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New.....scared

Hello It’s taken me a while to take the step of joining here as I think part of me doesn’t want to admit what I’m worried about. My late father in law had ms for many years. I’ve had strange symptoms and told my husband about my concerns but he just shrugs it off and says I’ll be fine so I’m just looking for like minded people to share things with. I’ve suffered with labrinthitis on and off for many years - I’m 42. About 10 years ago I had an MRI which was all normal. Then last year I had pins & needles/numb patches in my feet and legs. That disappeared as mysteriously as it began. I went skiing a week later and I even ran a marathon in the spring. I’ve always been really active - running, circuits, gym etc. then in June the pins & needles & numbness reappeared. I had blood tests which came back normal. I mentioned MS to my dr but he just shrugged it off and said I would not have been able to run a marathon if I had MS. He did a full exam - eyes, reflexes, strength, co ordination - all were ok. So he referred me to a neurologist - appointment is next week. My legs and feet are ok now but now II have a numb hand and painful finger tips. I’ve also had headache, earache and dizziness with loss of balance. As soon as I walk about I feel drunk. The dr says its just the labrinthitis again and is probably not connected. I know there’s nothing I can do until my appt and even then it could take ages to get a diagnosis. I’m just struggling with the thought of long term prospects - I don’t intend doing any more marathons but I’d like to think I’ve still got a 5k in me!! I’m also worried about work - I’m due back in September but if I feel like this I’m not so sure.

Hey Hairbear

Welcome to the forum.

The symptoms you describe could be MS but could also be many other things; vitamin deficiencies, thyroid, anemia are just to name a few. There are many mimics of MS so the process for diagnosis is slow - there’s no specific test for it. (Though I have to say your GP’s wrong in saying you can’t run a marathon if you have MS. There are many people on this forum that can vouch for having led almost normal lives. Everyones MS is different - some are more severely affected some less.)

Take a deep calm breath and try to keep an open mind and plan for your neuro appointment. Make a succinct list of current symptoms (keep it short with the most relevant at the top). Do a date order list of past problems again keeping it succinct - the neuro will have limited time so you don’t want to loose his interest. Eg: Oct 2011 L parasthesia starting a lip progressing to L arm and foot with numbness with urinary retention - resolved 2 months later etc

I know its hard but just from experience and seeing what many others on the forum have gone through I’d hold back on your worries of having MS when you see the neuro. The risk can be that the neuro might just fob you off as being paranoid when there is a real problem. So be honest and succinct about the symptoms and leave the diagnosing to them for now. The neuro will repeat some of the tests the GP has done as well as a few others. At the end he will decide whether he needs to send you for further tests; bloods, EMG’s or scans depending on what he has found.

Most importantly try not to worry (stress can make things worse). Good luck with your appointment.

Reemz

X

Reemz has given you great advice, thought I’d say hello and Welcome. x

Thank you so much for the warm welcome. Its good to know that many people with ms lead nearly normal lives, I have only seen the most severe results so I tend to jump to the wrong conclusion straight away. I realise I’ll just have to be patient during the process of elimination whilst I await diagnosis but will take comfort from the fact that I am not alone. I’m hoping I will start feeling more normal soon so that I can try and get on with my usual hobbies and take my mind off things. xx

Hello, and welcome

You might want to tell your GP that I was competing in the European Taekwondo Technical Championships in 2009, 11 years after being diagnosed with MS. In other words, he’s talking *****!

That’s not to say that you have MS - hopefully there is an easily fixed cause of your symptoms - but GPs really know squat about MS!

Good luck next week.

Karen x

Thanks Karen - that’s really encouraging to hear, brilliant! There are many things I want to achieve and this forum has made me realise how important it is to stay positive. xx

Hi there

I had neurological symptoms from the age of 18, now 36! Was finally diagnosed at age 28. It has never stopped me living a normal life. I was no sports woman anyway but have managed with everything else. In fact I have just embarked on chemotherapy for breast cancer and my MS is being very kind to me since all of this stress started back in April. Whatever the neuro says do stay positive, power of the mind is everything, trust me.

mandyj.xx

Thank you so much - after a week of staying indoors on the sofa I’ve made more effort to do stuff today. We met friends at the beach and I must admit it was lovely to do normal stuff and talk and laugh with great friends who I know will be supportive if and when I need them. I’m now getting ready to meet up with them this evening and I must admit, now that I’ve showered and changed I feel almost normal and looking forward to it. I won’t be drinking but hey, I already feel like I’ve had a few and who knows…by the end of the evening they could also be walking wonky just like me!

Sorry, I meant to say - really good luck with the chemo - I hope you keep feeling good. Xx

Hello everyone I just wanted to drop by and say how pleased I am I found this site, everyones so friendly and supportive. Reading other people’s experiences has really helped me calm down and relax a bit more about stuff. My pins and needles and numbness has nearly gone now along with the headache. Feel fine when I’m sitting/laying still, I just have to be careful moving around as I tend to go off balance easily. And tonight is the first time I haven’t felt totally exhausted (spent most of yesterday in bed). I’m keeping my fingers crossed that things will continue to improve. First neuro visit on Friday which I’m a bit nervous of but I’ve realised now that I just have to “go with the flow”. There’s no point worrying about what might happen I’ve just got to do what I can, when I can instead of panicking.