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Following- I get mine on Monday so would quite like a heads up too lol

Am no expert in MS diagnoses but assumed modern MRIs were suffice and that is all I had to confirm RRMS. The spinal tap may allow an affirmative duafnosis but then again some declare it can be erroneous as well. Good luck and hope u get peice of mind

New to MS. Hi very upset at the moment.i am a 37yrold female up until mid May working full time in a very physically demanding job.Very active had back pain on and off that wasn't going so went for an MRI.Mri showed a disc bulge shortly after that started getting funny sensations in my right foot then left foot.Few weeks later these sensations were there all the time.Spent a fortune on Ortho consultants all agreed the prolapsed disc couldn't be doing this to my feet.Signed off work and scared then my legs started burning after any bit of activity then hands burning and electric sensations not able to do anything physical.Went to wash my hair and got a massive electric shock in back of head and down arms.Begged Dr to refer me to Neuro and saw her this week.Strongly feels it's MS am awaiting MRI in 11days time.Have since noticed right hand getting weak.Feeling very scared that something else will be bad in 11days time.Wondering how fast does MS progress live alone and afraid I will end up in the floor no family close by. Any advice really welcomed
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Hi I don’t know the answer but I’m new to this too- my numbness is going on 2 weeks now and cane on gradual. I get the impression that’s what it seems to do when reading these threads. Hopefully someone else can help you better, It’s a bit scary but in my head I sort of rationalise that I should get answers eventually but it’s different for me as I’m stuck in hospital with it. Big hugs xx

Hi there I'm 29 amd past 6 weeks have been awful for me with episodes of double vision right eye vision started to deterorate sensation lose right side flu like symptoms bad headaches amd pressure . I was put on steriods and my eye sight isn't too bad now. I had a mri which shows Demilanation on patches on the nerves in brain. I was sent away so many times from doctors amd a n e for all of my symptoms amd one day the doctor picked his phone up amd said I need to go up on steriods amd have a mri. It all could of been seen to so much sooner:-/. It's the waiting which is the worst aswell as your mind goes everywhere on what it could be and you start to think the worst. When he told me I wasn't dying but had this condition I was relieved abit that I new abit more about what was going on now I just have to wait for the diagnosis and treatment which is a pain . You really have to try stay positive as I got so depressed and low because of all this amd you have to push them as much as possible x

Hi All

Just joined this forum, looking for some research. Im not diagnosed YET, but I was taken into A&E on Saturday morning just after 8am with a suspected mini stroke. The 4 days before I have been getting, pins and needles and numbness all over. My lips nose and chin, strangely enough, were numb and the same. My lips went blue, but went back to normal before the ambulance arrived.

The guys assured me they didn't think it was a stroke, but due to the symptoms, they took me in for further testing.

After some pain killers, the symptoms had nearly all gone, just my left arm that did not want to correspond. I have problems with powdery tablets so was given some liquid ibuprofen, OMG never going anywhere near that again, so had a bad reaction to that, so they kept me in overnight.

They let me home just before lunch on Sunday.

I looked on my medial notes from my gp surgery online, which said 'Altered Sensation on Skin'
As you do I put that in Google, and ended up on this site. I will be seeing my own gp next week to discuss further and to see whether he had received the full report from my consultant, as I've no letter yet.

Also having trouble swallowing due to some dis-coordination with the muscles in my throat, am being tested to see what is causing this. I do wonder, if it is indeed MS. After reading some of the posts on here.

I am a 54 year old (next week) lady and live alone in the UK .

My very first symptoms were tingling in feet and hands This is also a sign of b12 deficiency, especially if the tingling occurs on bilaterally, on both sides of the body. Liquid b12 was the answer to my malady.

Hi Crepuscularus

Thank you for your reply :) I have B12 Jabs every 3 months, as I have Pernicious Aneamia ( can't spell today ;) hehe)

I particularly hate the tingling it gets well on my nerves. Never heard of Liquid B12, seeing my GP on Thursday so will ask and see what he thinks, unless that's what's in the injections?? One never knows  lol

Hi, my name is Emma.  I don't have MS but I would like to tell you a story about someone who has.

