At my wits end

Primary progressive MS
1

Hi all

My name is Giova and am a new member. I am 56 years of age and have recently been diagnosed with MS. I am really struggling with this and not coping. Want to burst into tears and curl myself up regularly . It’s not fair on my wife and children!

Been told by consultant that I had probably been living with it undiagnosed for 17 years since I had an episode with my eyes resulting in me having to wear prescription prism lens glasses. Did not have any other symptoms until 20 months ago.

Am married with 3 teenage kids.

Work as a sales manager driving to meet clients and going by train to central London. Walking about London and using public transport is becoming increasingly difficult . Been with employers for 31 years. They started of saying “don’t worry” etc etc but detecting now some change in that. I don’t have money, am in some debt, have 2 years of mortgage left and have to get my 3 kids through uni. May as well throw in that I’m an only child with a house bound 91 year old mother with severe dementia.

Had original MRI and tests 8 months ago.

Am suffering greatly with walking (wobbling from start & worse after about 5 mins), balance, fatigue, lavatory functions, digestive system issues and all the other symptoms. Life is now just a process of existing.

Type of disease still to be confirmed but my consultant has suggested it could be ppms.

As such I have been left with many unnecessary hurdles to overcome by both the private and NHS health systems. Am now waiting for MRI scan, Lumbar Puncture and Neurofillaments test which I have no idea what it is and no one has bothered explaining it to me, what it does and its use! Does anyone know please?

Am considering paying any excess the health insurance company won’t cover for these and having them done privately rather than have to wait the scandalous 3 - 6 months with the NHS.

What is the point?? The reality is I’m worth more gone!

Every day is now one of immense worry not just for that day but for forthcoming ones. Am jealous envious of those I know who are at stage of life where they can start taking things easy, have more holidays etc…

I do not look forward to waking up and facing another day in particular when it is a work day and I have to bluff my way though it.

Thank you for reading and apologies if I’ve made anyone feel miserable.

Giova

1 Like
2

Hi Giova,

See no-one’s replied to you yet - welcome to the club no-one wants to join - especially this special section.

I’m rubbish at the emotional support, but if you want any practical help/suggestions, just post away.

Sometimes just getting stuff off your chest is what’s required, so no need to apologise.

Jo x

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Thank you Jo, much appreciated.

Reflecting back on my first post and reading it in cold light of day can see it’s too long and too detailed.

4

Giova,

I am 63 and I managed to carry on working until I was 61. For a year before I was awarded my enhanced pension early on medical grounds, I reduced my hours as I was suffering mainly with fatigue and poor concentration. It was the best decision I ever made.

I assume that you have a provisional diagnosis only, pending the results of your tests. Are these due fairly soon, as the last thing you need now is to be in diagnostic limbo. When you have a confirmed diagnosis you could think about the following.

Reducing your hours. Whatever you do, do not resign!

Your employer has to conform to employment legislation and make ‘reasonable adjustments’ to your working conditions and environment, to enable you to carry on working.

You can request a workplace assessment by an Occupation Health assessor who will report back to your employer and you can all then agree to what is required for you to continue working. I do not know whether your employer is a large or small firm, but larger organisations will have their own OH and Human Resources departments with experience in these matters.

It is essential to contact your union rep, assuming you are in one. The rep can attend all meetings with you and be instrumental in negotiating the best arrangement for you. In the initial stages, the rep can advise you with the wording.

Don’t forget that you are the important person here and you must negotiate the hours and conditions that work for you. It is easy to overestimate what you can do and then find later that you need to revisit your hours.

Consider applying for a PIP. This may supplement some of the money you would lose by reducing your hours.

I apologise if the above is a bit matter of fact but I hope it helps you in some way or other.

Best wishes

Alun

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Hi Alun

Thank you so much for your detailed and very informative reply. No apologies required for the matter of fact ness as it is with empathy and knowledge of the condition.

