Unsure of what to do next !!!

Hi, I was diagnosed with MS on monday 25th March 2013 which was a shock to the system and still is.

In December 2008 I lost my vision in my right eye which I left or a couple of weeks thinking it was nothing and would go away, but it didnt. I went to the GP as day to day life was becoming a struggle. I was sent to the eye hospital immediately and was given an appointment to see the neurologist the following morning who diagnosed optical neuritis. I was prescribed steriods by drip for three days and then high dose of streiods in tablet form. It did take time but eventually my sight fully returned but did have times when i would have a bit of blurred vision but has quick as it happened it came back. I did undertake a MRI scan which everything came back normal. I was discharged and carried on with no problems.

In October 2012 I had a funny sensation in my left arm and fingers, thinking nothing again left it alone and carried on after a couple of weeks it became unbearable and went to see my GP, who refered me to the neurologist whom carried out various balance tests etc and referred me for a MRI Scan which I had in January but I did’nt see anyone else till 25th March when i was diagnosed.

I am very confused on what to do next, I’m in process of starting up a new care business but feel that I may not get registered due to my MS. I also started a new job in February as a care assistant which I have been in the care industry for over 16 years and have never had any problems undertaking any tasks, but since taking on my new role in February I am finding my job very difficult. I feel very tired, my legs seem to cease up and find it very hard to walk, I go dizzy and find it hard to focus, this is a very demanding role and there is no time to rest when I need to. The job is 15 miles away from my home and find this is also stressful.

At present I seem to be getting other problems but don’t know if this all associated and fightened to see GP in case it’s just silly in my mind problems.

Sorry to have babbled on but just needed to blurt everything out as I feel I can’t discuss anything with anyone at the moment.

Any advise would be appreciated.

Hi Deb,

Like most people on here I fully understand your uncertainty. I was diag. June last year after experiencing numbness and tingling sensations.

My first reaction strangely was one of relief, in knowing it wasn’t all in my imagination, from then on it has been a case of trying to understand what MS is doing to me, Like you I to have a stressful and demanding job and am unsure if I can continue to do it.

From my experience you need to allow yourself time to understand where you are and how to manage your situation.

Also like you I have felt like other things have cropped up and had numerous tests, distinguishing between MS symtoms and other issues can be difficult but never be affraid to consult your doctor and ask.

The only other advice I can offer is try and be strong (I know it can be difficult) I tend to treat my sysmtoms as a pain in the A**e, try not to let it get on top you but give it some respect you have to adjust things not give up, you WILL learn to manage it, but give yourself time.

Never be affraid to ask, either on here or the MS nurse

have you been offered dmds? if not, why don’t you ask?

as for work, try access to work who will help get things in place for you.

carole x

Hi Deb, and welcome :slight_smile:

Getting your head around an MS diagnosis is hard even when it’s expected, so having it as a bolt from the blue is going to take a while longer to adjust. That process can be a bit of an emotional rollercoaster, so take it one day at a time and be kind to yourself - it will get easier.

As far as your registration goes, I cannot believe that your MS will make any difference. In fact, I would be surprised if you even have to declare it. MS is covered by The Equality Act which means that no one can discriminate against us - what they would do for someone without MS, they have to do for someone with MS. The other thing that the Equality Act states is that employers have to make “reasonable adjustments” to allow someone with MS to remain in work. That means that your employer should be open to providing you with equipment, letting you work from home more, having regular and proper breaks, changing your hours, etc, - anything that is a reasonable change that will allow you to continue in your job. This is the law and has nothing to do with how long you’ve worked somewhere - you are covered automatically. So why not have a think about what might help you in your job and talk to your manager / HR / Occupational Health people about it all? Access to Work will help you with this too. (They can also help to fund any adjustments, including, e.g., paying for taxis to and from work if you are struggling with those 15 miles.)

Some jobs are exempt from the Equality Act so I suppose what kind of care you are providing may alter this - Access to Work should be able to advise you.

As far as “silly in my mind” problems go - if something is bothering you, it’s not silly. Speak to your MS nurse, see if there is any help available for the symptoms that you are struggling with, and don’t be scared to see your GP. Most GPs don’t know anything about MS, but they will understand how difficult it is to come to terms with a new diagnosis and will hopefully be supportive. They will also be able to refer you to a counsellor if needed - it can be a wonderful help to be able to let it all out to someone who listens without judging and who you can’t hurt!

Coming to terms with MS is hard. And MS sucks; there is no doubt about it. But, what you may not know is that it is NOT the end of the world and the vast majority of people with MS go on to have long, happy and fulfilled lives. There is no reason why you won’t go on to have a very successful business. You might need to think about contingency plans for when you have relapses (hopefully few and far between) and consider taking less of a hands on role, with fewer hours if necessary, but there will be a way.

Karen x