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Worried about the future

I am a 36 year old male with relapse remitting MS diagnosed 4 years ago. I recently started a new job as a director of a company which is much harder than my previous role and really takes it out of me, I’m tired all the time. I have always just got on with things but recently I am worried about how long I can perform at the level I want and not sure how to support the life I have. I’m not sure what to do or how to plan. Anyone out there have any advice for me please? Chris

hi chris

the tiredness is a very common symptom of ms - fatigue is the recognised word.

there are certain meds that can help.

i was given one of them but can’t remember what it was called. it did nothing at all anyway.

modafinil which sounds good but i couldn’t get it from my gp because it is for narcolepsy and i had requested sleeping pills because i don’t sleep well. therefore if i need sleeping pills i can’t have narcolepsy and ended up with neither the sleeping pills or the modafinil. such is lfe eh?

you might have better luck or a more co-operative gp.

other than that maybe a private gp?

some people swear by HBOT Hyper Barric Oxygen Therapy and say they are less tired. i personally don’t find it helps the fatigue.

have a think about it and do a bit of research.

good luck

carole x

Planning for the future is so hard with MS, and I really feel for you. So many of the things that a person can sensibly do to insure against the future (critical illness cover, mortgage insurance etc) are no longer options if one did not have the foresight to put them in place before illness struck. But who thinks of these things when young and fit and without a care in the world?

For many people, the best way of securing some sort of income protection for the future is through an occupational pension scheme - they often provide group- rather than individual cover, so a pre-existing condition is not an automatic bar in the way it would be with an individual policy. That’s the only realistic thing I can think of. Unless you marry money, of course…

I don’t know, Chris. It is so difficult. MS has a nasty habit of doing this to a young adult in the prime of life, and it makes life-planning very difficult, I know. Good luck with it all.

Alison

For me, modafinil makes a real difference (confirmed by how things are if I forget to take it in the morning).

I have been on it for years and years, though, and it seems to be easier to get when you’re on it already. When I started it, it was hard to get from the NHS on account of cost. Back then, the branded version, ‘Provigil’, seemed to be the only one available and it was expensive. Things have moved on since then and the cost has come down, but it does seem to have got even harder to obtain for other reasons. There are some health concerns, I think, and another big factor is the fact that has become very popular among students have nothing the matter with them except an urgent need to pull an all-nighter to finish an essay on time, for instance. When a drug is doing brisk business on the black market, availability for legitimate reasons tends to get a whole lot trickier. If the students of today were happy to put up with Pro-plus tablets washed down with black coffee the way the rest of us did back in the day, getting a modafinil prescription as a person with MS might be easier!

Alison

Hi Congratulations on the new job! Remember - any new job for anybody will be stressful and being a director of a company is a responsible position so will be additionally stressful. You have to give yourself time to get used to the new role. I think it’s sensible as well to think about what us MS sufferers can achieve in the future if or when the condition deteriorates. Maybe set yourself a target date say in 3-6 months time and assess your feelings then. Is it a new place of work? Does anyone there know about your MS? Phaed

I asked my neuro about Modafinal, as he’d handed out Fampyra without me having to pay for it. I have malignant hypertension and Modafinal acts like amphetamine (according to him) and whilst my heart is normal, he just suggested brain training. How is that going to raise my concentration? I’m good at that. Dr kawashima and I are good buddies.

I belong to a semi-professional elite choir. We have rehearsals every other weekend. 4 hours on Saturday and 3 on The Sunday. I love every second. Music is my life. I teach people how to sing. The teaching wipes me out.

We are preparing The Messiah, a piece that’s been in my life for over 40 years, soprano, alto, soloist, conductor, but I do have odd concentration losses. I had a page turn after a lot of very fast semi quavers, which moved into an off beat harmony bar. I have no idea what I sang, but it was wrong. Ouch.

I tune out in conversations, but then everyone is talking Galego or Castellano. Apparently, I do it in English conversations too.

I blame a long relapse. I have one every 4 years now. This was overdue. It took months and months to go. I’m lucky I know. Thanks to this board, I found friends, how to take LDN and support from other ‘diet can help’ folks and the Biotin group.

