Forum

Hi everyone - new comer.

I have to say I feel a bit of a fraud being here - let me explain. I’m 50 years old now. As an 18 year old I started to feel a bit ‘odd’. Tripped over a few times - my speech went a bit slurred - and I had terrible pins and needles in my hands and feet. Went to hospital - had several tests - was told I had problems with my nerve endings and that was something I’d have to learn to live with. I did - I’ve always worked - I married, had 2 children (now adults) & in 1997 found out by a chance remark from my GP that I had MS. Thought it wasn’t true so demanded a brain scan. It was confirmed. I continued to pretty much ignore it - it had never really affected me, so why should I start to react to it now - just because it was confirmed. It was a shock - but I never let things get me down. However - over the last few years I’ve become a bit worse (I think) and right now I feel terrible! Just wanted some advice - is what I’m feeling MS or something else?? I’ve fallen several times in the last few months - down stairs - in the road - my hands are tingling - as are my feet - and I’ve now got a terrible pain down the back of my right leg. I have to admit to being a little bit scared. I don’t know if it is a symptom of MS or not. Can anyone give me a bit of advice? Thanks Gillian.

Hi Gillian Don’t feel like a fraud for posting that’s what the forums for, to get advice, have a moan etc etc oh & by the way welcome :slight_smile: It sounds very much like your having relapses I would suggest you take a visit to your gp who can advise you better and maybe offer you some medication. Cant believe you found out you had MS by chance that is just poor communication of the lowest level. I hope you get some answers to your problems and try not to worry as that only exhasperates the problem. Sue

Thank you for your replies. I’ll explain what happened in my finding out - I was moving house in 97 and applied for critical illness cover. It was refused. I didn’t think much of it - knowing that mistakes are easily made - I just thought I’d check with my GP the next time I saw him. As it happened it was only a few days before I had to go - I had conjunctivitis and so visited the surgery. I just sad to him - ‘oh by the way - what did you say to the insurers? I’ve been refused critical illness cover?’ He just looked a bit startled and said ‘well, you’ve got MS - so I had to put it in the reply’. I laughed and said ‘no, you’ve made a mistake - are you sure you’ve read the right notes?’ (Even though it’s such a long time ago - I recall the conversation very clearly) he got the old hospital notes out from the 80s and showed me. I was stunned as you might imagine. I had a brain scan which showed 4 lesions - but I was never told what kind it was - and to be honest I didn’t want to know. I figured that I’d had it since I was 18 - whatever it was, it wasn’t affecting me - so what good would knowing about it do me? That was my way of dealing with it. As time has gone on I’ve found I’m starting to notice things that I can only presume are related to MS. The numb feet and hands, the falling, is forgetfulness a symptom? My memory is terrible at times. I did see a consultant a few years ago but he left the country and I was never given anyone else. I’m seeing my GP tomorrow - so I’m going to ask to be put back into the system to be seen be a specialist. Thanks for your advice.

Thanks Pat. I’m seeing him at 10.30 today. I must admit to feeling quite frightened. I live at 100 mph - in my spare time I run patient support group for melanoma patients and families (I know more about melanoma than I do,about MS!) and I now feel as if something is ‘going wrong’. I woke up this morning and I feel as if my feet don’t fit my skin!! And this pain in my bum/leg is driving me crazy - that coupled with a kind of ‘pressing’ feeling in my back - I feel very strange! I’m glad the memory thing is associated - people at work often look at me in wonder - they’ll tell me something and by the end of the day I can have forgotten it completely. :frowning: Thanks again Pat.

Thanks Pat. I’m seeing him at 10.30 today. I must admit to feeling quite frightened. I live at 100 mph - in my spare time I run patient support group for melanoma patients and families (I know more about melanoma than I do,about MS!) and I now feel as if something is ‘going wrong’. I woke up this morning and I feel as if my feet don’t fit my skin!! And this pain in my bum/leg is driving me crazy - that coupled with a kind of ‘pressing’ feeling in my back - I feel very strange! I’m glad the memory thing is associated - people at work often look at me in wonder - they’ll tell me something and by the end of the day I can have forgotten it completely. :frowning: Thanks again Pat.

Hi - late in the day - but I spent a lot of the day thinking and crying! I’m being referred to a consultant and my GP has told me to take another pregabalin at lu ch time. I’ve stopped going to the gym, my leg has felt so bad but tonight I went for a swim - it felt ok - I did notice I couldnt kick as well with my right leg, but I did it. Thanks for the advice re the drugs. Appreciated.

Hello Gillian

I was diagnosed at 19 but had symptoms for many year before that (I’m older than you). I have led an eventful life and travelled extensively and although I’ve had problems throughout there was nothing I couldn’t handle and I never told anyone I had MS. In 2007 I got knocked down by a mobility scooter and that kicked my symptoms in as my autoimmune system could not cope anymore and I ended up in a wheelchair. So like you my MS progression has been slow and I am grateful for this even though now I am more confined. MS impacts on people differently for example my sister had MS and her experience was very different from mine as it progressed quickly and debilitated her much earlier and she died at 60. My mother had MS but like me led an active life and wasn’t confined to a wheelchair until her late 70’s and died at 93.

