Hiya- did u get ur feeling back in ur feet? Or always have pins and needles? Just wondering as that’s my main thing atm. Haven’t lost my sense of smell - never heard of that one but having said that I’m totally new to this- I’m 35 and only starting the diagnosis
Hi, I didn’t lose any feeling in my feet. Just pins and needles and pain especially when walking. All the symptoms I’ve developed so far have stayed with me. A recent one is tinnitus, never had that before but its getting annoying.
Ahh yes, sorry, my numbness changed to pins and needles altho I still feel like there’s not the normal feeling so describe it as numb lol eurgh I have a feeling that mine are going to stay as there’s been no improvement recently. Starting to try and drive again but can only do short journeys before the pains go up to my knees but I don’t think il b at the stage of hand controls for a while (if I ever need them). Just kind of trying to get to know others in my situation- doesn’t seem many local support groups in my area
Well this forum is an excellent place for advice and support. There are so many people in limbo who are waiting for answers. We all need people we can talk to. Luckily up to now my driving is relatively unaffected, just can’t leave the clutch down for long before my leg gets shaky and tired. Good thing really as my job involves lots of driving!
O that helps- I wasn’t sure if others felt like this and I’m terrified of not being able to drive as public transport is a major issue with my ocd/anxiety! I was scared to mention it to my DR incase he just said o sure we’l take your licence of u until ur 100% better or something!! I won’t be pushing it with driving until I know I’m 100% safe - think it’s my confidence just.
Hi, “Fight-to-win”, If you think your Dr. is wrong in saying you don’t have MS, you can ask for a lumbar test ( not painful and can be done in an oncologist’ office). That is the definitive test for MS. If your MRI shows no lesions, that is very good.
Please don’t give up as life can be good again. You can get past this, but you must be proactive about getting your answers. When you go to the doctor, you are the one who is paying , so YOU tell the doctor what you want. My daughter lost her sight but it came back.
Best of luck.
I’m not 100% sure but I don’t think you can have your license taken off you unless you’ve been diagnosed with something. Then you have to inform the dvla.
Thank you - that’s reassuring. Appreciate all your replies.
No worries , hope you get your problems sorted soon.
Just to tell you what happened to me I had many neurological symptoms including pins and needles, tremor, twitching, vertigo and tinnitus. My second visit to neurologists I saw a Professor he told me he thought my symptoms were psychological. I promise I wouldn’t have accepted this from anyone else. I’ve had month from hell dealing with this but I believe I’ve worked out the trigger. I’m waiting to see a psychologist and have ended up on anti depressants. I’m still waiting to see ENT about the vertigo and tinnitus. I’m telling you because it’s a different view just my story. I haven’t got horror stories from childhood etc but what I have got is history of a mum with MS who died of cancer at a similar age to me now and a life that wasn’t quite what I planned.
I hope you find your answer because despite the hell , I was glad of a diagnosis even if unexpected.
Lesley
Anonymous Ur loss of smell due to MS is a new one to me. But why RULE out is is a symptom. MS can affect ur spinal cord and brain which control all are movements and senses respectively. It presents itself in so many ways and hence is difficult to diagnose. For example, I have RRMS but never had Optic neuritis but am agonised with severe back pain and pins and needles down both legs. Everyone is affected differently and we should never forget any disability from MS will not be reversed even if the condition is held at bay. Regards
Apparently approx 26%of rrms sufferers have trouble with sense of smell compared to 83% of ppms sufferers. That’s what I’ve read anyway. I’ve not had optic neuritis either but do get the pins and needles mainly hands, feet and lower legs.
Hi not sure if this is the right place to post sorry if it isn’t! Im worried I might have ms,have been having some strange symptoms over the last year or so get bouts of severe dizziness and feeling generally odd, and with my eyes a prominent optic disc was picked up along with nystagmus, some pains in my chest and recently some pins and needles I my arms. Once it clears up I feel fine again and usually lasts for a couple of weeks. Have seen numerous specialities like cardiology, psychiatry and opthamology who have all said there is nothing wrong. Starting to feel like it’s all in my head fron what the drs all keep on saying but there is definitely something wrong and I’m worried about going to the gp again in case they fob me off again and think im nuts 
just wondered if anyone had any advice or anything at all!
