Hi everyone and happy new year. I’ve been reading on this forum for the past couple of weeks and I’ve finally found the courage to speak myself. For the past year I’ve been suffering from pins and needles and numbness in in different parts of my body but continuously in my left hand. I’ve been struggling with grip and balance too. After a battle with my doctors (which having read lots on here seems not uncommon!) I was referred to a brilliant Neurologist who seemed to piece all my symptoms together at once. I have no MS in my family and have little understanding of the disease so was completed shocked when a few weeks ago I was informed that the results from my MRI showed lesions indicating MS. I still have to under go further tests before full diagnosis but am now left feeling very confused and afraid. Even though I am trying to carry on as normal I’m constantly thinking about how this is going to effect me. I’m only 27 and have just moved in with my boyfriend of 6 yrs and am petrified how this may effect him too. Over the last week I’ve found I’m getting sharp back pains and stabbing pains in my chest, could this be associated?? I feel I have so many questions. From reading on here I can see there are many “what if’s” and “take one day at a time’s” I lead an extremely active life and hope to continue to, guess time will teach me how to control my own symptoms but are there any definite do’s and don’ts advice anyone can offer, I would be most grateful (for example alcohol? Diet?) I look forward to chatting with you and thanks in advance Donna x
hey donna, i was diagnosed in march 2012 with ms, a few months before hand i had the mri n it came back the same as you n was told they needed to do a lumbar puncture to be 100%, the amount of stress and panic i went thru was bad, looking back now theres no way i could have stopped it happening, its just a unlucky dip as it were, the only advice i can give is to continue how you are at the moment, try anything to keep your mind off this for a while, and try talking to someone or your boyfriend about how your feeling and what your scared off, there are alot of sites on the internet about ms and i would suggest you dont look at them apart from sites like this and other sites reccomended from here, it is as you say take one day at a time, and plan nice things to do to make you happy, dont feel silly about things that are running around your head about what your scared off coz believe me ive had them goin in my head aswell, but there are alot of lovely helpful people on here that can give you some really good advice aswell, just make sure you have someone to talk to, take one day at a time, try not to stress too much as that will not make you feel any better…i know its hard not to stress about this, but try a lil thing everyday to keep ur mind occupied, like reading, walking, painting, anything that makes you happy, then keep doing it, if you still have worries then talk to your doctor about it aswell as they can offer a different perspective to it, give you facts instead of maybe, i know ms is unpredictable, but it is adaptable to you, theres always a way round everything, this is something im learning myself.
i hope it helps a bit, take care vicki
Hello Donna,
The best and hardest thing to do is not to stress yourself by thinking about it. Yes it is hard not to. Talk to your boyfriend and tell him of your worries, the pain you are experiencing. You do not need a LP to have a dx, I didn’t my neuro dx me by a MRI and my history and the way I am. As you feel at the moment any pain you get you are going to put down to ms and it might not be anything to do with it. Try to relax, once again hard, but you will manage to get on with your life as there is life with ms. You may well have to ease up on some things but carry on doing what you can do, Don’t imagine the worst as it may well not happen. Listen to what your body tells you, if you feel you want to rest, then rest, don’t keep pushing yourself as a little rest works wonders. Talk and talk about it to friends and put your life into prospective as I’m sure you’ll get nothingf but support. Sending you (((((HUGS)))))
Janet
x
P.S. Forgot to say Welcome, sorry about that.
Janet
x
Hi Donna,
If you mean sensations like a pin being jabbed into you, or like a short sharp electric shock, then the answer is YES.
This happened to me about a year after onset, and a Neuro put me on Gabapentin - which fixed the problem.
You should tell your Neuro or MS Nurse.
Geoff
Hi Donna,
Welcome to the sight, but not to the MS!
We’re a supportive bunch on here and most people get a comment to their questions.
Just keep living your life as though you don’t have MS - just dont get too stressed and MS sometimes
doesn’t like hot temperatures or very cold temps.
Good luck - hope you’ve got a good MS nurse to discuss things with too.
