Hi Abdntired, I had the same situation a few years ago when I was off with depression to which I wasn’t supported at all by the company that I worked for, before I stopped nursing altogether as the manager that bullied me made me loose my passion for it altogether. All I can say in hind sight is I would get the union involved straight away as mine would never have got to the NMC. If you ever want to talk I am here. Stacey
Hi there I’m 29 and for the past five weeks I have been really unwell. Flu like symptoms, episode of double vision amd lose of sensation on my right side which cleared, then my right eye vision started to deterorate … feeling extremely tired aching amd really bad headaches amd pressure. Finding it hard to do anything. Also not been eating well . I was put on steriods and my right eye vision isn’t as bad now. I had a mri which shows Demilanation patches of nerve damage . Amd bow I had to wait up to 6 months to see a neorolagist for a diagnosis amd treatment :-/. . I feel so unwell . They said to Try exercise amd think positive could have been worse and how I’m healthy young woman amd will live a long life but feel so unwell and so worried if anything else happens especially as iv got two young girls aswell. I’m finding it all extremely hard . As soon as i get treatment i imagine things could be better its just a horrible wait many thanks
Hi there I’m 29 and for the past five weeks I have been really unwell. Flu like symptoms, episode of double vision amd lose of sensation on my right side which cleared, then my right eye vision started to deterorate … feeling extremely tired aching amd really bad headaches amd pressure. Finding it hard to do anything. Also not been eating well . I was put on steriods and my right eye vision isn’t as bad now. I had a mri which shows Demilanation patches of nerve damage . Amd bow I had to wait up to 6 months to see a neorolagist for a diagnosis amd treatment :-/. . I feel so unwell . They said to Try exercise amd think positive could have been worse and how I’m healthy young woman amd will live a long life but feel so unwell and so worried if anything else happens especially as iv got two young girls aswell. I’m finding it all extremely hard . As soon as i get treatment i imagine thinhs could be bettwr its just a horrible wait for my neorolagist referred thats taking time many thanks
Hi Charallen
I won’t pretend to know a lot about MS , having only recently been diagnosed myself I’m still finding my way.
So you have had an MRI which showed demylation . Did they mention Lumber Puncture at any point? I am not sure why you are having to wait six months. I would have thought you would have seen a neurologist around the time of your first Scan.
You are young and diagnosis after a scan (sometimes scan and lumber puncture) usually only takes a few weeks.
A treatment plan I would hope would follow not long after.
I think you will have to keep on at them and don’t let this slide either through your GP or contact your local hosp neurologist dept
I understand the weight loss. I have lost a shed load of weight due to fear and worry but you have got to keep your strength up and eat. (Jings I should maybe listen to my own advice )
Do you have a local MS group that you can meet up with to get support face to face? .
Take care
Gee
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It was all being treated as optic nephritis so I was under a consultant in the eye department at the hospital it was them that referred me for a mri which I had done and showed that. And iv had steriods . They gave me the results and said that he will send mtly referral off which can take up to 6 months and then they will start do more tests etc. I wish someone could see me sooner so I can get the right diagnosis and treatment. Il ring my doctor in a minute to get an appointment to see why I have to wait so long . They haven’t mentioned anything about a lumber punchure. He said it’s not his area and a neorolagist will take over. It’s happened so suddenly. It’s been about 6 weeks since it all started .thank you for replying x
Ah I understand now . I was thinking you saw a neurologist for the scan.
Well I would still keep on at them. You could still be waiting 3months but that’s better than 6!!
Once you have some form of diagnosis you will feel better placed to look into treatments if that is required .
Keep your chin up !
Remember you can always message on here for support .
Thank you . I was told by my mother inn law about this site and does help there’s so much from other people. All thw symptoms suggest ms don’t they. I feel so rubbish woth it. Head is so sore . I woukd have thought after the mri they would of wanted get it sorted quicker to treat it and maybe stop it happening . I worry if anything else happens in the mean time. I just want to feel beer . It’s been so hard . Iv got two young girls amd it’s horrible seeing thwm wonder whats going on so I have to hide it as much as possible amd just tell them its a condition that’s makes you feel poorly sometimes but il be fine :-/. Waiting for doctors to answer at moment been waiting half an hour they are busy. I just want some more understanding of it all amd a treatment plan of some sort . My husband been off work because of all this . He’s planning on going back next week which I am so nervous about just incase something else happens and I can’t pick girls from school :-/ . But I can’t think like that as it will probably have it worse xx
The thing I have to remember that is no matter how rubbish this is making me feel it’s not life threatening it’s a condition that can be managed and live with it . So things could be worse just think that xx
Aw Charallen I know exactly where you are coming from believe me. You have no diagnosis so you are in limbo . You will have people who are saying ‘it will be fine don’t worry ‘ and although they are trying to help it probably isn’t helping much. . For me I have been diagnosed and i still feel in limbo but that’s probably because I like everything sorted immediately. I still await lumber puncture (which I’ve been told will be before Christmas) and then treatment can begin.
Anyway , if you are diagnosed with MS, then you are quite correct . It is a condition. It is not pleasant by any means but There are treatments (which may not have been available 10yrs ago) that is making living with this condition easier.
Some treatments will slow down the progression or in some cases may halt it for some time. Some treatments help with symptoms.