My daughter has had MS for 12 years. She was diagnosed, when, while on a plane she lost her sight. The plane diverted and she was hospitalised. After pursuing other illnesses, she was diagnosed by a brain scan that showed 17 lesions on her brain.  Of course, she had some weird symptoms before this time, legs twitching and weakness in the legs, which she chose to ignore. So she had had MS for some time before diagnosis. She was immediately put on medication.

I am telling you this story, hoping it will bring you hope.

Just to let you know how sick my daughter is, she  has a blood clotting disease and has had two strokes.  Since being diagnosed she has developed diabetes. She has also become allergic to things she was never allergic before.  She has been in antiphylatic shock  three times.  At times she relapses, has twitchy legs and heavy weak legs, which are treated with Prednisone. She has been in a wheel chair two times.

When diagnosed she decided to be proactive.

1. She got a chip thing  with all her medical history on it. All a doctor has to do is stick it in the computer to get all her information. She has it with her 24/7. 

2.  She learned everything about MS. She goes to all the MS meetings to learn anything new about the disease.

3.. She joined the Y and swims and exercises on the equipment at least five times a week.

4.  She changed her diet to all healthy food.  

5.  She treats herself good.  She travels abroad frequently without fear with her little chip.  She has lots of friends and goes to movies, luncheons, etc. She stays busy and never stays home and broods.

When she relapses she can't do as much exercise but boots it back up as soon as possible.

In other words, she lives a very happy and fulfilled life. 

The doctor believes her exercise and meds are what have kept her from getting anymore lesions.

I hope this helps you look at your disease and believe you can proactively help your doctor control your disease.

God bless you all and good luck.

Hi

I find posts like this so interesting and learning about what other people went through! With me, my first obvious symptom was Optic Neuritis when I was 17. At first I thought nothing of it as it was only slight so I got an opticians appointment who recommended I buy glass, in which I did. A few days later I would wake up and couldn't see a thing out of one eye. I had never even heard of MS at this point, especially being so young, so again I go back to the opticians. That's when they sent me straight to A&E and they send me straight to the emergency eye hospital. I was admitted to hospital for a steroid drip and it worked perfectly and my vision came back 100% after a couple of days. I had extreme anxiety at the time so what I did was I went back to the hospital every day for 3 days to have a new cannula inserted as I just couldn't stay overnight. Optic Neuritis did reappear a few times after this in alternate eyes. I started on Rebif medication but I am now on Gilenya as I was having relapses fairly often (according to my MRI as I didn't physically feel some of them). I have experienced tingling and numbness but they weren't "that" bad for me (fortunately!).

Big hugs!

Hayley

Hello everyone, my  symptoms began on 6/9/18 and have gotten worse every week it seems. I first had tingling and weakness in my arms, next the same symptoms in my legs, next total body pins and needles, a couple of weeks after that I got the tingling burning MS hug, next left and right eye pain (left eye worse), next electric shocks while sleeping from head to elbows, next neck and upper back pain and stiffness along with shoulders, next complete left side numbness and tingling, next burning mouth, neck, ears and face, next ice cold feet that sometimes feel like they are burning, and two days ago had a dead arm for at least 5min.

I had an MRI and it came back clear my doctor said do not worry I do not think you have MS, well I think he's wrong because I'm now having head zaps or brain fogs. I'm scared to death of this disease and I must be honest I have thought about suicide because I feel so overwhelmed with all of this physical degeneration I feel like I'm dying daily and I only have hours to live, I'm sure by the weekend I'll be in a wheelchair.

I'm going to the opthomologist tomorrow to find out what I already know (optic nueritis), I think she's going to say I'll lose my sight forever so now I won't be so surprised, I'm so depressed, anxious, scared, sad, nervous and I feel hopeless but I just keep praying to the LORD to give me strength, faith, and courage to not give up but I must say this disease is the most horrible thing I have ever felt in my body and I hate it with everything in me.

 

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 encouraged by so many positive MS stories, so I'm going to get up, start exercising, eating right and try to think positive so I can start living again because all I have been doing is sitting around waiting to die because it just seems easier than this living hell.

Way to go. Good luck.