I had the diagnosis a few months ago. These impending tests (MRI, LP, Neurofillaments) are to determine the type and best treatment. The whole process of organising these tests is confusing & difficult. I initially saw my MS specialist neuro, Dr B Turner, privately following a recommendation from my initial neuro who gave me the diagnosis. Both via work health insurance.

Because of limitation of treatment private health can offer for ms Dr Turner agreed to see me in his NHS clinic in London, out of my home area. The current impending tests and scan were requested at this appointment on NHS. Choice was 6-8 week wait on NHS or within a week or 2 privately if I pay shortfall of what insurance company will fund. Think I will pay money I don’t really have as am struggling to cope with condition and the wait.

Have had to battle both NHS and private system and continue to do so in order to organise. Considering its MS patients they are dealing with I cannot understand the lack of understanding and unwillingness to help exhibited by those in both sectors.

With regards to work I do not go to an office, maybe once every 3 months, but instead am based from home travelling to see customers by car and train. It is a small company with no union presence and I am not in a union.

I had the other day an informal meeting with my manager and company director at his request. He said, only though when we met in london away from office, it was mainly for health and safety reasons, company is aware of my diagnosis. Also briefly touched on amendments to job.

I was never advised in advance of the intended discussion agenda for this meeting, should I have been? Neither was I told that if I wanted I could have someone with me, should I have been given this option?

Thank you also for the PIP suggestion.

Kind regards

Giova

1 Like
6

Giova,

I’m by no means an expert on employment law, but there are people who are very clued up on this site - post any employment questions on the “Everyday Living” forum, and you will have plenty of replies to any queries you have - there will almost certainly be someone who has been in a similar situation (whatever your situation), and will be able to advise, and there are other people who can point you in the right direction on anything else regarding employment, pensions, benefits etc.

MRI scan - is to find the location and state of your lesions - you may have it with contrast (gadolinium introduced via a canula) or without - it’s really noisy, painless but uncomfortable, and somewhat claustrophobic.

Lumbar puncture - taking a sample of your spinal cord fluid. Not pleasant, you may need time off afterwards if you get “THE HEADACHE” - not everyone does. Helps with diagnosis, as there is an MS marker (OCBs) which supports diagnosis. As you may know, there is no specific test for MS, so it all helps to eliminate MS mimics.

Neurofilaments test - I don’t know, I haven’t had one.

I wouldn’t pay excess just to get the results of these a few weeks earlier, but it’s your choice.

We all have these days, MS is not an easy thing to live with, as the future with it is uncertain, but then, the future for everyone is uncertain, it’s just that most people haven’t realised it yet.

Don’t worry about upsetting people on this forum, we all have up days and down days, and we do understand.

Hope that helps in some way,

Jo x

1 Like
7

Giova,

If you are going to explore the possibility of a PIP application, I would recommend that you look at the following website which provides very practical help and a self-assessment tool.

You have done the right thing by speaking to your employer to make them aware of your condition. As for taking someone with you to meetings, a lot will depend on how much you trust your employer. You can always make an appointment with CAB for advice over employment law.

However, you are entitled to a meeting with the company Occupational Health unit to discuss how MS affects your work and what may be offered to help you. As your company is small it probably has contacts with an outsourced OH firm.

In my case I tried working at reduced hours as part of my ‘reasonable adjustments’ for about a year before applying for early medical retirement on health grounds. My claim was assessed by an independent doctor, and I found that it did help that I had been seen by an OH assessor and that I had tried working under the terms of my ‘reasonable adjustments’.

The process is not quick and it has to follow prescribed steps. You may find that agreeing to ‘reasonable adjustments’ with your employer may be enough to improve your situation. If that does not work after you have tried these new arrangements, you could consider taking early medical retirement. Only you know what the financial implications will be for you and your family. A spreadsheet is essential for these sorts of calculations as you can imagine.