It sounds like you are now getting signs of progression, as what you are describing are MS type incidents, but this does not mean that it might not calm down again. Even if it does progress there is help you can get to help you through it. There is life after an MS diagnosis.

I’ve never had DMDs but I take Vitamin D, self inject with Vitamin B12 monthly and go for hyperbaric oxygen treatment once a week and I find these ease the symptoms for me (there is no cure for MS) I’ve also been a lifelong vegetarian and a teetotaler so this may have helped too. Perhap you could try some of the above to see if they will ease your symptoms. I hope this helps.

(((((((((((((Hug))))))))))) Mary

Thanks for that Mary. It is interesting to read other people’s experiences. I only know one other person with MS and we only speak occasionally. I think the thing I’m finding so frustrating is accepting any progression at all - I’ve largely ignored it because I’ve been able to. I got married very young, had 2 children - went back to work after 5 years bringing them up - always worked since - have my dogs - our eldest now lives in France so we visit when we can - I run my melanoma patient support group - I have an elderly mum I send time with - basically I never stop and I’m thinking that this might mean I have to! I’m waiting to get an appointment with the consultant so I’ll let you know what is said. Thanks again.

Agree with Pat hun. My left leg would prefer not to work but I make it do the physio exercises twice a day and do some of the inbetween whilst im doing other things…ie at work will stand on one leg whilst waiting for my printing, talking to someone etc … Yes they prob think im mad although mosy know about the m.s and think my attitude is great. Im also back at the gym. Mighy only manage a short workout and on different equipment but its better than nothing. My aim is to do shorter workouts for now inc weights for the leg but go more so little but often. Also I find yoga very good and I’m starting Pilates Monday which I believe is good too. I used to run but no more however my gym instructor said other day said thats a blessing as running in the long term causes so many problems later on with hips, knees etc. She even said walk if you want on the treadmill but its not essential if im doing bike, rowing, crosstrainer…she feels doing something that means I struggle with the rest is not worth it… Her advice build up slowly. I struggled to get up stairs a few weeks ago…thats improved with steroids but also I feel with the physio imput too. Plesse keep your chin up and I hope things improve but don’t give in. Little and often hun x

Agree with Pat hun. My left leg would prefer not to work but I make it do the physio exercises twice a day and do some of the inbetween whilst im doing other things…ie at work will stand on one leg whilst waiting for my printing, talking to someone etc … Yes they prob think im mad although mosy know about the m.s and think my attitude is great. Im also back at the gym. Mighy only manage a short workout and on different equipment but its better than nothing. My aim is to do shorter workouts for now inc weights for the leg but go more so little but often. Also I find yoga very good and I’m starting Pilates Monday which I believe is good too. I used to run but no more however my gym instructor said other day said thats a blessing as running in the long term causes so many problems later on with hips, knees etc. She even said walk if you want on the treadmill but its not essential if im doing bike, rowing, crosstrainer…she feels doing something that means I struggle with the rest is not worth it… Her advice build up slowly. I struggled to get up stairs a few weeks ago…thats improved with steroids but also I feel with the physio imput too. Plesse keep your chin up and I hope things improve but don’t give in. Little and often hun x

Hi Gillian

I can really sympathise with you. I’m sorry you have had this news and all that comes with it!

I was living life 100 miles an hour, working 60 hours a week, travelling the country, driving 500 mile round trips in a day, spending the weekend on my motorbike or out with my friends. I went to the GP with what I thought was a trapped nerve on a Thursday, emerged from hospital with a provision dx of MS on the Saturday. The biggest worry for me was trying to adapt, slow down and generally try and work out how I was going to live my life going forward. Its not been easy, but its coming along nicely. I am lucky to have a fantastic employer and colleagues. I’ve managed to re-arrage my working week and cut down on the travelling. It turns out I’ve had MS for 8 years, but this is the first relapse that has left its mark. On a good day I can work from home, or go to a site visit, and get out on my bicycle (training for the London to Brighton). On a bad day, I get out of bed, walk the dog around the block and go back to bed, or walk into town, left leg gives up, get home and completely forget how to do something as simple as make a cup of tea. I’m pretty lucky that the good days outweigh the bad at the moment. I am really learning how to read my body, look after it, and adapt. I’d say this new approach has possible lead me to get more out of life rather than less. I don’t have children, my only dependant is of the 4 legged variety, but my advice would be to take, or at least consider any help that you are offered, and work out how to look after number one (easier said than done I know)

Hope you get an appointment soon, and that you are offered as much help and advice as you need

Best wishes