I don't know what I'm expecting from this, I just can't seem to cope at the minute, I'm spending most of my time sat crying. I need to be positive but I'm finding it so difficult.
Thank you to anyone who has read to the bottom, I appreciate you listening to my waffle,
Dot
I'm very new to all of this so apologise in advanced. I don't know we I'm here, I just think I want some reassurance. I don't want to give too much away because I don't want anybody who knows me to know anything yet. But I'd like to share my story.
I recently had some symptoms which mimicked a stroke, numbness down one side, blurred vision, memory loss and difficulty speaking, I was taken to hospital by ambulance and admitted to the stroke department. They then gave me a CT scan and an MRI scan followed. After around a month of still feeling shocking, no energy, sleeping after very little activity and a constant headache, with around 5/6 less severe relapses of the initial incident, my GP told me that my scan had shown I have MS. I was mortified, pictured myself in a wheelchair losing control of my body and ending up being stuck in a useless body going crazy.
I then found this website and it all seemed to make sense... The numbness in my leg etc and then unrelated symptoms... I was being tested for glandular fever 6 months ago as I just have no energy at all and I'm always ill, I get water infections at least once a month and lose some control of my bladder, I suffer with IBS. I then had an image in my head that my life would actually get better, that all of my ongoing problems would be explained and I'd understand what was going on with my body.
So for around 2 weeks I was feeling positive, my symptoms still came and went but I didn't panic, I had an answer. Then I saw my neurologist, he said that the scan showed three or four patches where some change has happened in my brain, but it isn't severe enough to point to MS, if I had MS he said it would be much worse, but surely it could be the early signs?! He couldn't tell me what it meant but said that he thinks I've just had a migraine and brushed everything off. He's willing to do some extra scans and an eye test to see of anything shows but has basically written it off.
I feel like I'm right back at the beginning, I don't particularly want to have MS but it gave me some kind of answer and peace of mind. The stress has made my speech shocking, I stutter constantly, cannot think of the right word, my head just seems to be working 5 seconds slower than it should be, my numbness is now coming and going more, I'm so tired, im sleeping for 15 hours each night and I've got a constant headache.
I don't know what I'm expecting from this, I just can't seem to cope at the minute, I'm spending most of my time sat crying. I need to be positive but I'm finding it so difficult.
Thank you to anyone who has read to the bottom, I appreciate you listening to my waffle,
Dot
it is awful being in limbo, so i understand why you are upset.
see your gp and explain how the lack of any diagnosis is upsetting you.
tell your gp about any new symptoms.
this is because your gp will enter them on your medical records.
will you be seen by your neuro again?
have you been given a telephone number for him/her?
meanwhile there are a few things that you can do to relieve the worry and upset.
mindfulness meditation is really helpful. your gp may be able to refer you to a course but if not there are a lot of mindfulness materials that you can download.
meditation doesn't mean sitting in a lotus position (if only!) it just means that you concentrate on your body, bit by bit.
it doesnt take long. i have the sessions on a MP3 and use it as and when needed. mine has a choice of short version and long version but neither takes more thn 30 minutes.
now for your bladder. you can self refer to a bowel and bladder clinic or ask your gp to refer you.
the nurse at these clinics are marvellous. they take the embarrassment out of it.
the nurse will scan your bladder (like a baby scan) and see if you are retaining urine.
you will be talked through what you need to do and may be offered catheters.
don't go thinking "shock/horror" because they really aren't difficult to use. the security of knowing that your bladder has emptied fully before you go out is brilliant.
really with ms or without ms, symptom management is the key.
ask on here if you want advice on another symptom and keep your gp in the loop.
carole x
I'm seeing the neurologist in 6 or so months, he said if any of the tests highlight anything he will be in touch but as of yet I haven't had any appointments for the tests. My GP is really concerned and rings me each week and I feel that I am able to talk to him. After I wrote the message on here I had a look through some of the other posts and there are things I experience that I didn't even think to link to it, for example my eyes seem to play tricks one me and I see things on the right hand side, like spiders running down the wall.
I just feel alone, I don't want to talk to my family because I feel like I'm being a drama queen. My partner is great but I can see him struggling with the stress and don't want to make him worse. I feel so low, I've been depressed before and don't want to go back down that road, but I can feel myself being dragged. I'm not at work and the time sat at home is giving my mind lots of time to think about it all. I've tried going out and seeing friends but I can't seem to follow a conversation with them and end up with a really bad headache, I have to come home and sleep.
