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Seeking advice please..

Hi I was wondering if anyone out there could help me by offering their comments or experiences. I am 46 (well in a weeks time lol) and was first diagnosed with MS in 1993 following an MRI scan. I had been very poorly for many months with visual disturbances, disorientation, slurred speech and terrible ongoing pins and needles in my legs, arms and hands (at times it was impossible to write). This diagnosis and original treatment was carried out privately funded by my parents as I had just started university. For the next 7 years or so I had such episodes described above every 6 to 8 months or so which seemed to last for 4 or 5 weeks and then gradually went away. This continued until I had my daughter in 2000. For approximately 10 years following this (up to 2010) I had the occassional visual problem and what I referred to as a funny head and some tingling and numbness in my hands and legs but little else. I had a serious RTA in 2002 which resulted in me breaking my hip and damaging my back and spent the next 6 years suffering with chronic pain. I was on a lot of pain killing medication and due to the injuries my daughter (not quite 2 at the time) suffered PTSD. During those years life was pretty terrible - lethargy, pain, depression etc but I always put it down to the injuries caused through the accident and as pathetic as it sounds almost forgot completely about the MS diagnosis (even convincing myself that as I had not really suffered that much that the two seperate MRI’s I had each 2 years apart had been wrong).

Over the last 2 years or so I have suffered with terrible tiredness. I wake up feeling more tired than I did when I went to sleep. My GP put this down to the fact that I am B12 deficient and I now have B12 injections every 3 months (in all honesty it doesn’t seem to make a blind bit of difference). Over the last year I have been to my GP 4 times with severe pain in my face - from under the eye down to my chin and neck. Up until now this has been on one side of my face only (funnily the first two times the right side and then the left side). My GP diagnosed shingles without the rash… She mentioned my MS but because this was all dealt with privately she has never had any involvement with it and because I haven’t suffered badly she has not considered that any further. Recently I went back to see her because I appear to be having difficulty hearing - from the quick test she carried out it seems I cannot hear middle pitch and a referral to the ENT specialist has been arranged. However for the last week now I have not been feeling well. I am terribly tired - more so than the normal tiredness I feel. My ears are both hurting (she only checked them a week ago and no infection was present), my face aches with bouts of tingly and cold burning stabs and my neck aches (am feeling like a right hypocondriac here…). Having googled (sometimes the worst thing in the world to do) I came across an article tonight which mentions MS sufferers and a condition called symptomatic trigeminal neuralgia.

So my reason for this post… I have always assumed that I have begnin MS although now I am wondering if these symptoms that I have been having regularly over the last two years which have completely debilitated me are in actual fact all MS related. I wondered if anyone else has had a similar experience - especially with the facial problems. I have had many days of late where the visual disturbances (I cannot see properly, I cannot focus on objects, there appear to be black smudges over parts of my vision and vision is wobbly - sorry but only way to describe it) have prevented me from doing anything and the pain in my face and numbness or burning is excrutiating at times. Is it possible that although I have relatively free from MS symptoms for years that it all could be coming back again??

A rather muddled post for which I apologise but I really don’t know where to go next. Any comments, thoughts, advice in fact anything would be gratefully read and appreciated. Thank you :slight_smile:

Hi, I don’t feel I can you offer much advice other than to speak to your GP or MS nurse - a lot of it might be related but unless it’s a professional then who knows, maybe some relapse related and maybe now?!

I guess it’s been a while since you had an MRI? Are you taking any DMDs?

See if you can’t get a neurology appointment eh?

Good luck tho

Sonia x

I have heard benign MS is just RRMS with a long time between relapses. I would have said mine was benign cause up until JUly I had had 2 relapses in 12 years. In August my legs starting worse and I had to admit this was my 3rd relapse. Still 3 in 12 years is good odds.

I agree with Sonia, you need your GP or another medical professional to advise you. Unfortunately MS is one of those things that can never be discounted.

take care hun and look after yourself

JellyBellyKelly x

Hi, yeh there`s been a lot going on! As you do have a diagnosis of MS, it sounds like you would be best advised to see a neuro again.

The one you saw privately, is he still around and does he wrok for the NHS too, as many of them do?

There may be some meds you can take which will help. I do hope so.

luv Pollx

Many thanks for your comments :slight_smile: have arranged to go and speak with my GP tomorrow with a whole list of things to discuss and am going to ask for a new MRI to see what’s going on. Apparently my local hospital has a specialist MS nurse and as I am not registered with them at all currently am going to see how I change that.

Thanks again :slight_smile: xx