I am a nurse , new diagnonosis of MS, dont know what to expect when I go back.

Hiya   I think time off is a good idea as i'm sure those two little letters (ms) are in your thoughts constantly.

Fatigue is a symptom many of us relate to,and I would think its one of the main reasons for people making adaptations at work.

You have already found your shift patterns difficult, are you currently in a relapse...now you know what your symptoms have been?

It is usually a good thing to wait before seeing the professionals as it gives you time to get over the shock and to think about the answers or explainations you need.

Have you got an ms nurse assigned to you?

 You will know yourself when you are ready to face going back..and who you are going to tell. Being in the care profession as I am/was I think as part of your duty of care you will need to share the dx with your manager so risk assessment can be put in place etc.

Lots to think about so take your time and fire away on here. Dont forget the new diagnosis part is full of people in your situation aswell.

Take care

Pip

Thats a good manager then, and I'm sure on here you will find answers to many of your questions. 

They will also be real experiences from people who know what its live living aboard hms MS.

Day at a time.

Pip

Hi Mo-Jo,

Without question you need time to get the realisation of the diagnosis..

This was written by a doctor about his diagnosis; were all different but this will give you some idea http://www.mult-sclerosis.org/diagnosingms.html

The only legal requirement is that you advise the DVLA of your diagnosis.  This probably will not affect your need to drive.

Also I will mention as there is invariable a short window to make a claim.  If you have a mortgage see if your house insurance covers ‘critical illness;’ could mean a large cheque.

Last thing; as I don’t want you to be buried with info; there is responsibilities’ by law that your employers must adhere to this will explain somewhat http://www.equalityhumanrights.com/legal-and-policy/   You can contact ‘Access to Work’ if you need any help http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_4000347

MS Fatigue is horrible but remember MS is not a stop sign; its traffic humps.

Good luck

George

Hullo 'Mo-Jo'.

My name is Marcus (unfortunately my 'damned' initials are 'MS'!). I've had RRMS for 13+ years and at first I thought that they may have made a mistake - unfortunately not! My own Doctor has a close relation with MS and he divulged that he 'could get it'. I was a Director in the motor trade at one time of 4 garages. I went to university in Aberdeen and I am married to an Optometrist from Northern Ireland and we have one daughter aged 9. I am 56 and not working because I suffer from 'tiredness'. I used to play rugby and hockey, I swam and I have a black-belt in Tae-kwon-do - not any more. I used to jog along the beaches and 'other keep-fit' hobbies - not any more.

My one piece of 'advise' would be to pay attention to others with 'MS' and decide whether it is important or not. But what am I telling you for? you will know better than me? It took me a while (years) to 'admit to myself that I had MS' - the funny thing is that I tell people that I have 'MS' and they tend to show that they are sorry - but generally, it doesn't hurt! In fact when you are idle, you forget that you have it. There is no diagnosis for MS and nobody knows fully about it - but what am I telling you for? You will probably know more about it than me?

I'll stop now because I'm probably 'boring' you - My own phrase which I repeat  (to myself) just now (and I probably picked it up from this website is 'little by little and bit by bit') - I do occasionally use a wheelchair and I need a 'walking support'. My driving licence has been taken away because my foot was too slow when moving from accelerator to brake pedal but all is not lost because I could drive an automatic car?

'It's here and that's the bu*ger but it becomes 'finding the best way around things'. I have a slight problem with the memory but don't tell the wife because that acts an excuse when needed (but you probably know that already because my wife believes that 'females are superior' and you (being a nurse) would know if that's right or not!

Marcus. x.

Hi 'J',

I went to a fee-paying school and when you tell your 'friends' is up to you (whatever you are most comfortable with) - although I shouldn't be telling you - maybe you should be telling me. I have 'come to my wit's end trying to 'find-out' about MS. I have 'MS' and that is it. Maybe make sure that you get the 'advantages' - I let my wife drive a new 'motability' Mercedes - not long term (3 years) but I'm about to get another and it is 'minimal' cost - it will be my 4th new Mercedes but ask what you are entitled to. The MS website can be quite helpful. I'm sure that you will be able to tell me things but I don't concentrate on them 'all the time' - I find that it gets quite boring! (but maybe that is just me). I'm willing to be of any help (if you want it and if I can give it) but I 'tend' to approach it 'at a distance' - Look at the amount of people that have MS - all these 'intelligent' people and no 'blasted' cure yet. Still summer to come yet?

