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Diagnosed this week, please someone be there for me!

I feel so alone, I was diagnosed days ago and can’t quite believe this is happening to me. I’m so scared about not being able to walk, or play my piano, lose my job and friends at work, not be able to go to gym… How overwhelming! I don’t know of anyone else with this, why is it when I have told people they put their hand on my shoulder and in a sympathetic voice say how very sorry and how I am a poor thing… Is it going to be that bad!! Are these symptoms going to get so bad… Well maybe it’s better I don’t know the answer to that question. Did anyone feel like they would rather die than live with this? I ride a motorbike, I told my husband that at least if I come off and died I won’t have to cope with being disabled. I know I sound like I’m feeling sorry for myself but I really feel very alone and incredibly distressed… Please help me! Thanks Tre x

Hi Tre, I’m so sorry to see you have been diagnosed with ms. I’m afraid that I have also been diagnosed but I have RRMS and feel incredibly lucky. Firstly, can I tell you that life doesn’t stop, in fact very little changes and the things that have to change are amended and you soon learn to adapt. Not all msers are disabled. Yes, we all have aches and pains, but we learn to live with them and get on with things. There are things that I used to do that I don’t any more but I have new interests that I wouldn’t have dreamt of before ms. You need to inform the Dvla of your dx and check any critical illness insurance policies as ms is claim able illness. People with ms can lead long and happy lives, the press only ever portray the worst case scenario, which believe me is rare. Take time to accept your dx. Their are lots of places to find help, but please stick to the ms society or the ms trust for reliable information, the Internet is full of frightening rubbish. Thinking of you, I’ve been there, only got my dx in March this year, Chis

Sorry Tre, forgot to say, I don’t know where in the country you are but I found my local branch of the ms society very helpful. Feel free to pm me if you think it will help and remember that there is no such thing as a silly question here! Chis

Hi Tre,

You are so newly diagnosed that it is completely normal to have these thoughts and feelings.

My diagnosis was a complete shock to me and i went into complete denial for ages. Theres no way i would even come on here as i was so scared to read what was going to happen to me.

A diagnosis of ms is not the end for you but you may need to make changes in certain areas.

Please remember everyones ms is personal to them (bit like a fingerprint) - it affects us differently.

Getting the right medication to help with symptoms makes a lot of difference.

My diagnosis was 7 years ago but looking back i have had it definately for 13 years and possibly longer. I still have full mobility as i did before. I have ms symptoms though. I still walk, swim, run round with my kids and get on my husbands nerves! lol!!

If you have relapsing remitting type of ms you may be offered DMD drugs which help to reduce relapses and hopefully slow progression. The DMD is working well for me.

You don’t say what your symptoms are but you may never have to stop doing anything you love.

Ms does not stop you living. Carry on living how you have always done and just adjust things as and when you need to. You can live a perfectly normal life.

If you are having thoughts of death you may be depressed which is also common at diagnosis. If you carry on like this you may need anti-depressants for a little while to help you get through this difficult time or possibly CBT. Don’t feel scared to talk through your feelings - it helps to offload.

This site is fantastic to moan/rant /rave to people who understand. There is lots of support on here so post away and people will help where they can.

Take each day at a time, one step at a time and you get there in the end.

Best wishes

Teresa. x

Chris, thank you so much for replying to me so soon… That is so helpful it made me cry! You are the first person I have spoken to who also has this. I think I too have the RRMS type of MS. First symptoms were 14 years ago, it’s just taken this long for someone to tell me what’s happening to me isnt just anxiety related, or psychosomatic. You start believing that you must just be mad! Yes, aches, pains, pins and needles and now a foot that has decided to flop when I walk. Oh the intention tremors are also not very nice! Hopefully it is just a relapse that I am currently going through, but I must admit I am only just learning what the condition is let alone being anywhere near fully understanding what it is all about. Thank you! Tre x

Oh Teresa, thank you, sorry I saw your post after writing reply to Chris… I too am a Teresa, what a coincidence! Again thank you so much for your reply, that is so very useful… And another person I have now spoken too… I am not alone! I don’t know what to expect as its such a blow and your posts have been a comfort, really!! Thank you! tre x

Teresa,

There are now 3 of us on here! (Teresa’s). And possibly more that are lurking and not posting! lol!

You are never alone with all this! we are your new family!

Its all new to you but you will learn a lot on here. It will take quite a long time to come to terms with the diagnosis but when you are ready it’s good to get some knowledge about the condition.

Teresa. x (one of them!!!)