Anonymous

Looking back I suppose my first symptom was loss of sense of smell. I just thought it was odd but nothing to worry about. Next came the foot pain and pins and needles, then numb and burning in right thigh. What took me to see the doc was an attack of vertigo. Since then the walking has become a problem and a few other symptoms besides. Still not diagnosed after 2 years of tests. Anybody else lose their sense of smell?

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 

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

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 

Anonymous

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. 

Anonymous

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. 

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.

 

Anonymous

No worries , hope you get your problems sorted soon.

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

Anonymous

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!

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: - 

- Has anyone been for a lumbar puncture to diagnose them? and what exactly did they find to be diagnosed with MS?

- How is/was your pregnancy? How have you coped with symptoms? Did labour go as planned for you? Does it affect your baby?

- 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. 

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. :)

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

I'm 60 years young. Suffered from back spasms for years. Decided to go.private and find the cause. The back MRI showed a shadow in my spine so a brain scan was requested. The results showed conclusively it was MS. It seems I've had it for around 10 years. I've always suffered fatigue tingly fingers vision disturbances and needing the loo desperately. So now it has a name. Just starting meds to help reduce a relapse. Not sure if know what one was if I did. Thinking I've been lucky do far but also thinking if I hadn't gone for my back MRI would I ever have known.

First thing I lost was my sense of taste.

A few weeks later (hey I'm a bloke - we don't do doctors ) I lost some ability on my LHS. At this point I went to the doctors (my wife insisted!) and I was sent to the hospital stroke department for a suspected TIA (mini stroke).

One head scan later and it was suggested there may be 'something' on my brain.

I've had the full lumber puncture/MRI tests and still awaiting the results - I'm hoping the neurologist has a gold envelope with the results in and revels them in a deeply dramatic voice.

The waiting is the worst part - this has all happened quickly to me compared to some on here, even so it's still infuriating.

Results day is next Thursday - off to buy a new suit for the presentation. 

 

 

Hi, I’m looking for help in how to put my self across to my neurologist when I meet her. I’ve been suffering from many symptoms for 22 months which include

tingling tongue, pins and needles in fingers, and legs, bad fatigue, pain behind my eyes, drinks seeming boiling hot when they are not , loud Tinnitus, earache, painful lymph glands, costacondritis , painful and aching feet and hands, stumbling , dizziness, inability to absorb what’s being said to me or the written word when fatigued. My blood tests always come back normal  

I have been to see all kinds of doctors who feel it’s central sensitisation and anxiety but I feel strongly they are wrong as I’m never anxious and I meditate and practice mindfulness and have done for years. The only thing I’m offered is to learn mindfulness and antidepressants, which I have refused. 

Im really worried that now I’ve finally got to see a neurologist, she will also put all my symptoms down to all in my mind and also give me no help. 

Does anyone have any ideas how I can put my self across in a way I will be heard and believed. ?

I would be so grateful for any help and guidance. 

Nikkilama

Think you need to be asking for either an MRI or lumbar puncture to rule out whether you have MS. From what you list as symptons it would seem you have MS. MS presents itself in different ways and not all sufferers have the same symptons. I for example had pins and neddles, loss of power in left limb, terrible back pain most days, etc but did not hsve any vision problems common with many otger folk. I am no medic but good MRIs should show if you have spinal or brain lesions typical of MS which don't fear can now be controlled very well with the proper medication. Gud luck.

Thanks for writing back. I’ve asked so many times for an MRI and been refused. For some reason I’m not being heard. It’s made me lose confidence .
I just want to know what’s going on. It’s scary being this ill and not knowing the reason why. The fatigue and constant pain just make living and working so hard.

AW1

Hi Nikkilama, I sympathise with you. I too am in a similar situation. Had loads of tests up to now but only one mri(on brain which was negative) suspect ppms and my gp is pushing for a lumbar puncture and spine mri but still waiting to hear about that. Fatigue and pain is dreadful but nobody seems to realise! Keep fighting for the tests and good luck. Andy

Hi there I've been so ill for 8 months severe fatigue pins needles burning in feet legs 24 hours a day if I do anything I'm like a zombie for 2 to 3 days I've just been diganoized with small nerve fibre damage but it's the fatigue I can't cope with and dizziness sickness I've just had to reduce my hours at work I think I might have MS will a neurologist diganoized MS if I have it and how can they tell

Hi all, newbie here seeking some possible support.