Have a nice day,

Marcus. x. (it's friendly, not sexual - I've got MS you know!)

I'm a staff nurse also!  Not worked since mat leave last year.  I was diagnosed in 2001, but had symptoms for a long time before, which for whatever reason they were very reluctant to investigate MS even if I knew thaats what it was.  Shift work killed me, so I started doing clinic work, not quite so exciting but not too difficult in my speciality and as I often say there is no humping and dumping involved.  Plus my patients never take their clothes off either.  I'm hoping to go back to work with support if I can (at the minute I'm subject to the disciplinary process as I've has so much time off), unfortunately even clinic work is tiring when there are great distances to cover, high turnover of patients etc, especially when some days I take the big ones to school and then come home to sleep.  I got very little support at the time of diagnosis but as the years have gone by things have got better, my work colleagues can tell how I am just by looking at me, and have in the past helped me sort out emergency appointments.  Occ health are definitely a good place to seek help from too, they can expedite appointments. 

Hi Mo Jo. You have received a lot of advice already so I will try to show that ms need not be as bad as some people think. I was diagnosed  with rrms in 1990 after a few episodes of vertigo and extreme fatigue. For the next seventeen years I had one or two relapses a year mostly fatigue that would last about three weeks. I was on no medication. I began to have stiffness in my legs and some bladder problems along with neuropathic pains.

I was diagnosed with spms in 2007. I am now on different medication for the different symptoms and I have also been lucky to only need steroids three times. I have learnt to pace myself and know when i need a rest. I am lucky to not have needed a wheelchair yet and still have a good quality of life. I always remember my neurologist telling me on diagnosis that only one in five people ever need a wheelchair.

When I asked my doctor years ago if he had anything for fatigue I was told no and just to listen to my body and rest when I needed. Now I take a drug called Amantadine and it is working really well. My brother who also has ms takes Provigil for fatigue that didn't work for me.So I think my message is that there are no two people with ms the same and to try and deal with things as they come. I hope I haven't bored you to sleep and wish you well in the future.

Mary

Hi,I am also an RGN.I work in a busy ENT ward.

My MS was diagnosed in 2006,but I first had symptoms in 1997.Being diagnosed for me wasn't really a shock,as MS had been mentioned right at the beginning.I was glad to finally know what was wrong with me.I remember when MS was first mentioned in 97,I was absolutely horrified.I couldn't believe this was happening to me,especially since I was working in a neurology ward at the time.I became extremely anxious and fearful.

I don't know if this'll help you,but try to remember that being diagnosed with MS is not the end of the world.Take a deep breath.Cry as much as you have to.Now that it's diagnosed,hopefully you'll be offered a treatment.Write down any questions you have for your doctor as it's easy to forget them in the heat of the moment.Maybe take someone with you when you go to see him.Take as much time as you need before going back to work.

I also used to do 12 shifts and nights.When I was diagnosed,I was alaready off sick for another reason.I was off in all for 10 weeks and went to work at 30%.I slowly managed to take this up to 70%.Any more would be too much.I mostly do 7am-4pm shifts.I don't work more than two days in a row and I no longer do 12 hours or nights.

Occupational health have been great and my bosses at work are very flexible and understanding.

I live in Switzerland,but I'm from Scotland and did my training in Scotland.