Hi Tre Just wanted to say hi. I was dx in June and it can feel overwhelming when you first get your diagnosis. You need time to adjust and understand what it all will mean to you. Coming on this site is a fab source of support and helps you learn more by just reading about others story’s. One thing I have learnt is that life carries on and is still good. You might have to make some adjustments from time to time as ms affects everyone differently but don’t give up hope that you will have to give up all that you love to do. Fingers crossed your story will prove to be a positive one. Mish x

So what will we call ourselves… The Teresa’s I mean… ! Well, I am known as Tre to everyone who is my friend and family… And that now includes… As you have been so kind to accept me… My new family on here! Mish, how long did it take you to get used to it all? Has it sunk in yet?? Does anyone else have intention tremors?? Sometimes I can’t write as hand takes a moment to work! I find if I will my hand to work it then does, it’s so strange. Thank you for coming to my aid, my husband has been wonderful but he can’t know what it’s really like, I don’t “look” any different to family but I certainly feel it, in many ways… And all day long. Will mess stop these feelings? What is best to take for these nerve pains by the way?? Thanks Tre x

Should have read “will meds stop these feelings!” not mess!!

Hi Tre, i am not dx yet so still a limbo lander waiting to find out if it’s MS or something else.

I too have tremors and sometimes can’t write, for the nerve pain i have been given amitrypiline this helps with

shooting pains in my head, legs and constant nerve pain in my shoulder.

Sonia x

Hi Tre, and welcome to the site

I just wanted to add a bit to the other replies - I was diagnosed 14 years ago and I’m still going strong. Life with MS really can still be good

The best person to talk to about meds is your MS nurse (did you get contact details). There are several options for nerve pain - there’s no need to suffer!

Karen x

Hi Tre In answer to your question, i guess I thought I had just accepted it straight away, no tears, worries about the future or anything. Just thought well I had better get on with it and worry about the future when it happens. The neuro did say that I may find my emotions may be affected in that I may laugh at things instead of cry and visa versa although I like to think that’s not why I reacted that way. However a week ago I did have a moment (in the dentist car park of all places) where I just suddenly felt I was falling apart and no one could fix me. It was one of those days where everything seems to happen at once but I just started crying and didn’t stop much for rest of the day. It hits us all differently and there is no right or wrong way to react to your news. Try not to bottle up any emotions and remember to come on here for support if you are feeling low. Someone will always be around to cheer you up. : ) Mish x Ps I don’t have intention tremors but do have spasms in right hand making writing difficult…soooo annoying! : )

Hi Tre I am another Teresa on here too. It gets very confusing for others when Treek and I share posts! Sorry for your recent dx, I know how much of a shock it is. I was only dx last December. Like lots of people have said, it is not the end of your life but you must adapt to what is happening to you. It is so difficult atm so take it one day at a time. Do not think too far ahead, no one knows what is coming around the corner. MS is not the end and you still have loads of fabulous,happy times ahead, believe it! This forum is so wonderful, everyone is always happy to listen and help. You can rant and rave about how you feel and people will not even turn a hair! I hope talking to us will ease your mind and that you have lots of support at home. Please stay in touch. Teresa xx

OMG you are all so hopeful… Thank you!!! It is so helpful to talk to people who know what I’m going through… It’s such a big help, thank you! I’m on sertraline, can you take amytriptyline with it? I only got the news this week… I haven’t seen anyone yet… Just have to wait until the consultant can see me. I’m sort of in limbo at moment as I had to go privately as NHS lost my referral letter. Long story but I have been to.d I will need to wait 6-8 weeks to see someone. I might go back to Gp because the nerve pain in my right arm and leg is horrible. Does it go on its own? I’m new to this I don’t know how this relapse and remission type ms works. Speak soon Tre x

Hi Tre,

We can all still be Teresa because…

I am a tortoise…

Tree65 is a monkey…

I wonder what you are? LOL!

But my closest friends/family call me Treek. My older sister could not say my name when i was born and came out with Treek. It stuck and has been with me all my life.

Treek/Teresa. x

Will have to be my bunny from me… I will upload the pic later… She’s adorable! Tre x

My loved ones always call me Tree! Teresa xx

I’m not a Teresa but welcome to the family - I was dx’d in 2003 but had my first ‘episode’ in 1989, I wasn’t troubled again for the next 14 years until a severe relapse put me in hospital for some weeks and lead to a diagnosis.

A diagnosis isn’t the end of your life, it’s the beginning of a new phase in your life. There’ll be ups and downs but you WILL get through - look at your diet, look at available treatments via your MS nurse, consider LDN which has helped some people (not all, it didn’t help me) and relaxation techniques (stress is rubbish for MS).

There’ll always be someone available on here to answer your questions and concerns - pull up a chair and pour yourself a brew !!!

xxx

Im not a Teresa either, but welcome to this forum Teresa.

I am so sorry you have been diagnosed with MS. I am a limbolander at the moment so am not sure how I will feel if/when I get diagnosed (will probably be PMing you for help!!).

Please feel free to rant and rave or ask questions here. There are many amazingly knowledgeable people on here to help.

Good luck and I really hope you contact your MS nurse and get some support and help with meds etc.

Paula xx