Forum

questions, questions, questions

Hi All,

I was diagnosed 12 years ago and I have had only mild symptoms - to show how how little this had impacted I’m not sure just how many ‘relapses’ I’ve had - I think I am currently on my 3rd (but could be 4th)

When the neurologist told me I had this it was completely out of the blue so everything he said past MS is a total blur. Anyway i have a appointment on tuesday with a consultant - first one in 12 years and I want a list of questions to ask. Obviously beforehand I had no idea about the need to have 2 attacked separately amongst other things. I had pins and needles in my feet 3 years before I was diagnosed but it lasted 2 weeks and went away. Is this being classed as my first attack - I don’t know.

I don’t want to go on steroids or any other medication. My new symptoms are a numb hand (well half a one, strangely down one side of middle finger is numb to little finger - the other side and other fingers are fine - weird huh) and a severe stabbing pain in my right eye (no change of vision though) and those I can live with. The most annoying one is my balance is worse - I’ve even had to use my pretty purple stick in anger - a 2.5 hour traffic jam to the airport killed my knees so I needed stick just for 30 mins (I also had to drag a big suitcase) until my knee righted itself. Thank God that my belly dancing is not an energetic style, I can still cope with that.

So my fellow MS’er peeps, what sort of things should I be asking the consultant to get a better picture of my abnormal brain!!

(some say it was abnormal before all this MS stuff hehe )

Thanks All and I hope everyone is having a good day

JBK xx

I’m working on the assumption you’ve requested the appointment. Discuss your symptoms from when you first had the pins and needles to the present day. Make a list and leave a copy with neuro for your notes. Would you like to request an up to date MRI of brain and spine to find out what could be the cause of new symptoms?? Like you say its your choice whether you take medication. All the best, Noreen

hi JBK i read your post and it really resonated with me. i was only diagnosed this year but my symptoms have been mild during the last 5 -6 years.i had a numb leg in 2008,unusual numb sore side of torso this year and a numb little patch on my face also this year.but what prompted me to write is your hand. i had exactly that and it was dx as carpel tunnel syndrome.if you look it up on internet you have described it perfectly. that cleared up after a few weeks.As for your neuro app i think you could just list the symptons you have had with estimated dates etc, also ask what he would do if was him. he may end up just chatting about new ideas that seem to coming out of late to do with ms. i started keeping a diary cause i sure as hell forget stuff easily-brain fog! i too have just had that neuro app and i didnt want any drugs which my neuro agreed with anyway. if you have some really bad symptons that inhibit your life then drugs are good but im trying to keep off them as long as i can. i may be living in cloud cuckoo land but we all have to find our own way with this illness. he doesnt want to see me for another year unless anything worrying occurs. my own doctor has been good too. do you have an ms nurse-i dont yet but they are someone you can chat too. my neuro has put my name forward so hopefully hear from someone soon. i hope that your app goes ok on tuesday. let us know how you get on with neuro tuesday

Since mine started with pain in my left eye and tunnel vision, I would be concerned about that, steroids for me the IV type cleared it for me right away. I know you said no vision problems, but I would still think about the steroids, your choice of course. Good luck!

Hi JBK

I would be inclined to make a note of everything you feel is different, even the smallest changes. This would give a good account for your appointment. I can remember most things that have happened but struggle to recall everything.

When I had my MRI it showed around 10 lesions on my brain ranging from small to large, some enhanced and some non enhanced. On speaking to my neuro, each lesion refers to an attack of some sort.

Going back 18 months before diagnosis I can remember incidents of numbness starting at the waist and travelling to my feet. This lasted about a week and completly went away. Then numbness from my waist up over completly covering my top half. This remitted after a week but some numbness remains to this day covering half both hands, from the middle finger to the little finger same as you described (it is wierd especially as only numb on one side of middle finger). Neuro said these were both attacks and visible as lesions on MRI.

I can now look back and remember different episodes that I couldnt explain at the time, its all making sense now.

To summarise I would make a note of everything and ask about them at your appointment, it will explain everything that you feel and give you a better picture of your “abnormal brain”

Good luck with it all.

Hi

I’d ask to be referred to a physiotherapist who specialises in neru stuff, as they’ll be able to help with your balance problems.

Hope you get answers to everything you want to know.

Dan