Hi everyone…I’m a very scared newbie to the forum and a little bit unsure of what is happening to me at the moment!
Just over a month ago I went into hospital for an operation for a routine shoulder op with General anaesthetic and a nerve block and since then things have gone from bad to worse! :0(
Since I dislocated my shoulder 3 years ago, I have had problems with my right arm, which I put down to nerve damage but, since the operation I have had problems with my balance, eyesight, headaches,high blood pressure, dizziness and tingling all over my body and to be honest, I’m petrified.
I’m 36 years old, apart from the tingling in my arm, have never experienced anything like this before and don’t understand it. My GP referred me to the hospital informing me that I was showing MS symptoms which scared me to death. I spent a whole day in hospital being poked and prodded and had my bloods tested but was told that the doctors could not find anything significantly wrong. I was sent home with a 3 week course of aspirin and told that I would be sent a neurologists appointment in due course.
I have an appointment with the optician tomorrow, I know I’m really jumping the gun but I also know something is wrong. I’m not a hypochondriac, I’m hardly ever ill. I’ve been in hospital for the birth of my son and last saw my doctor in 2009. I have zero patience and from what I’ve read from ‘Dr Google’ diagnosis can take ages. Because people around me, can’t see the symptoms, they think I’m fine but the dizziness and pins and needles is driving me crazy!!
hi beth, welcome! and never apologise for the rant, they are always allowed on here i was the same when my first symptoms came along, i just knew something was wrong because i had never experienced anything like it, even now when i have a definete diagnosis of vit d deficiency at the least, i just have a feeling that it is more, i know its a horrible feeling! diagnosis can take ages but i believe for some people on here it has been relatively quick within a year or few months i think, tho don’t quote me on that im sure someone in that situation will be able to give a more accurate answer. in the meantime, have some (((hugs))) and know that you’re not alone.
Thank you so much for your reply. I feel like I’m going mad at the moment!!! I’m trying so hard to be positive but when I’m on my own, am crying…a lot!!! It’s so difficult when you just don’t know what’s wrong and you are not getting any answers quickly!!
I’m a Special needs teacher and am back in school next week. I adore my job, but right now, feeling like this, am absolutely dreading the new term. Time to plaster the smile on the face and be as positive as I can about what is possibly ahead I guess!
Thank you so much for your reply. I feel like I’m going mad at the moment!!! I’m trying so hard to be positive but when I’m on my own, am crying…a lot!!! It’s so difficult when you just don’t know what’s wrong and you are not getting any answers quickly!!
I’m a Special needs teacher and am back in school next week. I adore my job, but right now, feeling like this, am absolutely dreading the new term. Time to plaster the smile on the face and be as positive as I can about what is possibly ahead I guess!
Awww, is there no-one you can confide in at work, to make things a bit easier maybe? Have you tried phoning the ms society helpline? i phoned them for the first time yesterday, i was terrified but i cried down the phone at them, and it was definetley a weight off , even if only a tiny one.
Hi Beth Sorry to hear you are having worrying time. It’s so horrible not knowing whats causing symptoms. I now have a dx but remember those feelings well. The length of time getting a neuro appointment can vary so much, so hang on in there. I work in a school too and have been grateful for the holidays to get my head around my dx. It is hard to try and be yourself with so much going on. Hope the new term is not as bad as you think. The children tend to have a way of making you smile…most of the time! : ) Mish x
My boyfriend has been amazing…he’s very practical and says there’s no point in worrying about something until we know something for definite which I know is right but it doesn’t make these symptoms or the fear of the unknown any easier!
I don’t really want to speak to people in work at the moment…I have so much responsibility and I don’t want people to think I can’t cope. However, I think I’m going to have to take this one day at a time based on how chronic the pins and needles are and how bad my dizziness is. You are right Mish, children are amazing…and that’s why I’m so gutted to be going back in this frame of mind as I normally can’t wait to get back to work after the summer break!
I’m hoping the optician can shed some light tomorrow…I don’t think it’s Optic Neuritis (I’ve been doing way too much googling!!)…I don’t have any pain in my eye but there’s definitely something not right.
