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New, Lost & Confused

I don’t really know why I am here; I guess it is because I don’t really know where else to go right now.

I’ll start with my story… I am going to bullet point so that I can be clear.

  • 4 years ago I started to suffer with a tremor & headaches.
  • Referred for MRI & Lumbar Puncture - results showed MS but as no other physical symptoms, follow up appointments were kept yearly – No other symptoms occurred in this time.
  • July 2014 – Dizziness, Nausea, Headaches, Tingling symptoms appeared quite vigorously.
  • Sent for MRI & results show an increased number of recent legions.
  • Official diagnosis of MS made on 23rd December 2014 as this was to be my first official ‘relapse’.
  • 1 hour meeting with MS nurse discussing treatment options / support etc.
  • Sent home with a pack to read up & get my head round it all.
  • Given a 500mg per day course of steroids for 5 days in which I have every side effect going & don’t feel any better from them.

I gave up smoking the day I got my results & now see a nutritionist to help me with my life style change.

I have a very supportive partner & mother who were with me at my results appointment.

The truth is I have pushed this from my mind over xmas & haven’t spoken a word about it & now it has hit me like a ton of bricks & I don’t know what to do next?!

I just feel the need to hide myself away & cry….

I have so many questions going on in my head…

  • Am I still in my relapse as I don’t feel any better?
  • Do I sit & worry that my next relapse is just round the corner?
  • What if the next one is worse?
  • What if I don’t get one for years?
  • What if I always feel ill like I have done for the last 6 months?
  • What if people don’t understand?
  • What if this pushes my partner away?
  • What if this affects my ability to do my job properly?
  • Will I ever feel ‘normal’?
  • Do I need to see a counsellor to help me accept this?

A big question in my head right now is the treatment….

I am reluctant to start a lifelong treatment of injections with only a 30% success rate.I know 30% is better than nothing, but what long term damage is this doing to your body?When you become immune to this treatment, do you try something stronger…weakening your immune system even more?

I am not against this treatment by any means, but I do believe there must be other ‘healthier’ ways to curb the progression?

I am so sorry or this one big ramble, but I just wanted to get this off my chest… What do I do next & how do I deal with this?

hi sway

your relapse hit you out of the blue and will go away when, and not before, it decides to.

it is entirely up to you - depends wether you like the idea of having fewer relapses or prefer not to try the dmds.

have you only been offered injectables?

there are a couple of tablet form dmds now - gilenya, aubaggio and tecfidera. these offer 50% reduction in relapses.

​phone your ms nurse and ask for some more support regarding dmd’s.

​meanwhile find your nearest ms therapy centre where you can try HBOT (hyper barric oxygen therapy) which has made a huge difference to many people with ms.

it could very well be helpful to see a counsellor. these are available at the ms therapy centres.

you have just gone through a bereavement - you are grieving for your old life.

it won’t always be like this.

carole x

Thank you for your response.

I am going to give my MS nurse a call today & talk things through with her & ask to see a counsellor.

Sway. x

Hi,

A lot of the questions that are going around in your head don’t have answers unfortunately, some will answer themselves at some point though.

As Carole asked which drugs were you offered? I’m on tysabri as I have active RRMS, given by infusion, Ask about the tablet form, I have to admit, I don’t think I could inject myself.

As for the steriods, I found when I took them it was about 3/4 weeks after that I saw an improvement, so theres time yet, I asked my MS nurse if this could happen and she said it could in some cases, hopefully this is the case for you too, I actually felt worse for the first couple of weeks.

Hope this makes some sort of sense, only dx in Oct, so I’m still learning. Good luck sorting things out, I am sure you will one step at a time, this MS thing is a lot to take in.

Take care x

Hello, Sway.
You have asked a lot of questions, but I guess that they all come down to:

  • What is happening to me?
  • What will happen to me?
  • What can I do about it?

First off you have to accept that in MS, there are no good answers. Everybody’s MS is different, and you may just be lucky and find someone who is very similar to yourself what will give you some idea. In MS, there is no normal.

OK, so you have got your first official relapse. It will last as long as it lasts - and that could be days or weeks. The next one will come whenever it comes, and there is not a lot you can do about it. But, if you are lucky enough to be offered a DMD, then there are several reasons to say yes.

Forget the 30% stuff. That only applies to the early injectables - most of the later oral ones are much better. It may be worth having an injectable now, having a side effect, and then being able to switch to a tablet later. You may be lucky and be offered a tablet straight away. What you will soon learn from this forum is that there is no consistency in treatment - you will see the phrase “Post Code Lottery” quite a lot.

Steroids take down inflammation (and nothing else) and yes, they do take a while to work. If you can work now, you will be able to work until the next relapse - and a DMD will help to put that off for as long as possible. You have given up smoking (a very good idea), and this is more likely to cause problems with your partner than MS. If they still smoke, then as your sense of taste improves, the two of you may be eating the same meal, but it will not taste the same to both of you. What you want is a good diet - but do not be tempted to try any of the extreme ones - this is one way you can show that you are “still normal” despite the MS.

Now what you can do is to take your list of “what ifs”, add to the list if you think of anything - and put the list away for a month. Then take it out and start crossing things off.
Cross off everything that has solved itself.
Cross off all the things that you have researched (here or elsewhere) and now have answers for.
Then put it away for another month.

But, the one thing that is an absolute …
If you drive, you must inform the DVLA (and your Insurance Company - who will do nothing).
All that will happen is that you will have a few forms to fill in and you get a three-year licence.
But if you do not do it, you will be breaking the law.

And remember, you can always come back here for help. Someone will always know the answer.

Geoff

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It sounds as though you are already doing a good job of helping yourself by making healthful changes to your life - stopping smoking and making sure that you are eating well are really good things to do.

For sure, it can be hard to get one’s head around the benefits of the Disease Modifying Drugs; it can be hard to see the point of something that probably isn’t going to make you feel better now, but should help to head off future damage. One way of looking at it is in terms of paying an insurance premium to protect you against hard-to-quantify but serious future risk. Even if you are one of the (many) lucky ones whose response to the drugs is really good (far better than the 30% average) then you will never know for sure what bullets you have dodged. But the more we get to know about MS, the more most of us see the value of keeping it at bay if we can.

It is all such a shock to the system, this, and there are so many unanswerable questions. Just take it one step at a time - you will find your way through.

Good luck with it all.

Alison

Hello all,

Sorry for the late response - I haven’t been on here for a while.

I wanted to say thank you all for your responses.

I am feeling alot better about things now & have accepted the diagnosis. I am still thinking / looking into the treatment options but am taking my time & looking into it when I feel my head & feelings can take it all in.

Thank you all for your advise & support.

Xx

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