My story so far: I went to neurologist yesterday after being referred by GP. Frankly I feel frustrated as all hell, even worse you might say than not getting any diagnosis. In fact regardless of all my symptoms, the neurologist declared "if I was to stand up in court and advise on your condition I would say you don't have MS but I can't be 100% without MRI". BUT the thing that has aggravated me the most about that meeting is that the neurologist has suggested ALL my symtoms are merely in my head and a manifestation of me being out of tune with my body, "Dissociation" he called it - I know what that means, mainly because of severe anxiety and depression through the years. The thing is I know what's real and what's not, I have never in my life become so disassociated from my body that I have uncontrollable tremor, the main thing is the tremor is there whether I'm anxious or not.

Now I'm at a loss as to what is going on, I thought at least the neurologist might have perhaps given me an indication at least or a possibility of what might be going on with me.

I would just like some opinions anyone's further thoughts on my situation here.

I have having horrendous sensations of numbness and strange tingling in my head as of late, along with a constant tremor, I have had these symptoms for years but lately I am having more head and neck pain than usual and the tremor has gotten so severe that my legs and arms shake with any pressure put on them at all.

Here's the thing, I went temporarily blind for 6 months in my right eye at 17 years old after a bout of Optic Neuritis, that is when all these symptoms began, now at 35 years old, I have been basically hiding my symptoms all my life for fear of a diagnosis of anything - ironic now that I'm frustrated and anxious at my symtoms virtually being denied and being told they're in my head.

Anyway, my other symptoms which to me are undeniable and which have all gotten incredibly worse as of late, which through my life have never left me but are now worse than ever are:

 

- Complete Hot/ Cold intolerance

- sharp pains/cramps/spasms above groin

- Constant "pressure" sensation and pains in head

- Throat feels blocked/choked (so much so that sometimes food stops going down and I have to try wash it down)

- Easily short of breath

- "bladder" pain and spasms at night with retention/ incontinence

- weakness in arms legs and bad tremor when lifting anything at all

- Constantly urinating

- tailbone sore for no reason with what feel like jolts in my bottom sometimes

- Hearing loss, constant tinnitus (I'm almost deaf in right ear, which happened same time as going blind in right eye with O.N

- Vertigo/ off balance numerous times per day, my eyes "skip" when I try to focus and literally feel sick with dizziness.

- full body jerks through the night that wake me up

- squeezing feeling around abdomen

- Extremely itchy & sometime hot feeling feet for no reason

- Waves of feeling completely drained for no reason

- Muscle spasms in chest and tops of arms/ shoulders.

- Flashes of light and periodical blurriness in both eyes with pressure behind and actual pain behind them that makes me not want to move my eyes)

- Shooting hot pains from neck to inside head

- Numbness of limbs at night (so much so that I have to shake my arms or legs "alive" again, I've actually lost all feeling below waist on 2 occasions through my life for periods up to 10 minutes)

- Stomach constanly distending

I feel like I am actually going insane, because the only person who appears to agree with me on what is going on is me. I also feel that because I have hidden everything for so long now that nobody is willing to believe that I might have something neurological going on - because I have left it for so long after my inital O.N diagnosis. I was also so frightened back then that I refused to log it in my medical history that I lost my hearing in the same ear at that same time. I feel like I am going to suffer the rest of my life with this and that nothing is going to be done about. The worst thing, I feel it's totally my fault that I am at this loss right now in my life.

I am going for MRI but I guess what I am feeling is now a hopelessness that nothing "suspicious" will be found and I will be left to deal with this on my own for the rest of my life. I'm literally so hopeless with no progress and basiclly not being believed that I'm thinking even if something shows on MRI it will be just shrugged off as a minor inconvenience with no true negative impact on my life and I will just have to suck this up. I cant actually believe how minor and of no concern my situations seems to mean to the neurologist. I also especially feel that because I even have "Severe Anxiety" in my medical history that bar injury or blood borne disease ANY symptom at ANY time from this day forward will be declared as just being in my head.

Any supporting thoughts/ suggestions/ questions welcome.