I have a friend who has MS (she is your age) and she starts Stem Cell treatment in Jan. This is quite an evasive treatment but the results look positive. X
Hopefully you get that done before Christmas and start treatment. Yes everyone says there’s a lot more nowadays which treats this condition which is good. It’s easy for the doctors to say “oh your young and healthy and wull live a long life” when you feel so rotton which weird things going on that’s hard to listen to :-/. I don’t know much about the treatments yet . So stem cell treatment is a good one is it? How long does it take for your lumber punchure results ? X
I think the Stem Cell treatment is possibly still in the trial stage but the results have been fairly positive so far. My hope is that with Stem Cell treatment there may be a potential cure… perhaps not right now but in the very near future. Maybe I am just kidding myself but hey We all need to have hope… putting that particular treatment aside there are other medications out there. It’s finding the right one and weighing up any side effects.
You are young (I’m 37 so I’m still classing myself as kinda young too haha!) and your head will be swimming with so much Unknown’s at the moment.
Write everything down (like a diary) … symptoms , thoughts , fears so that when you have an appt with your GP or at the hosp you have it infront of you. When you chat to doctors it’s easy to leave things out and get flustered or burst into tears.
LP results will prob take a week or two but as it’s Christmas round the corner, your guess is as good as mine on how long it will take.
37 is young . Il write it all down as your right it’s easy to forget to ak things amd juat break down that’s what I was like before my mri as I was thinking thw absolute worse it was terrible. But at least now I can push for diagnosis amd treatment amd things can be relitivly normal I suppose . From what they told me stress can make it all worse so just got to try stay as calm as possible that’s very hard. Good luck with your lb amd treatments. I will message as soon as I know any more or just if I feel I need to message x
Thanks Charallen.
I’ll keep you posted too. Keep calm , think positive thoughts and if you need to talk about it then do so. Whether that is to family / friends / the forum/ me …
Take care x
Gee and Charallen
You have both been doing a sterling job of supporting each other.
Charallen, what Gee said is exactly right. When you finally see a neurologist, they may want to redo MRIs and possibly a lumbar puncture and maybe other tests. If it is MS, then you are absolutely right, there are many treatments available which aim to reduce the number and severity of relapses, so will keep you mobile and relatively unaffected by MS for years to come.
It’s definitely a good idea to start keeping a diary of symptoms. That will help when you come to see the neurologist.
You could ask your GP to also refer you to a neurologist, but ask if it can be an ‘urgent’ referral. Since you’ve already been waiting for some time and have had an MRI suggestive of demyelination, I suspect the GP may agree that the sooner you see someone who can prescribe disease modifying drugs the better.
You are both young, and given some decent drugs to ward off relapses, you’ll have a good life ahead of you. Your attitudes are exactly what’s needed to get you through the next weeks and months. That doesn’t mean a good bout of swearing, self pity and a bit of ‘why me, it’s not sodding fair!’ won’t help too.
Sue
Hi there :-), they have sent a referral for a neorolagist but said can take up to six months :-/ . I’m going to see doctor to ask if they can hurry it up in anyway. It’s been really tough and confusing just really need to see a neorolagist now . It does help talking on here as I know so little about it all. Il be off the steriods next week and the doctor said I should feel much better then really hard to imagine feeling ok again . I’m just trying to keep stress low which they said will make it worse .thank you for your message x
I loath seeing my neurologist. They are not that helpful, because it is an incurable disease.
It’s more about managed decline than treatment, and the neurologist just orders a new MRI every few years to plot
your decline and decide whether you are PPMS or RRMS or SPMS.
I have found the MS Trust is more helpful than my neurologist, I just look up any new symptoms and ask my MS Nurse or GP about tablets or physio or other help.
Signs and symptoms
Managing relapses
NICE: Multiple sclerosis in adults: management
One thing that really can make you feel crappy is steroids. That is probably adding to your low mood. I’ve often felt like I’ve been pelted with rocks after steroids, it’s like all your muscles feel bruised. But a few days afterwards, you should start to feel a bit better once you’re off the steroids.
Definitely see if the GP can speed it up at all. They may not be able to, but it’s worth a try. The fact that you are a young mother ought to make them hurry it up a bit (not that they will necessarily consider this!).
All the best.
Sue
Aw Fay, this is all well and good, but first you need to actually be diagnosed before you can start self managing your MS.
And let’s face it, if you are young, recently diagnosed and want to ward off disability, you need neurologists to prescribe DMDs. You and I might be in a different place to the un/newly diagnosed, but for most people newly diagnosed with RR/active disease, drugs treatments are necessary to try to stay as active and mobile for as long as possible.
If you’re undiagnosed, you need to jump through all their hoops before even being referred to an MS nurse or a physiotherapist.
Sue
Thank you for your message. Yes my whole body feels bruused amd sore amd very tired amd head pressure is bad. I will be off steriods soon so il see if that helps.i have the doctor phoning me tomorrow to discuss it more. It all depends who you see aswell. Iv seen so many doctors some of them just told me go home amd rest and only a few actually done something. And those ones that actually picked there phone up and got me in on steriods said it should have been done ages ago and not just sent home. I also had a few referrals sent off over past 6 weeks for a urgent mri two of them were lost .it was only when I got in contact with the liason people at the hospital that my mri got put through as she took it down herself . But iv had it now anyway. So just got to hope they can hurry up my neorolagist referrel amd just wait I suppose . Thank you for messaging me . You have all been really nice and it does help because I have been so scared with it all bit just doing this helps for advice etc x