I hope other people come forward with advice. My experience of working in a large organisation with its own HR department is not immediately comparable with yours. I assume that some who use the forums will have gone through these processes with a small firm and can offer better advice.

Best wishes

Alun

8

Hi Giova

Firstly welcome to the forum (the club nobody would choose to join) but it is what it is, and there are lovely friendly people here with a wealth of knowledge, and always willing to offer advice when they can.

A diagnosis of ms takes time to get your head round, it’s a bit like a bereavement whereby you go through all different emotions, but acceptance does eventually come, you need to give yourself time, don’t beat yourself up, take one day at a time, and be kind to yourself.

Hope your tests make up the puzzle for your neuro to act on, take care.

Pam x

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You all restore my faith in humanity!

thank you

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Hi Pam

thank you for your kind words.

kind regards

giova

11

Alun you are so helpful!

cant thank you enough

12

Another Pam here! I have found, for me so it is all individual, that for me being patient has been a big learning curve. I have found that with M.S. most things go slowly so there are few rushed appointments, times in-between consultations can take time and this time often gives them opportunity to share what they know about you so far and your tests with other specialists that are not particularly linked to you. They may consult with specialists from other departments, it is their support network to ensure that they are giving you the right information depending on what they know and joint knowledge. Sometimes, I think that jumping quickly to an appointment out of the usual time frame misses this opportunity. It pushes the professional to say something before they may have gathered all of their knowledge and evidence.

For me, again, symptoms. appointments, consultations, discussions about treatment, nurse assessments all come slowly but it also gives me time to assess myself before I go in with my questions and my evidence. My M.S. doesn’t shift that quick from one stage to another unless I am having a relapse. I have slow changes, or new symptoms develop just in a day but their progression or affect may change from month to month. In my area, if you pay private, you still see the same people that are with the N.H.S.it is just the time frame you are paying for.

You wouldn’t think so, but my house has loads of small gadgets that make my day much easier. I have walking sticks which help me go anywhere (even swimming), I have a back support bandage thing to help me if I am in the car or on a train for a long journey. I have pain killers (joy to the world) and my stick enables me to plonk myself down on disability seats. I have adopted loads of things that are not obvious that help me. It took ages, lots of research, reading, phoning, social services assessment, physio blah blah but that awful pain of going somewhere and dreading it daily is not so vivid, as I have made adjustments and they free me up to do things.

It sounds like you have hit the wall. We all get there, it isn’t very nice. Many more good things to come. Be kind to yourself and look at things that can help you.

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Hi Giova, welcome to our helpful forum. We all understand the frustrations and delays in getting a specific diagnosis, going through those mentally torturing “what ifs”, "what about and the waiting. It’s like living in Limboland, full of worry of the unknown.

I agree with the previous posts, and the fab employer advice, I can only add that paying privately (beyond your health insurance limits), won’t actually be beneficial. Yes, it will cut waiting time down, but then there’ll be further tests before a definitive diagnosis, which takes quite a long time.

Unfortunately, due to the nature of any type of MS, the Specialists need to eliminate other conditions, it is a very long, drawn out process. We all know the impatience and real worry of ‘waiting’ and what our future holds etc.

After a definitive diagnosis, there’s different stages most of us have, ie Anger, snapping at everyone, feeling left alone to cope, grieving for our pre MS life, fed up of being tired, forgetful, in pain. Eventually we obtain all the right info to learn, and then accept our lot.

It’s not easy but with the right support of a Neurologist, MS Nurse, GP, Urologist all working for you to have a better quality of life, it will all fall into place, for you and your family.

I wish you well Giova,

Chrissie x

14

Hello Giova.

You’ve really been dealt a cruel blow but that’s what MS does.

It’s a blunt, stupid and sometimes relentless condition which may seem insurmountable.

But as I say often we are the clever ones. You can tell by the good advice you’ve had already.

I think I had the neurofillaments test done before initial diagnosis. You get electrodes on your head and look at a screen.

