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Diagnoses

Went to my appointment today and I’ve been diagnosed with RRMS relapsing remitting ms, she told me it’s not going to be anything like my sister has got and there’s a lot more treatment out now compared to when she was diagnosed 21years ago

it’s scary but I’m glad I’ve now got a diagnosis

Hello Jo

I’m so glad your diagnosis was relapsing remitting (assuming you have to have MS, it’s seen by most people as the ‘best’ of a bad bunch). At least now you have access to disease modifying drugs (DMDs).

I expect that soon you’ll be discussing DMDs, in preparation, have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid You won’t get a completely free choice of them all, but you can at least be familiar with the various drugs.

Best of luck.

Sue

Thank you I’m just waiting for the ms nurse to get intouch with me and they are sorting out a treatment plan for me :slight_smile:

Hi, I went to my specialist appointment about my walking issues and she took wind out of my sails saying i have MS, i have never been so emotional in my life i can’t even remember the conversation really as it hit me like a wall Im unsure what happens next and writing this paragraph is very hard. i remember i am being sent to st Georges for more tests but I’m waiting for appointments. What do i need to do now, any advice would be welcome

Hello

Has your doctor diagnosed you before you’ve had any tests? Not even an MRI? But you may be saying that you’ve had an MRI and are now having ‘more’ tests. Thinking about it, you must be saying that!

It really must have hit you like a sledgehammer, coming right out of the blue like that. I’m not at all surprised you’re very emotional. Don’t expect to get MS hit you like a bomb and be able to just pick yourself up and get on with your life like normal. People typically go through all sorts of stages following diagnosis, from disbelief, to terrible sadness, through utter rage and fury that this uninvited beast has invaded your life.

Don’t worry about ‘accepting’ it, or ‘seeing the positives’. Eventually you may reach a point where you and MS can coexist in some kind of truce.

You might find it actually makes little impact on your life. It depends on which variety of MS you have, how ‘active’ the disease is and a whole load of factors that will probably be hard to take in at present. Personally, for the first 10 years or so after diagnosis, I was OK, I had MS relapses, but I carried on working through them. Life is a bit different now that I’m 22 years in, but I deal with it

If you want to get information that’s reliable and accurate, look at the About MS tab on this page. Alternatively have a look at https://www.mstrust.org.uk/ There is a wealth of information on there.

And you can always come back to us. This is a very friendly, inclusive forum. If you have questions, worries, want personal experience, just want to wail and bemoan your fate, we will do our best to help and support you.

Sue

Hi my son who is 27 has just been diagnosed this week with MS he’s been ill off and on for the last 6 months and had an mri which his consultant has verified is MS he’s very sick at the moment with dizziness etc and it is seriously getting him down, he has also 6 weeks left to finish his university degree after spending 4 years at it so this situation couldn’t have come at a worse time for him, is there anything he can take to relieve the dizziness in the interim before they put a medication package in place which will take 10days or so, thank you any information will be greatful, as a family we are just trying to get our heads around it all at present.

Hello Aly

I am sorry for your son and you as a family. MS suddenly appearing in your life is a bit of a life altering thing. But in many cases it can actually turn out not to be.

Once your son starts on a good disease modifying drug (DMD), relapses, the symptoms and subsequent disability will hopefully be less likely. But the DMDs job is to reduce the number and severity of relapses. They don’t help with symptom management.

Vertigo (which is I assume what’s causing his dizziness) is something that most drugs don’t help with. It’s more a case of rectifying it manually. In the form of exercises. Have a look at https://www.mstrust.org.uk/a-z/dizziness-vertigo

If your son can get a referral to a physiotherapist, they should be able to help with exercises, but that’s not going to be a very quick process. They often have long waiting lists.

Meanwhile he could try some simple exercises. Be warned though that these can temporarily make dizziness worse in the short term, before improving things. (It won’t hurt to try anyway!)

  • Sit down somewhere stable - edge of the bed? Preferably holding on to something for stability. Hold a pen or similar up at arms length in front of your face.
  • Slowly turn your head from side to side, keeping your eyes focused on the pen, for as long as possible (before feeling you can’t do any more). Count the number or times, or preferably time it - I use my mobile phone.
  • Wait until your equilibrium returns, then do it again, trying to increase the time slightly.
  • Repeat this several times a day. The aim is to get to at least 2 minutes before having to stop.

You can replace the head movements with keeping your head still and moving the pen, but that’s tiring.

Other exercises are tipping your head backwards and forth, shrugging your shoulders, just generally moving your head around.

In terms of his last few weeks at university, he could ask his neurologist (probably not a GP) if he could get a prescription for a drug to help with fatigue and concentration. There are two main drugs, the best one is Modafinil, but this isn’t easy to get prescribed, plus it can give a person nausea for the first few weeks (which he could live without more of!) The other is Amantadine, it’s actually an anti-viral drug that’s been found to help with fatigue in MS.

When you start looking at the internet to help you understand the disease, try to avoid random googling, the best places to look are this site (the About MS tab at the top), and the MS Trust, which has excellent resources on nearly every subject, symptom and drug therapy available.

And of course, we will help with worries and questions. Just be aware that we’re not experts, except of our own disease, and as MS is different for everyone, we can only tell you about our own experience.

Best of luck to your son and your family. I do hope he manages to get through his last weeks OK and get the degree he’s worked hard for.

Sue

Thank you Sue that’s very helpful, I will pass on the information to him, hopefully he will register on here himself too so he can access so information and no hes not alone thank you again Aly

Am a normally a healthy 28yr old female. I have just received my diagnosis that I have MS. I have had what my neurologist described as one a severe relapse before I was diagnosed. I have no clue how to feel about it I have basically switched off from it but have questions. Have no clue how long it takes to put a treatment plan in place I know the name of the DMT I will go on but have no clue how long this process takes. I have no idea how I’ll cope going back to work with the job I do. Any help/advice would be great.