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Coping with Diagnosis at 25

Hi,

Just over 7 weeks ago I was diagnosed with MS. This was a bit of a shock because at the time I did not know what MS was let alone how it could potentially affect me throughout my life. As the weeks go by I have found it harder and harder to come to terms with my diagnosis. I'm currently 25 and was told that I am quite young to be diagnosed, which could mean things affect me earlier in the future. 

I understand that MS affects everyone differently but due to my nature I always seem to focus on the negatives. I can't comprehend the thought that this is something I cannot control, that relapses will potentially come at any given moment, and that also no one knows how long a relapse can last. Currently I have experienced my first relapse for just under 3 months and it is getting to me that it hasn't gone yet. All my symptoms are head and balance based. When I think they're getting better, my head begins to get worse again and within a space of a few days it will be back to the worst case all over again.

Because of the above and coming to turns with my MS I am quite emotional. I have tried to read some of the MS Society booklets to help to expand my knowledge but parts will make me upset or feel down which makes reading more hard to do.

I'm currently awaiting my first NHS appointment as I was diagnosed through my works private healthcare, so I am yet to be assigned an MS Nurse. I am finding it hard as I feel like I need to speak to someone about MS and my symptoms and just everything MS! I have been to my local MS Society Branch drop-in session but found that this wasn't what I was seeking. I am able to speak to my girlfriend about it all and sometimes my parents/friends, but they all however much they try don't always quite understand how I am feeling.

I have also been informed that there are lots of what are labelled as 'Young MS' groups for individuals around my age but I am currently struggling to locate any of these online and in my area (North East Essex).

If anyone has any advice or tips which they believe will help me with anything I've mentioned above then I will more than appreciate it.

Thanks :)

I have MS

Hi Cuttsy

​Believe me, 7 weeks is no time at all to ‘come to terms’ with the cr@ppy disease that is MS. 7 years isn’t long enough. (And I’m coming up to 21 years). The fact is that it is bloody hard to understand the disease. The pattern / non-pattern that typifies it. The utterly random nature of the thing. The fact that your MS and my MS are completely different and essentially no two people have exactly the same disease. 

Being diagnosed at 25 seems especially cruel. Mind you, there are people diagnosed in their teens. So while you’re young for diagnosis, you’re not the youngest. You’ve said that being young means that things will always affect you from a younger age. That isn’t true. MS will do what it likes when it likes. Unless you take action to stop it. And even then, you can’t prevent it behaving badly. 

Firstly, once you have an MS nurse sorted, start talking disease modifying drugs (aka DMDs). These will reduce relapses and severity of relapses. If I were you, I’d go for whichever drug offers the best relapse reduction average that you are eligible for. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/m... You won’t have completely free choice of all available DMDs, but if you familiarise yourself with them, you’ll know what the MS nurse is talking about. 

Secondly, exercise. It will pay dividends for the rest of your life. If you are already fit, then take action to stay that way. If you aren’t, then start exercising. If you can, get some physiotherapy to start you off. The aim is to particularly strengthen your core. This way you’ll have a better basis later on. 

Lastly, as you’ve already been looking, start talking and getting familiar with MS and how other people manage their lives. Have a look at https://shift.ms/ There are a lot of young people on the forum there. And as you are already doing, talking to family and friends is great too. 

You have at the very least been diagnosed in a time when there are more and more disease modifying drugs being added to the arsenal all the time. You will probably be able to live your life well and healthily without MS coming to rule it. 

Sue

Hiya mate,

 

It’s a bummer I know; I was diagnosed when I was 23; I’m 67 now.  I got friendly (not in the gay sense) with Ronnie Lane from the Faces.  Now there’s a sad story; he even made over 1M; gave it to ARMS (a charity for MS) who gave it to a woman in America to set up ARMS of America.  Anyway to cut a long story short the last seen of her was in a villa in Argentina supping Moet and Chandon.

 

Don’t think MS is a stop sign; its traffic humps.  Listen to the good advice given by Sue.  You have a good life to lead; sure MS may throw a lot of punches, but roll with them and you will come back fighting.

 

Good luck mate; you WILL win.

 

George

When my missus had sudden and severe symptoms and Ms was mentioned by gp the one of the first things i found when i googled was this http://youdontknowjackaboutms.com/  I didn't know that Jack Osbourne had ms til then! He is a fairly young fella and he seems to look at and present a positive slant,it might be of interest to you? i think he is Us based so some info may be more relevant to them.

For me what i read didn't really relate to how severe my wifes condition seemed to be and couldn't deal with the positivety at that point,but might be worth a look

Hi All,

 

Thank you for all your replies, they mean a lot to me. In a strange way it is nice to hear that not quite coming to terms with everything so early on is quite the norm, and that over time this will get better. I believe that I and everyone else including some of you above will all come to terms with it eventually but like the nature of MS, this is uncertain when this will be.

 

I have been looking at the different DMDs available and have had discussions with several neurologists in regards to what my options will be, but like everything MS at the moment I'm putting it to the back of my mind, I know I must tackle this all at some point but I do not quite feel up to it at the moment. 

 

Sue you mentioned exercise and diet as two good things to help with my MS and I am very lucky that both of these have been a massive part of my life for as long as I can remember! At first exercise was an escape for me but now I'm losing the escape essence of it and still think about my MS. But I'm still going as I won't let my MS affect my life by taking this away from me. 

 

Once again thank you for all your kind words and giving your time to my thread :) as before, any tips or advice I would love to hear more about them.

 

Thanks

 

Tom

Hello I was just diagnoses with MS this past November 2017 I am just now not crying everyday! I have two little kids and have to be strong. I have started exercise and made some changes to my diet and started taking vitamins. I am also a control freak so this disease is taking me for a loop.I have been nn stop googling since November and what i have learned is you have to take everything with a grain of salt because everyone is different and you do not know if those people are doing things that can help them example exercise and diet. I have decided to see a therapist i think they can really me. maybe give me some coping strategies. 

I was diagnosed end of September after about year and half of tests, so by which time it felt like the writing was on the wall. You don’t say how long the diagnosis process was for you, and I know of someone who literally found out in a very short space of time. It’s a shock regardless, but I suppose if you find out suddenly you’ve had less thinking time. I’ve been really up and down. People say they experience an emotional roller coaster and I think that is very apt.  On good positive days, I think, well no one knows what’s round the corner and you have to live the card you’re dealt, kind of the traffic calming mentioned above ( I like that anolgy). On bad days I think how long will I be able to work for etc. You get the drift. Again, it depends how severe your symptoms are. The only think my Neuro did say to me while I was in limbo and when I asked if there was anything I could do I.e diet etc. to help myself was to take vit D supplements. He said that it’s not proven but thee might be a link. Apparently in the U.K. it’s recommended to take vit D in winter any way. So I do, not excess amounts just the rda. The other thing he said was a good ms diet was a well balanced diet. I’ve continued to do my horse riding even when I had the optic neuritis, as after the first week I figured she (the horse) had two eyes so wouldn’t walk off a cliff. I find that it helps as I don’t feel so tired after the air and exercise. And as you say you can’t compare your ms with someone else’s. Hope it gives reassurance.