All I can add is that I had an assessment by access to work and they offered a whole raft of things to help. In the end I retired through ill health after battling the condition for 22 years after official diagnosis. I’d had some systems ten years previous though.

Best wishes, Steve

15

An MRI and a lumber puncture ( a syringe extract fluid from the bottom of your spine doesn’t hurt) will definitely confirm your condition we’ll that did it for me so it is a long wait but hang in there. You can’t be responsible to put your kids through Uni when you could have this condition and they must understand that surely. Once you have a confirmed diagnosis there are channels to get funding for example getting to work. The government paid my employer to pay for taxis for me to get to and from work as an example. I have a carer writing this for me so I have to be brief as it is not fair on her. This is my first time on the forum so I just wanted to give it a go. Take care.

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Hi Novie

Just want to say welcome to the forum and hope to see you here in the future.

Pam x

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Hi Giova

I was 56 when I was diagnosed (i’m 57 now) and I had more than likely been living with MS for over 30 years and didn’t know it.

Like everyone diagnosed with this shitty disease it has taken (is taking) a very long time to come to terms with it and i’ve done the crying, the locking myself away, the ‘why me’ stuff. Still do sometimes and probably always will.

I informed my employers before I got the diagnosis and they referred me to occupational health etc etc. I have cut down work from 5 to 4 days a week. It is still a struggle but for now it’s one i’m prepared to carry on with. You must get all the help you can from anywhere you can.

One thing that hasn’t been mentioned so far is Critical Illness cover - if you have that then I believe you could claim now as MS is considered as a critical illness.

Apart from that all I can advise is to take one day at a time. The physical symptoms you are suffering at the moment may or may not continue - wait for the firm diagnosis. (Having said that as Poll will confirm - firm diagnosis doesn’t always mean firm diagnosis!)

I don’t feel like I can be of much use, but if I can offer any help at all - like everyone else on this lovely forum - I will.

All the best

Juls

18

Hi Giova

I cannot add much to the rest of the guys but to offer my support. Your story could be mine but if it helps I had two girls to put through university, it was a struggle but somehow you find ways to get there.

I am now 68 years old and have been stuck with ppms for 40 years but kept working till I was 58. I would also back up Alan’s advice and do not give up your job and see your union rep, it’s amazing how cooperative bosses can be when the union is involved, I know from experience, I was a unison steward for 20 years and helped many members before I needed my own help so hang on in there, it aint easy, but remember you are not alone and using this forum you will get terrific advice.

Hope this helps.

Tony

19

Hi There,

When I was first diagnosed I also felt I was more dead than alive. I had an extremely kind and helpful doctor. In that I was lucky.She told me that instead of the “why me?” that I was feeling try Why not me! I have 4 children all under 11 years old and a no good husband so I knew they depended on me ( the children not the husband.) There was no one else. I was paralysed from the waist down so I had to do it all from the wheelchair. No easy task.

I did not have the complications or worries you have about money etc.They must get on top of you so much. There must be wiser people than me on this site who can offer help or advice about those things.

My advice have a highly developed sense of humour. See what you do have., A wife and children who you love and who love you. Do they know how you are feeling? I am sure they would want to know how you feel. I remember feeling so ashamed that I had MS I did not tell anyone at first. Once I could no longer disguise the shakes I had to tell people. It was amazing that small thing changed how I was helped merely by say I have MS. Friends started to help me when I needed it. I admit I did sometimes have to say “I can do that”.

Have you thought about counselling? That could help maybe for you and your family. Remember it is your body and you are entitled to know what is happening to it with regards to tests etc. Ask the doctors to explain it. Over and over again if it is needed. You know like a dog with a bone. Phone up the hospital where you are due to have the tests and pester them to see if you can have the tests sooner. Speak to your own doctor he could help with that.

wishing you all the best.

Cat

20

Thank you Pam, you are marvellous.