 

Hi just a few questions please. About 3 years ago I went to see a neurologist with some symptoms I had been experiencing, mainly some areas of tingling and numbness mostly on my left side. Also some heaviness in my lower left leg and arm.I had a MRI and nothing showed up.  symptoms were put down to anxiety although the letter sent to the GP did acknowledge that I was having some nerve problems what were obviously causing me some distressing symptoms. I was eventually given Amitriptyline as there was a possibility it could be some sort of migraine, although never had a typical migraine in my life.  The numbness and tingling, particularly bad this time down the left side of my face, have continued. About 3 weeks ago I started to feel pretty bad with the heaviness in my limbs and the altered sensation on my face started soon after, I had the usual pains in my eyes, almost as if I were being stabbed in them, again mostly on the left and I did say to my husband that I thought I needed my eyes checking as my vision was dull and quite dark but no loss of sight or anything like that.  The overwhelming tiredness was what was really different and noticeable, in from work, eat my tea if I felt hungry enough and then bed, sleeping for 10/11 hours but not refreshed in the morning. I find my words come out a bit strange but I put that down to probably not really listening to the conversation because Im just so exhausted. I appear to have come out the other side of it again now, only thing I have is a twitching eye but the altered sensation has come back to normal and I'm not as tired. I have kind of learnt to live with a lot of hese symptoms but feel the last episode was by far the worse that I have had. Like many the thought of going through all the appointments and tests is very off putting. What I'm really asking I suppose is do these symptoms fit in with the MS remit and should I go along to an appointment that I made to see my GP (not until the 16/11) now that I feel better, Ive decided that the Amitriptyline are a waste of time so I'm slowly reducing those. Just out of interest I also have an underactive thyroid and low Vit D3.  Thanks 

Mollymoo11

If your condition is back to normal and you have no noticeable disabilities then it seems very unlikely have RRMS. I am no expert however but your lack of Vit D3 maybe responsible for some of your problems. I have RRMS and apart from medication to slow it down I also take a Vitamin D supplement long term.
Regards

Anonymous

Hi, it’s my first post. Three weeks ago I had awful pins and needles in both feet and hands and during the night had them all down my right side. Plus I had tingling/twitching in my cheek one side and above my eye the other side. They were painfully strong and lasted 10 days. This led me to look up my symptoms which suggested MS could be a cause.

This year I was diagnosed with trigeminal neuralgia (and a benign brain tumour). This is more prevalent in MS patients, apparently.

Looking back I realise that I have suffered with crushing chest pain, several times. No cause identified.

Full body pain.

Had sudden hearing loss, suspected virus, it cleared up with steroids.

Have problems with my bladder, interstitial cystitis. Plus bowels.

Have loads of cramp and more recently awful leg and hand spasms.

Had eye problems and pains.

Had investigations for dizziness.

Swallowing difficulties.

Chronic fatigue.

Numb leg.

Memory problems.

Heavy, lead-like legs.

Voice problems.

Electric shock type pains in my back, radiating to my arms and legs, three times.

Tinnitus.

Thinking problems, pauses, can’t think straight, remember words.

Vibrating ear drum.

Tremor in my hands.

The only thing I don’t have is drop foot. Most of my symptoms have been investigated and no causes found. I have complex regional pain syndrome, fibromyalgia and other conditions. I had an MRI on my brain in January which showed the trigeminal neuralgia but nothing else. Last year I had a spinal MRI which showed some narrowing of the formina but nothing else.

I have been referred to a neurologist for help with medication for my TN. The doctor will also let them know that I have all these symptoms, which I think could be MS, although my doctor doesn’t think so because of no lesions showing up. The doctor thinks these problems would be classed as suspected MS if it weren’t for my other conditions.

I have been having symptoms since my early 20s and I am now 61. I wonder if I will ever get to the bottom of all of this? The scariest things have been the crushing chest/back pains (ECGs normal) and the electric shock pains in my back/arms and legs.

Does anyone else think it might be MS? I have permanent pins and needles in my hands and feet now.

