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AW1

Hi,I went to my gp with symptoms without looking into what it could be first. It was the gp who said possible ms. He did blood tests then sent me to see the neuro who said more likely Parkinson's. Had a datscan and MRI and more blood tests. I was supposed to see the neuro for follow up in April but haven't got an appointment yet.

I would get your GP to chase up your neurologist appointment.

 

Marjie xx

AW1

I've already tried that Marjie, still didn't hear anything. I'll have to try again.

I'm 28 and newly diagnosed (this is actually my first ever forum post!) and have come to realise that I've had quite a few symptoms over a couple of years - always made excuses for them or put it down to other things.
Frequent pins and needles/numbness (I teach little ones and often sit on the floor so didn't see this as anything strange), strange pressure type headaches, fuzzy vision, tinnitus, strange 'rubbery' feeling in my arms, fatigue and memory issues. It's only when I put them all together I wonder how on earth I had never suspected anything!
Anyway - about 2 months ago I went totally numb from my neck down in a matter of hours. I popped to my local walk-in centre expecting anti inflammatories, and was admitted straight to hospital for nearly 3 weeks. I was diagnosed with transverse myelitis at first, then had my diagnosis of MS about 2 weeks ago.
Amy x

Hi, 

  New here and waiting for diagnosis, about 12 years ago i was diagnosed with fibromyalgia , i had very funny sensations like my back feeling wet, or that i had something on my top, pins and needles in my hands arms and feet, chronic tiredness, pains in my legs and arms, just about everywhere, i had several falls and consequant breaks to my feet and ankles, about 18 months ago i started to wake up in the early hours of the morning feeling like i had a tight band about my chest and upper body, the pins and needles are now constant, 24 hours a day every day, just sometimes worse than others, i was finaly referred to a neurologist 2 weeks ago, but being the nhs no appointments until middle of december, my memory is also a hell of a lot worse in the last year or 2, hopefully will get some answers very soon.

Welcome Marie.  It is a long journey before diagnosis, and I am talking from experience :(

Best wishes,

Marjie xx

Hi everyone, first of all I wanna apologize for any grammar mistakes i make, I'm not from any English speaking country. My mom has me, she was diagnosed like 5 years after I was born, and I've been kinda scared lately because of some symptoms ive experienced, about a year ago I lost sensitivity on my big toe and it still feels weird like half of the toe went permanently numb, I play basketball and I've lost that toenail like 5 times (I lost it a few days ago) because of the shoes I use, my uncle who's a pediatrician said it could be some nerve damage on my toe. Also on November of 2016 I went to get new glasses and from then I feel like my myopia has progressed, I also get headaches from, time to time and lately I been mixing up words when I speak, not a lot tho. Should I be worried? I feel like I should go to the neurologist who treats my mom to get tested.

Thanks for taking your time to read this and I'll gladly take any comments you have

Andrew85

 

In your position it is not unnatural you have some concerns as neurologist always link MS with hereditary.  However there is no guarantee what you have is attributed to MS.  Many folk on these forums, myself included, know that MS presents itself in so many different ways and that there are very few symptoms which are common to all sufferers.  For example, you speak of eye problems but I have no issues at all in that area and it is quite possible your probs are not related at all to MS.

By all means go to your mum's neurologist and ask him to get the tests done for you.  I think mentally it is better you get conclusive evidence if you have MS or not.  At least your mind will then be set at rest.  Good luck and keep positive.

 

Regards

I haven't been diagnosed yet, i'm waiting for my appointment to see a neurologist. I went to the doctors because i had and have a feeling on the bottom half of my left leg, it feels so sore when it is open to the shade or a breeze, its gone on for about 5 yrs with my leg. A couple of years ago it started on the lower part of my left arm. and then the left side of my face last year. It was occasional but now seems to be constant. As the weather is starting to cool down,I am suffering constantly. It feels so sore but touch the area and it doesn't hurt. I thought the doctor was just going to give me some cream or tablets and it would be fine. Never thought it could be or should i say maybe something more serious. I'm 51 and after reading about MS, i think i may be too old, but i realise that i have had the pain for a few years now but just thought it was a sign of getting older. I'll admit i cried when the doctor said what he thought my symptoms indicated. I realised it was because i really didn't have any idea  what MS is. i now know its going to be a long and probably frustrating road but I have a can do attitude and if this is the way my life goes, then i realise I'll have adjustments to make. But maybe I'm getting ahead of myself and my symptoms could be something else.

Good Evening all:

I have had a roller coaster since last August. I have lost part of my sight in my left eye. I was rushed to hospital and put through  many hours of MRI. I was told by a pack of new doctors I a optic neuritis attack possible MS.  The doctor found three lesions. In March of the next year I had another attack on my left eye. Another MRI  the doctor found two more lesions . The Nero doctor confirmed MS. I just had my third attack on my left eye now the doctor is sending me to an eye specialist putting MS on back burner. I am really confused now . Has anybody have symptoms from their eye?

nana,  i had optic nueritis 17 years ago and was told at the time that 50% of people who get this go on to develop MS.  i have had a few symptoms over the last 17 years but didnt really think anything of them as they disappeared.   i am now having trouble with my left leg that isnt going away, referred by a physio to a neurologist had numerous MRI scans and a lumbar puncture (which i have to say didnt hurt a bit) and was last week diagnosed with MS. i am returning to my neurologist for further details as to the severity etc

