Worried and starting to get anxious

I've been on the forum now and again with occasional questions. I've had various sensory problems over the last 20 months. I've had two abnormal MRI brain scans, both showing numerous high signal lesions and now I've had a positive lumbar puncture.  I've got a follow up appointment with the consultant on 27th April.  The consultant wrote to confirm the positive lumbar puncture last week, saying it was likely to be MS.  I'm guessing that he wouldn't want to tell me via a letter and will confirm it at my next appointment.

Last week I was just relieved to have some kind of diagnosis but now the reality is starting to sink it.  As I'm 49 and my symptoms have never really gone away, just got steadily worse I'm thinking it could be Primary Progressive MS.  I'm starting to worry about the future, health, money and lifestyle.  I work full time and hopefully will be able to for quite a long time yet.  Thankfully I work in a GP's surgery as a Deputy Practice Manager so the job is not physical but it's 15 miles from home.  I do have a NHS Pension so the nearer I can get to retirement age the better.  I'm aware that things could stay pretty much the same for some years but I can't help worrying that they won't.  Even now I have to plan days out carefully as I get tired so easily. 

I started going to the local fitness centre in January, Pilates, swimming and gym, in an effort to keep as well as possible.  I'm going to try to get Weight Watchers on prescription as well to try and lose some weight. 

Over the weekend I managed to smash two cups and an ornament because I go to pick things up and misjudge the distance.  This morning I fell out of the over the bath shower when I went to get out of it. 

I'm putting on a brave face to everyone but inside I'm panicking at the future.  The only one I really let see the true feelings is my husband who has been an absolute rock.


It does sound like an MS diagnosis is a bit of a certainty letdown


If MS is anything, it is unpredictable. However, that doesn't mean that we shouldn't do a bit of planning as well as do whatever we can to stay as healthy as possible; to fight it. Fighting it is a bit harder with PPMS because there are no DMDs at the moment (there are some trials going on though, so there may be something relatively soon), but there are still things you can do.


Something that some PPMSers swear by is LDN (google ldnresearchtrust for info). It doesn't work for everyone, but it has got to be worth a try. There are one or two people who use the EL pages who are on LDN with the blessing of their neuro, but most do not approve because LDN has not been clinically trialled. So if you mention it to your neuro, expect a scathing reply! For what it's worth, if I had PPMS, I would be on it in a shot. It might not work, but at least I'd tried.


Other things that are definitely worth doing are improving your diet (you've ticked that box already), exercising and keeping as fit as possible (tick), keeping as flexible as possible (if you aren't already, please add regular stretching to combat spasticity), taking vitamin D3 supplements (if you haven't had your levels checked, please do; in fact, get everything checked!), omega 3 is supposed to be good for MS too (get one with a decent amount of the stuff in it that's good for the nervous system, sorry, can't remember what it is, but most omega 3 brands are low in it).


Another thing you could try is HBOT (hyperbaric oxygen treatment). This is available at most MS Therapy Centres. There is no evidence that it slows progression, but at least one small trial found that it helped with spasticity. There is also some (mixed) evidence that it can help with bladder problems. Quite a lot of people report that it helps with fatigue too, although this hasn't been found in the few studies that have been done. Worth a try though! The MS Therapy Centres also offer physio, exercise classes, reflexology and things like that, so are worth checking out anyway, even if you don't fancy HBOT.


In the meantime, it is really important that you get the help and support that you need to minimise the effects of your current symptoms. The neuro will be able to recommend meds or therapy for symptoms that you aren't coping with. You also need to get an OT assessment and see a neurophysio if you haven't already. With MS, you are covered by The Equality Act, so your practice needs to make "reasonable adjustments" to allow you to stay in work. So perhaps a change in hours or different equipment or aids around the office? On a completely different front, you need to check your paperwork for any possible critical health policy you might have - it might make the world of difference to your financial planning. It would also be sensible to check out your pension - exactly what are the terms and exactly what will you get and when?


A diagnosis is scary. No question about it. However, as you learn to live with it and with your MS, you will find that, actually, you can cope. Things that you are terrified of at the beginning either don't happen or, if they do happen, they aren't as bad as you feared. Yes, sometimes MS can be quite overwhelming, but we manage and we carry on. It is only a very small percentage of MSers (including PPMSers) who aren't able to. For the rest of us, life can still be, and is, good.


Please make sure that you are prepared for your appointment - get what you need from it, e.g. recommended meds & therapy referrals. Make sure that you get your MS nurse's contact details (ideally an email address as well as a phone number). You could ask always about any drug trials for PPMSers too. And anything else you want of course!


I hope it goes well!

Karen x

Karen has given you some excellent advice.

I have only one thing to add and that is Access to Work can provide support to help you keep working. They can even provide taxis to get you to work. Access to Work can be contacted through Jobcentre Plus.

Try not to worry too much about the future (easier said than done) anything is possible. Even progressive MS can plateau, unfortunately there is no way of predicting what will happen.

Good Luck!

Thank you so much for the useful advice.  I shall certainly bear it all in mind for my appointment next month.