I’m getting a new knee in January. I’d be interested to hear from other joint- replacement veterans. Knees are tricky.

Hi thanks very much. I have told the owner but nobody else. JUst concerned about how long I can work as it’s pretty difficult at present but I take your point abouit giving it a few months and I will do that.

dear bigcrules…

the most concise and sincere advice regarding fears for the future: don’t worry about it.

to expand:

  • no one’s future is set in stone and so this concern is not exclusive;
  • you have to make hay whilst the sun shines;
  • worry about the things you can exercise some control over;
  • do not dwell upon worst case scenarios ESPECIALLY if relapses can be provoked by stress;
  • fatigue when starting a new job is expected and is normal;
  • fatigue when fulfilling a demanding role is expected and is normal;
  • MS is a good barometer for you to gauge how you are feeling. so listen.
  • don’t invest time trying to second guess what MIGHT happen; it’s a wasted labour when it DOESN’T.

The very best of luck to you.

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Thanks so much Paolo

Since you are director of the company you could take advantage of this position to insure yourself and offer employees a new core company benefit that wasn’t there before. If you take out a group income protect policy to cover everyone in the company then you will be covered for you MS which wouldn’t be possible for a personal policy as it’s an existing condition. Since the policy will cover all employees the insurer isn’t legally allow to pick you out of the group and say we won’t cover him because of his previous MS Diagnosis since it will be classed as disability discrimination. The diagnosis may affect the cost of the insurance, it depends on how many employees there are. If you could swing the owner to allow this it will give you a safety net if you become unable to work.

Just reading the above post’s I was diagnosed with rr 5 year’s ago and only told the people at work who needed to know. Then in may this year I had to take some time off sick due to fatigue. I’ve come back to work on day’s instead of shifts and all my colleagues know about my ms. Work is now a lot better but don’t get me wrong I still have good and bad day’s but over all a lot better. Neil

Lots of good advice above, especially Paolo, although it is much easier to say “don’t worry” than to do it.

I would phrase it this way, concentrate on what you know for certain. You are good enough to land the job, so now you need to think about the best way you can deliver. If that means a slow selective and phased release of info to colleagues and or HR, you will know the right way to do it. It can help to think how you would handle it if one of your colleagues had similar issues. I was always pleasantly surprised by how supportive my colleagues were when my circumstances changed, I might just be lucky but I think it helped that I had prepared the ground.

As for managing tiredness / energy levels or “proper” fatigue, I seem inert to any drugs so my advice is keep a conscious eye on your energy levels, learn what your personal thresholds are and be able to communicate them clearly (E.G my team learned the difference between “shattered” and “banjaxed”) Try not to waste valuable resources being stressed , worried or angry, you will need all of your available energy for the important stuff.

Try to learn techniques to expand your thresholds, maybe relaxation or breathing exercises.

Good luck & have fun.

Mick

I have just jumped through many hoops (not literally) to get Modafinil. I started by asking my GP for a prescription but after looking through the medicines bible (MIMS) she said she didn’t think she could as it is only licensed for catalepsy now. She asked if I could talk to my MS nurse to see if she had any input. MS nurse said yes - wrote to GP. On my next appointment the GP tried to order Modafinil on the prescription system but the computer said no! Next step was to contact a neurologist at Salford Royal who DOES on occasion prescribe Modafinil for MS patients. Couple of weeks later I went back to my GP and she hadn’t heard anything from anyone. At this point I asked her to write a referral letter to a private neurologist. Forward a couple of weeks to the first appointment with the private neuro - He asked for my history. Examined me and said he would consult with his colleagues who are also at Salford Royal. Another couple of weeks later I had a follow up appointment with the private guy - I had to have an ECG before that appointment - he gave me a private prescription for Modafinil. I now have an appointment with someone else at Salford Royal and I believe that if he gives the go-ahead then my GP will be able to carry on prescribing it. I’ve been taking it for about 3 weeks now and I love it. I still get tired after a busy day - but that’s the kind of tired that anyone would feel. My brain however is now firing on all cylinders and I can happily go to work and be ‘normal’.

This advice is spot on! I shall frame it