Thanks for reading all of this post. Pain-free days to you all. X

No Anonymous it does not sound like MS if you have no lesions and as MRI now seems to be the chosen tool to diagnose it. Your symptoms may be due to the Fibromyalgia you talked about. You did not mention if you are on medication. Vitamin D supplement may also be of help.
Regards

Hi Bracknagh, thanks for your reply. I am not taking any medication. I could not get on with Carbamazepine, Baclofen or lyrica, they all affected me badly. My doctor would not give me anything else as she said that the neurologist would be able to help with that. I take a multivitamin/mineral, nothing else! 

I find it difficult to make my way around this site and I keep finding myself on old posts, is there an easier way to find the latest posts?

Kind regards, Ang (previously anonymous)

Hi all, I still think my symptoms could be MS so I will wait until I get my appointment with a neurologist and maybe have another MRI and/or a lumbar puncture, however painful that might be!

Could anyone tell me what their worst symptom is please?

Kind regards,

Ang (my first post was sent as anonymous - accidentally)

Hi just googling my odd symptoms that have been getting worse for the last six months and are a repeat of what happened for about a year 25 years about!

waiting toe see a Neurologist in March, (have been on the waiting list for 4 myths.)

25 years ago had left sided tingling, pain,  numbness which left me unable to work consistently for a year, weak tired etc but symptoms gradually receded.

this time round started with unexplained pain in left side under left rib cage and through to shoulder blade. Numbness pain up into jaw down left hand etc. Rushed into hospital with suspected heart issues but these been ruled out.

left with threat pain which never really goes away but also tingling numbness that floats around hands face left leg,  itch buttocks and today for no reason very shaky hands for half an hour. Suddenly get very tired like someone had pulled a plug and energy drained out. Sometimes pain so bad have to sit up in bed. Like migraine in left chest area which seems to radiate out to all left side and usually noth hands. Sometimes walking now having pain in left groin area and then sometimes both big toes!

Some thoughts have been shingles in left side chest?

pain in chest feels like tight band along with the odd sensations? Every time I google symptoms I see a lot like MS symptoms, not worried about what the diagnosis is just want to know how best to work around health! Not having a diagnosis and knowing body is a bit off is frustrating as been a very very active 60 year old and over the last year having to rest regulars throughout the day!

Any thoughts.

thanks

Hi All

Please could I ask for your help in what to say to a private neurologist on 29th November. I am undiagnosed and only realised that this could be MS after 3 years of being treated for 6-7 separate symptoms. 

I have numbness &tingling on my left side right up to my buttocks.I have numbness in my right foot. Had this years. I have tingling and numbness in my hands. I have vertigo. Incontinent unless I take medication, constipation, I have muscle pain and cramps. I was diagnosed with fibromyalgia in 2016.  I have anxiety and depression which I take antidepressants. I have the concentration of Dory in ‘Finding Nemo’. I am 48 years old. I feel so ill and I am struggling to keep my job in HR as I am off sick a lot. I work in the NHS! I put my symptoms into a symptom tracker on the web last week and MS came out as the top diagnosis. Hence I have booked for a quick private appointment. 

I am scared yet want to know what’s wrong with me. Please can someone give me some advise for when I see the neurologist.

 

thank you in advance.  

I have MS

Hello and welcome to the new posters. 

Can I suggest that you start a New Thread (see the button above the list of existing threads)? You’ll get more answers that way, it’s very easy to miss posts tacked on to the end of an old thread. 

Dstanding - March next year sounds like a very long way off. If you are really suffering, try seeing your GP and asking if they will change their referral to an ‘urgent referral’. That way you might get a slightly quicker appointment. One problem with MS is that so many symptoms are shared with other diagnoses, so it’s impossible for anyone besides a neurologist to say how likely MS is. 

PDiddy1 - preparing for a first neurology appointment is mostly a case of writing yourself a timeline - what happened when, whether symptoms improved and whether anything has stayed with you. Also write down any questions you have. Don’t be afraid to get your list out. You want to make the most of this appointment especially if you’re paying for it. It’s a good idea to take someone with you to the appointment, sometimes ones brain turns to mush and remembering what’s said has dissipated like mist as you leave the room. If the neurologist wants to run tests, ask if you can be referred back to the NHS for them because that’s the most expensive bit, hopefully the neuro you see will have their own NHS practice. 

Good luck to you both. 

Sue

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