I can understand about not speaking to people at work, I’m applying for new jobs at the moment and am flat out refusing to tick the " i would need adjustments for interview" or any problems type boxes on forms. I just thought maybe there would be someone who could help you if needs be. Glad you have a great boyfriend, you are right about taking it one day at a time, thats what im trying to focus on doing too.
Hi I worked in a day nursery and since Nov last yr I have not been able to do the job!! Totally has turned my life upside down, and I am not sure what to do. No dx yet, waiting for test results. Have had a few good days, however today I have felt dreadful, very weak and ache and dizzyness again.
Neurological symptoms are very scary, but if you do a bit more googling (:-)) you’ll see that there are actually hundreds of causes and that some of these are treatable (e.g. vitamin deficiencies and migraine) and others are one-off attacks that never return. So, what I’m basically saying is that your boyfriend is spot on - time to accept that something is going on, but that until you know what it is, there is no point in worrying about it. (It’d be a bit daft to be having sleepless nights if it turns out that all you need to do is have some physio or take some pills for a couple of months or something :-))
As far as MS goes, even if this was an MS-like attack, it still may never happen again. There is something called CIS (clinically isolated syndrome) which is basically a one-off attack of MS. Given that the hospital couldn’t find anything wrong with you, chances are that, even if this was CIS, you would never have another attack.
So, deep breaths, no more googling (after looking up the above!) and one day at a time until your neuro appointment when hopefully the neuro will be able to work out what’s going on and get you the right treatment to make it go away
Thanks Karen…Your words have helped a lot…I’ve got a bit down and despondent about the symptoms so I’m going to look up CIS and then try to step away from the computer…easier said than done from a self confessed internet junkie!!!
I was told by the hospital that the dizziness I was suffering could be from a reaction to anaesthetic and the headaches and pins and needles could be anxiety…but the GP saying MS type symptoms has sent my mind into overdrive!! There’s a definite eye problem as my vision is blurry in one eye but four different doctors shining lights into my eyes said that my eyes ‘look’ healthy - I guess the Optician will give his opinion tomorrow.
I will try my very best to stay positive and to keep smiling!! Thanks again for taking the time to reply. There are some really lovely people on this forum!
Hi Beth, we have lots in common, I am 36 too, I also have only had one episode and am not yet diagnosed and I am convinced I have an eye problem too…but not sure what.
For me it’s my left eye which has a constant pain behind it. Neuro said it’s not ON so am off to see GP next week to see if I can get referred to an opthamologist (sp?), see I have been googling too!
Hope you get some answers soon, but this does seem to be a long road. I had my first episode in December when I have numb legs with pins and needles, dr’s diagnosed Transverse Myletis (CIS). Have you had any scans yet?
No, nothing…I think the doctors are still convinced its to do with the anaesthetic from the operation as I don’t have any numbness just the pins and needles and the eye problems, headaches, dizziness etc…I was inclined to think this too as I was ‘fine’ before my op but as time is going on I think it’s more than that, although my blood pressure is sky high (160/90) which may be causing some of the issues because I’m worried sick!!!
I went to the optician today and they did various tests. He said my eyes look healthy but I have short sightedness in one eye…no sign of ON…I think if I didn’t have the constant dizziness combined with the pins and needles, I wouldn’t be as concerned but having the two and reading that these are early signs of MS is really hard to deal with, however positive a spin you try and put on things.
Hope you manage to get a referral from your G.P. for your eye problem. I think the not knowing exactly what’s going on with your body when you’ve alway been relatively healthy just pickles your brain…I wish there was just a test where they could say yay or nay…hopefully that will be the case…one day…
i was the same when my first symptoms came along, i just knew something was wrong because i had never experienced anything like it, even now when i have a definete diagnosis of vit d deficiency at the least, i just have a feeling that it is more, i know its a horrible feeling! diagnosis can take ages but i believe for some people on here it has been relatively quick within a year or few months i think, tho don’t quote me on that im sure someone in that situation will be able to give a more accurate answer. in the meantime, have some (((hugs))) and know that you’re not alone.