Hi Dizzybella.
I’m diagnosed RRMS. MS is classed as a ‘notifiable illness’ so if you have been diagnosed there is a DVLA form you can download from their website. I’ve got to renew my license soon so took a look and it covers things like when you last had a relapse. You fill in the neurologist details and they then are meant to contact them and verify that you are fit to drive. Having spoken with my neurologist last time I actually got invited to an appointment, they said they would be happy to sign off on me being fit to drive, having seen me.
If you haven’t been formally diagnosed then just be honest with yourself about how safe you feel driving. A doctor can’t just snatch away your license so not worth pretending to them everything is okay if it isn’t. Better to make sure they know everything that’s going on so they have more of an idea about how to treat you.
Hello,
This is all very new to me. Im 32 and went to the doctors with strange sensations in my left arm back in Jan 18. From speaking to the doctor he was under the impression I was having a mini stroke and sent me to A&E. A&E found nothing in relation to stroke or heart attack but because the symptoms were still there they referred me to neurology. I got an appointment quite soon and went through a load of exercises for the neurologist and again went over my symptoms. She said she wasn’t happy with how my spine was reacting and sent me for an MRI. I got this in May and results came middle of June. I went along thinking it would be nothing and found there was quite a sizeable patch of inflammation on my brain. I didn’t expect this and she mentioned there was a possibility that I could have MS. She mentioned lots of other things but my mind went blank and I cant remember the half of it. I do not know anything about MS or symptoms or anyone that has it so it was a shock. She then told me I had to wait to get a lumbar puncture to get definite results back which would take up to 3 months.
During this time I have been trying for a baby and fell pregnant in June, found out a few weeks after the results. When I came out from getting the results I had a melt down and thought my life was over imagined myself in a wheelchair and so on, complete ignorance on my behalf. I didn’t ‘google’ anything about MS as I was afraid as google more or less tells you you’re dying at any symptom entered. I got a letter about a month later saying Congratulations on my pregnancy and that the lumbar puncture would be on hold until after I have my baby but I have to have another MRI scan then too as she had a second opinion on results of my spine.
Due to that I have completely put the MS to the back of my mind and tried not to stress, I have thought if they’re not concerned on doing this soon then why should I be worrying. Although, I went for my 12 week scan on Thurs and when going through the medical history with the midwife I mentioned the fact I may have MS. She was a lovely nurse but kept tutting and rubbing my arm as though I was currently dying in front of her and it made me feel a bit worried. I was then referred to another doctor that day and she took a look at my notes explaining my MRI / MS etc and again was trying to be reassuring telling me it would not effect my pregnancy etc but again was showing signs of feeling sorry for me. Someone also told me that day that if I had Life Insurance they pay out on MS. So all this information and people talking and discussing it I thought right this is more serious than I realise, its time to research a little. I left it on Thursday then on Friday I had terrible sensations in my arm and leg that day that put me in terrible form. I was getting myself upset and came to sit on my computer for a bit to look into MS. I have found that I probably have most symptoms that MS websites state which of course has worried me more, but I can’t seem to find anything with MS and pregnancy. I read somewhere that being pregnant more or less stops your symptoms so I thought ok maybe I don’t have it as mine hasn’t. The doc on Thursday did say it wasn’t the case, one third improve, one third get worse and the other third stay the same.
So after reading my novel and if you’re still reading (thank you) what I really wanted to know, is: -
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Has anyone been for a lumbar puncture to diagnose them? and what exactly did they find to be diagnosed with MS?
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How is/was your pregnancy? How have you coped with symptoms? Did labour go as planned for you? Does it affect your baby?
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What did you do after you were diagnosed? Do you get medication straight away and basically told this is it? Did you get any support after to cope?
Thanks for your time and good luck
Dawn xx
I’m sorry I don’t know anything regarding pregnancy and MS. My daughter has had MS for 12 years. She lives a wonderful fulfilled life. She is very active. The Drs. won’t give meds until they are certain of your diagnoses and they will have to determine which type of MS you have… There is lots of support, the MS Society in your area holds meetings every month with lunch and very informative speakers. If you do have MS believe that you can lead a good life, and be proactive with exercise and diet. I hope this helps a little bit.