Jen xx
Hello Donna,
I am sorry to hear that you might have MS and would like to ease your mind a little is posible. Firstly on this site you can find out about the different types of MS so that you get more of an idea of what you may be facing. I also think it helps tp know that people expereince it differently and if you have RRMS you can go long times between relapses. I was diagnosed at 19 but had it long before that so I do know the fears you are going through (as many on this site understand). Now heres the good news - since diagnosis I’ve lived all over the world, have a high level career, had children, climbed mountains, was a trekking guide and have thoroughly enjoyed my life (I’ve probably done more than non disabled people). Yes I have had relapses along the way and they haven’t been easy. I’m near retirement now and am in a wheelchair (for the last few years), but I still work and I still enjoy life. What I’m trying to say is yes the diagnosis is hard to accept, but if it turns out you do have it then please note that people are affected differently and that life can still be fulfilling and rewarding. I’ve never been provided with disease modifying drugs but there have been many advances in this area and so although there is no cure its progression can be slowed down - so there is hope. I take vit D, self inject Voit B12, I’ve been a lifelong vegetarian and a teetoller (so can’t comment on diet or alcohol) and go for hyperbaric oxygen treatment all of which I believe have helped me - so you could look into these options.
I hope this helps. but PM (private message) me if you need any further information.
Best wishes, Mary xxx
hi
Im sorry to hear that. Sounds exactly the same as I have and am going through. Im 27 too, was diagnosed in april. Just about to start on avonex. Best advice i could give is never blame yourself. The best thing i did was join this forum. Its full of people with the experiance to answer all my questions. Goodluck with it all
darren
Hi Donna, it’s a vary confusing and scared time when you fist get diagnosed. I got diagnosed in 2010. Initially like you I was concerned about my future, how my boyfriend would cope, work, socialising etc but as time goes on you start to forget about the worries and start living. It might be in a slightly different way to what you had planned but you will be amazed by the things you will achieve without realising it concerns you had last month or symptoms which were affecting you last month might not be that bigger problem next month. Wen I first got diagnosed I didn’t want to know anything about m.s as I didn’t want to worry about what I may or may not be like in the future but after 8months I needed to get my head around things and came on this site and I did the expert patients programme. Now like today I come on this site sporadically and read things but always be careful where you get advice. The best thing about having m.s is that it changed my attitude towards life and other people. I take pleasure out of little things (without realising it). I chat to anyone who stands still for long enough and I laugh at all the stupid things I forget, loose, drop. You’ve taught me something I went to the doctors before getting diagnosed about pains in the chest etc and they told me there was nothing to worry about. I don’t think they believed me. Now it looks like it was part of my relapse. Thanks. P.s I’m still drinking alcohol…but my partying finishes at 10pm rather than 2pm lol
well said Janet!
It is terrifying when going through what you are at the moment, I was 27, similar symptoms, similar stage in life when i was diagnosed 2 years 3 months ago and I felt like everything had turned upside down. I was constantly reading up stuff and on forums and i made myself so scared and broke down. I was diagnosed off an MRI, evoked potentials test and my relapses, never had a lumbar puncture. However, 2 years on, I am as active (if not more so) than I have always been and have really found my ‘rhythm’ with the MS, having not had a relapse for 2 years (last one was just after I was diagnosed). You will learn what works for you, but in general a healthy active lifestyle is a good place to start if you are one of the lucky ones (as i class myself) to be able to keep this up. Just dont push yourself too far and learn your limits. I wish I hadnt freaked out so much, but that is only natural to something so unexpected and sudden. One big lesson I have learnt is to take any help offered on board -i was fed up of physio, against the idea of counselling, didnt want to admit defeat of seeing occupational therapist etc but in my own time I accepted their help and they have helped remarkably even if just referring me onto someone more qualified to help with specific issues.
in the beginning i defo found alcohol to be a trigger for me but i find now it is more related to stress and lack of sleep. It changes constantly. Sometimes symptoms appear for no reason, but it all becomes easier to handle and you learn to spot the signs. I was turned down for DMDs early on and i was devastated thinking he had written off my future for me. Now i am relieved and wish id trusted the neuros opinion as he was spot on and i am glad that i have learnt to deal with it myself
I hope this helps to reassure you that there are a million sides to the MS story but that its not all as bad as it seems for you right now
franky x