Advice on symptoms

Dear All - I have posted this on newly diagnosed but have been advised to post this on here… 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

Hello Lisa, I am so sorry that you are experiencing such unpleasant sensory symptoms. My first symptoms were similar ( and horrible ) and I was also given steroids intravenously for 3 days - a typical treatment regime. The steroids took a long time to work for me- that is if they worked at all - who knows. My symptoms gradually improved over 3 to 6 months. However, some people see a quick improvement as a result of having steroids. How distressing for you that you have been troubled with new symptoms since starting on the steroids. It sounds like you are having a sensory relapse - perhaps a call to your ms nurse would be prudent. Many people find symptoms worse with heat but not all so you may be lucky. I hope you feel better soon and manage to get away and enjoy your holiday. To de- stress is as important a medicine as any!! Also - get on th DMDs as soon as possible. They will help a lot. Best wishes and good luck. Roger

Hi Lisa :smiley: I too am quite recently diagnosed. I haven’t had steroids so I cannot answer that part of your question. As for symptoms spreading, it did feel a bit like that for me, i started with numb soles of feet and then it spread up to my chest. Not long after, that started to go away when I lost the use of my right hand and arm, i still have trouble now after 4 months, although it seems to be slowly improving. As for the heat, I do not suffer at all. i am a chef so heat is constant for me. i feel better when it is warm, yet suffer quite badly in the cold. You may not suffer from the heat at all…in fact, a lot of MS sufferers feel better after a holiday in the sun! Hope some of this helps for you xx

Hi Lisa, My first port of call has always been to discuss any new syptoms with my MS Nurse. Yes I think symptons do spread. I was diaganosed when my toes on my right foot and a finger on my righ hand felt numb. This spread to all of my right side of the body. I had 3 days of intravenous steroids and returned to normal within two weeks. About a month later I had pins and needles in both my feet which has also spread up my legs and into my hands and forearms and face, this is stiil with me and I am now taking Gabapentin to hopefully turn off this sensation. I don’t suffer from the heat and spent a couple of weeks back in January in Cuba which was hot and humid and loved it. So enjoy your holiday and I really hope the heat is good to you. Take care Kaz :sunglasses:

I was dignosed in 2008. I thought I had taken a stroke the left side of my face and left eye were numb, I was also dragging my right foot. After diagnosis I researched a lot and googled a lot. I take folic acid between 5 and 10 a day also magnesium. This helps me and you cannot overdose on them, in fact you can never take enough of them. I try and stay away from too many meds as they come with side affects. I only take anti dep and anti psychotic drug that I need, gabapentin and co-codamol. A spoonful of honey per day also helps. Have a google on what I have suggested. Hope this helps MM :smiley:

Hi Lisa I was diagnosed beginning of 2010 and had an awful time during that summer with any heat we had. Come winter and the cold really helped me. However, this summer I took a trip over to Boston (US) and the temp there was a lot higher than here and my body responded with more energy and less pain. Don’t assume you’ll have trouble with the heat, try it and see, but bear in mind that MS moves the goal posts on us so what ever the outcome, it may not always be the case. Hope this is of some help, good luck. Simon

You’ve had lots of replies above re steroids & symptoms so I thought I’d talk about my experiences with heat. I’ve always suffered in the heat in this country - which tends to be a very humid heat. I’ve NEVER had the same problems in what I would call a ‘Mediterranean’ heat - which is a much drier heat, even though it can be hotter in terms of degrees. So for me Tunisia would be fine. Same things apply to me in USA - Florida=bad, California = good. Go and have a great time!

Thank you all for your help - this has helped me a lot - and it has been much appreciated x

Hello, I feel more comfortable when slightly cool but on holiday in a hot place, I make up for it by having regular dips in the sea/pool . Numbness disappears for me in the relatively colder water and I find I can 'jump; in the water, which is wonderful! I am going to Cape Town next week - on my own, to meet my daughter who is out there already. Am slightly nervous, but looking forward to seeing somewhere new and especially to seeing my daughter. I presume you have appropriate travel insurance and are going with at least one other person who could help you? If you have an MS nurse, I should ask for an emergency appointment or chat on the phone before you go. Good lucK. Enjoy your holiday. Gill

I know this post is very old and not sure if anyone will see this but I’ve read that a lot of you have mentioned that you can have new symptoms within weeks of original symptom but that its not classed as a relapse. I thought that new symptoms mean a relapse? Even if the new symptom appears when you are still having original symptoms? Hope that makes sense