Advice on symptoms

Dear All

3 weeks ago I was diagnosed with MS after a long period of going backwards and forwards to the doctors I was finally taken seriously and my MRI confirmed the diagnosis. I was given steriods of 500mg for 5 days as I had numbness/pins and needles all down my right arm, right leg and right side of my face and was unable to walk properly - this is when they realised I did not have a trapped nerve, precordial catch, allergy, chondritus, deficiency and any other thing i was mis-diagnosed with… The steriods seemed to reduce my numbness but it did not go completely - i am not really sure what to try next? My appointment with my consultant is not for another 4 weeks where we will discuss disease modifying drugs. However I am now getting symptoms down my left arm and left leg - which I feel worried about as these are new symptoms to what I had previously and I am now getting pains up both arms and feel as though things are spreading. Is this normal? Do symptoms spread? Also what can help? I am due to go on holiday in a week to Tunisia which my consultant thinks will be good for me but I feel really nervous from reading how people have suffered in the heat. Do all people experience problems in the heat? I used to be a complete sun worshiper and loved my sunny holidays - I am now feeling worried that MS may change this for me, I already feel that this illness has changed a lot in my life I am hoping that it will not change this too - and trying to stay positive. Any advice will be much appreciated. Many thanks Lisa x

Just going to say ’ hello’ as I am only about 4 weeks ahead of you in diagnosis etc.

Have you got the ms nurses at hand? And how long ago were the steroids, as they will generally only give them once in a set period of time… Which is a nightmare as I had a relapse in June, got steroids at beginning of august, and now am going through a serious relapse, again, on the other side of my body…but cannot have another dose of steroids as it is too soon.

But this ain’t about me xx

Hope they have given / sent you some info on the dmd’s

Anyway if you need a chat, or anything, give me a shout,

Sorry I’m not much help…

Jo x

Thank you - I didnt realise that you can have a relapse so soon after the steriods - I finished taking my steriods over two weeks ago - I was so pleased to finish them as could not sleep for the whole time and felt awful. Have you started taking DMD yet? If so how is it all going? I will contact my nurse in the morning and see what he says…

Did you have symptoms long before you were diagnosed? Did you get any pain with the pins and needles? I hope everything is going well for you and thanks for your response. Lisa x

Hi Lisa, and welcome to the site :slight_smile:

The fact that your new symptoms are on the other side suggests that a new bit is under attack :frowning: The good news is that steroids can stay in your system for a long time so although you’ve finished the pills (or IV), they are still working away. Hopefully this will help to reduce the effects of this new attack as well as the last one.

Heat is a weird thing. Some MSers can’t do heat at all, but quite a lot find that dry heat is actually OK - some even feel better in it. The heat in Tunisia should be nice and dry so hopefully you’ll be fine. Try not to overdo it though - when your body is fighting off inflammation, it needs plenty of rest.

Please check out the msdecisions website re DMDs (disease modifying drugs). It’s full of useful info. Please also remember that there is no right decision - just go with your first choice. And, of course, there are loads of people on here who are on DMDs, so if you have any questions, just ask!

Nearly forgot… yes, symptoms can spread. My first official relapse started at my knees down and spread over a week or so to be everything from my chest down. Relapses also sort of cascade sometimes. They start with one symptom, then more arrive one after the other (sometimes together). That’s one of the reasons that the official definition of a relapse includes the condition that it has to start at least 30 days after the start of the previous one. If it starts within this time, it’s counted as a new phase of the previous attack.

I hope you have a wonderful time in Tunisia. I’ve been twice and loved it both times. Avoid public loos (even in restaurants) if you can - they are AWFUL!!!

Karen x