I hope that some of this might be of help to you.PM me if you want.Take care,Brenda x

Hi, I have just read your messages. I am 56 and married to an Optometrist from Northern Irelland with one wee girl of 9 whose name is Ciara. My wife is catholic, I'm not, and it is sometimes more difficult to deal with than MS? - Slow down, and relax and investigate if you can get a carer - I live in Scotland and they are free - yahoo! But to be realistic, it is not my decision to tell a 'Nurse' what to do. I got a job 'seated' answering the phone at Sky - I once did a shift for 12 hours but it was only my own choice - quite honestly it was a 'bit' boring and even though people phone in - you have ultimate control over the call and you can 'hang-up' any time you want to! As it happens people are people and nothing much happens and as a nurse I would imagine that you could do this 'hands down'. It's not well paid but it gives you something to do. I lasted about 8 years - I didn't actually 'like it' and I seemed to have problems with my memory - I can't remember? As for disclosing that you have MS, 6 other people who worked there but I was kept away from them for 'secrecy reasons' but I have had MS for over 13 years (my Doctor says 'maybe longer' he doesn't know! And his own brother has MS and he suspects that he might get it - he doesn't know!) As for divulging to other people that you have 'MS' - IT'S YOUR CHOICE! BUT IN THE 13 OR MORE YEARS THAT I HAVE HAD IT, PEOPLE ARE VERY UNDERSTANDING AND VERY HELPFULL. SCIENTISTS WHO STUDY MS DON'T KNOW FULLY WHAT IT IS AND ACCORDING TO THIS WEBSITE THERE ARE OVER 100K IN THE UK ALONE - THAT WOULD BE ALOT TO HAVE IN YOUR HOUSE IF YOU WERE 'HAVING A PARTY!' - OVER 2,000,000 IN THE WORLD - IT IS CLAIMED (MAYBE WE COULD 'SET-UP' OUR OWN COUNTRY?)

Now that would be something because if any one there found out that you 'didn't have MS' then you might be 'treated as an outsider?'  

Sorry 'if I am taking alot of p*ss' - BUT I HAVE MS. DON'T YOU KNOW!

Relaxation is a good hobby and 'sometimes' heat and stress are to be avoided. It's YOUR CHOICE - just think if you had to look after someone with 'M S'?

Marcus. x.

(p.s. I am going to Lanzarote for my 9th time - because the warm breeze there helps my walking and other functions but it's up to you where you go - in fact everything is up to you! It's your life! - ENJOY!)

I don’t know if you know Marcus but there is a gene theory that MS was spread by the Vikings because of all the rapeing and pillaging they did.

http://www.publichealthalert.org/Articles/MMDrymon/Multiple%20Sclerosis.htm

http://www.aspects.net/~janus/vikinghypothesis.htm

George

Hi, George,

I have blonde hair and blue eyes and MS. What about all the people who have MS and don't have blonde hair or blue eyes?

Marcus.

Getting back to Mo Jo500 I hope you are feeling better today.

You said it was a new dx ,how are you feeling about it now and how long have you had a sicknote for?

Pip

mo-jo500 im also a nurse. diagnosed in 2009 (just after qualifying.) i am currently off sick due to my hand going numb and im unable to write/hold a pen. :-( 

i work 12.5 hr shifts and it is tiring! starting Copaxzone soon and may need steroids too

Hi
I was a ward sister when diagnosed with MS last year . Had one day off after being told and not had a day sick since. I had trouble working as my hands were numb so I couldn't write properly and I couldn't do finer things such as getting pts dressed because of the buttons or opening up medicine bottles. Drug rounds were a nightmare and they put me as the discharge co ordinator on my ward to start with. I was fortunate because my job was split between ward sister and nurse specialist. I had the usual occ health assessment and it was deemed that I could not work effectively as a ward sister. My job was transferred over to full time upper GI nurse specialist. This did take nearly a yr to sort as my hospital was in the process of merging. I make the most of the people I have around me and can access neurology any time. Everyone knows I have MS. I have very few symptoms other than the permanent numbness and I usually get bone pain about 6 hrs after the avonex inj . I make sure i don't see pts around that time and stay in the office. I do have good support and my job keeps me level headed most of the time. you have to remind yourself that the odd twinges that you feel are not relapses but wear and tear through yrs of being a nurse.
Can I just ask who diagnosed the MS if your not seeing neuro till next month
Take care
Lesley