Way to go. Good luck.
Hi. My history is complex I hope to keep this short as poss. 22 years ago I was exposed to formaldehyde and toluene illegally with my work in unventilated area. I collapsed one day and was paralysed. Soon after I started getting very sick. Was it ME, MS. Lupus , It turned out to be Lupus/Hughes Syndrome I also had a diagnosis multiple chemical sensitivity. Had two clots on lungs. On treatment for lupus I was worse. . Became a herbalist and got well for about 12 years. During that time had seen no consultants except one winter pretty bad. I had to have tests to see why no feeling in three fingers left hand. It wasn’t coming from ulnar damage and no real reason was given for it. Carried on with natural treatments and was fairly well until three years ago. Five areas of serious unavoidable stress for me very sick These are symptoms that started then Vision problems. Severe pain over left eye. Not helped by new glasses Tingling numbness lower limbs Pain and spasms. Thought I gad was was considered fibromyalgia but now it feels more like MS hug Balance. Last two years noticed walking like a crab a bit sideways. And vertigo Weakness and fatigue Bladder. Four times a night to pee Had blood clot on lungs March and since then nothing but stress with NHS and DWP. Trying to get help. 30 - appointments in last 12 weeks In excess if 25 emergency trips to ER on advice go or 111. As had clots and unstable angina I always gave to get checked when acute. Just last week been in ER three times. One of them five day stay Got locked out of house. Taking dog for a pee I collapsed a few metres from house. No keys,phone took three and half hours to reach my husband. In the meantime local National Trust over the road looked after me as I was having a seizure. They bought me back home in wheel chair. I need wheelchairs more and more over last few months I am told I have to wait until 25th Sep for app. My GP has been asked for more details than epilepsy?/seizure? As of yesterday that letter still hasn’t been written.that was requested by neurology at least 8weeks ago. I can’t get hold of secretaries to talk to them. Shall I try for a private visit? I am more or less bedridden right now as any activity is exhausting and collapsing walking so can’t get out anyway. Told I can’t drive. I have my own front door but it’s a flat so have stairs. Any help or suggestions greatly appreciated.
My first symptom was getting optic neuritis in my left eye - I ended up going totally blind in it for 6 days and unfortunately am partially sighted in it now. I was unlucky as normally you can get a good percentage of you sight back when the inflammation of the optic nerve reduces. I had a second issue a couple of years later with my right eye but thank god that was not the same and returned back to normal but it prompted them to run tests on me as was classed as a second relapse. I got diagnosed a year later with MS. I was put on daily copaxone injections soon after and was pretty much fine after that until a couple of years ago when my left foot started playing up. I tripped and fell landing on my face whilst out jogging - did not realise I was going to fall. So had to give that up as my face could not take that any more - the second fall resulted in a stitch in my lip. I have since progressed to foot drop so basically have to walk with a stick as my foot has become my own personal trip hazard. So really it all started for me in 2006 and only really got worse in 2016 so I’ve not done too badly. I am now on daily tablets (Gilenya) and they seem to be okay - better than injections every day.
Stress really affects my symptoms so I really try not to get stressed but that of course is not always easy - I am just coming out of a stressful 8 months or so to do with work - so that has been very difficult and my leg has gotten worse during that period. I do listen to relaxation audios and do Tai Chi (only basic) and pilates. I would really recommend trying anything to stay relaxed and calm - whatever works for you. It is difficult as with MS you can never tell how you are going to be sometimes from one hour to the next. You definitely have to ban the words ‘What If’. I am always saying to myself ‘I can do this’ and most times I can - it might not be as elegantly as I would like. Just try and keep doing what you want - don’t give in - but at the same time - listen to your body. I tend to get stuff done but need to take more breaks. It’s all very challenging but I guess its not boring. 
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I’ve not been diganoized yet but I’ve had unbearable fatigue pins needles stabbing pains in feet 24 hours a day for over 18 mths where do I start I’m waiting to see a specialist I’ve gone from working 7 days a week to nothing