Diagnosed with MS

Everyday living
1

Good Evening all, I was diagnosed with MS today and don’t really Know how to take it, all my symptoms are is tingling itcyness I’m fit healthy any guidance and help would be much appreciated Kind regards Luke

2

Hi Luke,

Tough being diagnosed but glad you found us.

We’re a real mixed bunch with loads of experience of MS and everything it entails.

There are lots of good leaflets on this site and in this forum there is a search feature top right.

My top tip is to keep an MS diary and write everything down also a folder with all the letters you’ll get.

Useful in the long term if you want to apply for a blue badge or PIP Personal Independence Payment.

Take care

Jen

3

Hi Luke,

Being diagnosed enables you to stop wondering what is happening and to learn lots about yourself. Being fit and healthy is great. Enjoy stuff to the max and try to look after your health. I suggest that you build a network of friends, family and health professionals who can support you on whatever way things go. I was diagnosed in 1991 and like many others here have been through many highs and lows. I have learned a lot, forgotten a lot and continue to learn about listening to my body and adapting to any new “normal” . There is a vast amount of experience and empathy to be found here. No two people or conditions are the same but the majority of issues will have been experienced by someone or other here and will be happy to share their knowledge and support.

All the best

Mick

4

Hi Luke,

I was diagnosed last summer. Also have mild symptoms and like you am otherwise fit and healthy - touchwood. I have found reading about the oms programme really helpful for me. It gave me something positive to be googling at least! I have been following it and whether or not it’ll make a difference in the long run only time will tell, but for now it’s keeping me focussed on being active and healthy and that can only be a good thing. There are also some really easy steps like taking high dose vitamin d which is a quick tick of a box.

Good luck, Charlotte x

5

Hello Luke

Welcome to the forum. I know it’s probably the last place you ever envisioned or wanted to be welcomed. But you might find it useful. There are many of us here who’ve had MS for years, and while as Mick said, no two people are the same, we still have a lot of experience which we are generally happy to share.

Have you been told which variety of MS you have? The types are:

  • relapsing remitting (RR), which is characterised by relapses (aka attacks or flares) followed by remission, either completely or partially resolving back to your ‘base level’. About 85% of people are at least initially diagnosed with RR. There are lots of Disease Modifying Drugs (DMDs) which are designed to reduce the number and severity of relapses. Have a look at https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for more information.
  • RRMS can become Secondary Progressive (SP) over time - several years at least. Relapses usually stop (if they don’t it’s called Relapsing Progressive) and symptoms no longer come in waves, but just remain and (hopefully slowly) disability just gets worse.
  • Then there’s Primary Progressive (PPMS) where there is no relapsing early stage, just symptoms that (again hopefully slowly) get worse over time and do not remit.

For more information on the types of MS, see https://www.mssociety.org.uk/about-ms/types-of-ms

If you are diagnosed with RRMS, as I said, there are DMD’s, there is also one licensed for PPMS (Ocrevus).

The places it’s to look for information on MS are of course, this site (see the button marked About MS) or the MS Trust. Also, you should have an MS nurse assigned to you, a good one is an absolute mine of information. Try to avoid random googling symptoms, that’s the way to end up confused, scared and wrongly informed. Equally, we’ll do our best to give you support and information. Just keep in mind that we are amateurs too, we only know what we’ve learned by our own experience.

As Jen (Goldrat) said, writing things down is very valuable both to track your symptoms and to explain what’s happened to you to the medical professionals but also if in the future you need to claim benefits or to get a Blue disabled parking badge. There are many diary apps you can get to help with this. Mick (Mogace) and Charlotte also gave you good advice, to look after your health generally. Charlotte also said to start taking Vitamin D supplements. This is a good idea, but do get your GP to check your levels either before you start or within a couple of months from starting. Ask your MS nurse or Neurologist for their recommendations as to dosage, people take anywhere between 1000 international units (iu) to 5000 iu. Personally I think getting as fit as you can is vital. The better your general fitness level is, the better you’ll be able to cope with relapses and/or symptoms as they come along.

Best of luck.

Sue

6

For your diary, include what you were doing just prior (up to 3 days for me) to this symptom. It may help you discover ways to prevent it from happening or reduce the affect that it has on your life.

Glad you’re fit and healthy! May you stay that way for a long, long time.