I think that last week I had the stupid idea that it was all linked and I'd be able to treat the cause of everything and my symptoms would just disappear, now I feel like I'm faced with a long journey and no symptom relief at all. My GP has put me on beta blockers now, so hopefully they might do something.
Thank you for listening
It is also OK to be feeling beaten up with all the is it/isn't it about MS. All change, even good change, is a strain, and it is no surprise that a seeming reprieve from what had looked like an MS dx has left you feeling no better.
This is all very tough stuff. No one takes this kind of thing in his/her stride, believe me. Please don't be hard on yourself. It can sometimes help to stand back and think how you would advise a dear friend in your situation. My guess is that you probably wouldn't be telling him/her to get a grip and pull him or herself together... See what I mean? Please try to be your own kind friend and be gentle with yourself. You will find your way through all this, I promise.
I don't think that you are now right back at the beginning at all. You have documented strange stuff going on. You have an abnormal MRI scan. You have other tests in the pipeline, so you are not even at the end of this phase of investigation yet. All I would suggest is, please try not to think too far ahead: you don't have enough information to make that useful. Just try to plod on and take things one step at a time. When all the test results are in, then it will be time to take stock, and even then it will more than likely be a case of resigning yourself to a period or waiting and seeing and hoping that whatever was mysteriously causing the problems has gone away. All hard on the nerves, I know. But one can't really force the pace with these things.
Also, Carole's suggestion about keeping the GP in the loop is a very good one.
Hang on in there!
Alison
I'm expecting a long process of finding out what's wrong, and I'm realising that treating my symptoms at the minute is the priority to get me back on my feet. I guess taking things one step at a time is the key and not trying to rush things forward by being impatient.
Thank you x
I was told by a neurologist he wasnt sure if i had MS or not this was going back several years (i was diagnosed about 4 years later). But on a visit to hospital for something else Neurological, it had on my notes I was seeing a certain Neurologist for my MS lol......before my diagnosis lol.
IF it is MS it will present itself again. It does sound scary what happened to you, and something obviously did.
Now I would take a deep breath for now and enjoy the holidays with your family.
Diagnosis can be a long road. You have a fabulous GP who believes in you which is so good.
It could have been an isolated incident, and the neurologist is just being cagey. They cant I believe give an MS diagnosis officially unless you actually match all the criteria, but they can leave it on your notes as possible, which I expect he has done. No point in worrying you if its not necessary if that makes sense.
Try to relax and just enjoy yourself for now. Stress is so bad for you. Sending you massive hugs, things will get better you will see, just have some faith. xxxxxxxxx
I've started getting really bad neck pain as well, like I've slept funny but it's all day every day, not sure if it's relate or if it's just stress but i can't seem to shift it.
Thank you for your lovely message, it's lovely knowing that there are people I can actually talk to about it all.
Before my diagnosis i was offered 3 days in hospital with I.V. steroids, but when i was ready to go after a bad relapse of whatever it was, they couldnt do it as I had another UTI, and my bone scan was not very good....
I get neck pain a lot it just comes and goes, sometimes i could scream with it, in fact there is a post on everyday forum, about ear pain and neck pain......mine will be horrible and i feel like screaming, then it just goes lol.
With relapses you find you can have new symptoms which should last over 24 hours, and sometimes longer, and will go eventually, sometimes you get old symptoms come back. Its a rollar coaster ride.
I just so pleased you have such a great GP.
Try not to stress too much though hun, as it will make your symptoms worse which can be an exacerbation rather then a relapse ok.
Enjoy your Christmas. Without forums I would have been a right old state lol. Big hugs. xxx
T
I get UTIs all of the time, didn't even realise it was a symptom until I came on here, it's crazy the things that link together!
I'm out of bed today and I'm going to attempt to go out, I hate giving in!!lol
Thank you so much for taking the time to talk to me, you've helped so much! I don't feel so alone anymore, I know I'm not the only one going through it.
Have a lovely Christmas and new year, I'll be thinking of you xxxx
there's always someone on here to help answer your questions, so don't feel that anything you're worried about is silly. I've always felt a bit clearer once I've written everything down, sort of puts my thoughts in order! It certainly sounds like you've got a great GP who will listen to you, many don't. I'm pleased the steroids are starting to work for you. I'm wondering if a short course of antidepressants may help to get you through this particularly bad time, they sometimes help to control the pain as well brighten your mood? Having lots of UTI's will be making you feel really low too, but I expect you're already getting that sorted.......bit of a catch 22 thing.......feeling low, get UTI.....get UTI, feel low.....
Take everything at your own pace & be kind to yourself