Hi I really could use some advice. In 2011 I was diagnosed with Parkinsons disease. However my symptoms appear to be more like M.S. I have numbness in my toes legs and head mainly at the back. I'm constantly in pain joints and muscle spasms my vision is constantly changing etc. The night time seem the hardest as soon as I lie down the nightmare begins. I can only describe the feeling as having a dead leg of sleep leg that's starting to come back to life. Like when your leg goes to sleep well the painful bit when blood starts flowing again. Horrible is not the word. It really is interfering when I'm finally asleep (if I get to sleep lol) I'm dreaming and feeling this pain too know. No escape at all. Joking apart I am on parkinsons meds, but they're not really touching it. I feel like I'm going mad. I'm not hoping for diagnoses here I'm just wondering if anyone else has experienced the same situ.as me Help!!!

Hi I am new too, and very sorry for the difficult experiences you've all endured.  I haven't been diagnosed. I'm pretty terrified lately and have a host of doctor's appointments for next week. It seems early and like it could be a myriad of different issues, but after reading a lot of first symptoms here in addition with researching a lot of autoimmune diseases that fit my symptoms, my gut tells me it's MS....My symptoms: 

My hands and feet "fall asleep" (what I called tingling/numbness when I was little) at least once a day, always during sleep and usually once before that in afternoon/evening for the past 6 months? Thing is, I don't know because I'm pretty laid back, I guess not that observant, and was also in grad school last year with an emotionally draining job, so I attributed a lot of symptoms to that. Currently, a lot of things have accumulated and I am realizing that something is wrong, hence, the doctor's appointments. I had thought the numbness was rheumatoid arthritis or carpal tunnel syndrome due to working on my laptop while in grad school so much. But.....I also have chronic fatigue and some days it is extreme. I am 30 and highly active and (before this) pretty healthy, so it stands out when I am, for no apparent reason, absolutely exhausted and can barely function (some days much worse than others). I get tension headaches every so often. I have had severe muscle soreness lately (also, not related to normal reasons) in my back and neck and legs. I did a harder work out than normal (weights/strength training instead of my typical cardio or yoga) and it took me longer than it ever has to recover. I could hardly walk for days. It was odd timing because I would say it was just the workout but this was after I noticed recent extreme fatigue/muscle soreness/tingling etc ....Idk if all of these are related or not (although, I tend to think everything is holistic and related) but I also recently got canker sores in my mouth (not outside of, but under gums, I NEVER got these before and I just got 3). I have digestive and mood issues. Additionally. I'm usually very good with words but there have been many recent times where I feel like my brain pauses and I pause for a very long time & can't think of what to say/what I was going to say and find it odd/get very frustrated.  It stands out to me every time as not being "like me" and has only been in past few months. Also, short-term memory issues.My brain is so much slower at processing. Nothing with vision except dry eyes and recent trouble seeing at night. I just got glasses for the 1st time..my left is still great 20/25 and my right is 20/40. I have lost my grasp on several things in past few months and run into something lately by a few inches but again, I noticed that it's strange and happening more often as I've always been somewhat "spacey" and clumsy. 

Sorry for writing so much. I would love any feedback if anyone had similar issues and maybe it was something else or if you think it's MS and I also wish you all the best. <3

kate,  i am also new to this and have recently been diagnosed, i have however read about "over" excercising and the problems it can cause.  might be worth looking into

i had optic neuritous 17 years ago, saw a neurologist at the time with no concerns, was positively diagnosed 28.9.17 but like you looking back i have had severel "episopdes" that could be classed with MS.  spasms in my hand and back, these disappeared after a few days, i get what i call "floppy leg" now, where after about 20 mins of walking my leg will not do what i want it to do.  this hasnt disappeared.  still waiting for my appointment with the neurologist since the letter saying i have go MS

I have recently been to my GP to discuss a number of symptoms I have been experiencing off and on for some time. However, recently they have increased in number and severity. I have been on Citalopram 20mg for a year or more as well as being diagnosed with moderate to severe Obstructive Sleep Apnea. My recent symptoms include issues with my balance. I am definitely more clumsy and have bumped into many walls and doors. I have cold and painful feet. I have experienced random muscle twitching in arms and legs. My speech at times is muddled in that I might stutter or have difficulty pronouncing some words, particularly those that end in 'rs'. Others include extreme fatigue and muscle aches and pains especially in my legs.

Now, I have always linked every symptom to either work or simply the horrible effects of shift work as a paramedic. However, I am now suspicious that there is something more to it. I was assessed by the GP who carried out a full cranial nerve and neurological assessment. Everything was OK apart from my balance. Walking one foot in front if the other I stumbled baldy. Again, I put thus down to footwear previously.

I am 34 years old. I am curious to hear from others on their thoughts.

Thanks.

Hi trueman,

i had optic neuritis in 2000, I saw a neurologist who said he could see no signs of any symptoms, I was diagnosed last week, 17 1/2  years later, looking back I have had symptoms but they have gone away so I denied that they were MS, now I have what my friends have affectionately nicknamed floppy leg when I have walked for about 15 minutes, this isn't going away so  I knew I needed to do something about it. The problem I have now is, I think,  more psychological as every twinge pain funny feeling I think oh is this it, is this the MS whereas before diagnosis I would just ignored it.  Appointment with consultant in about 3 weeks to hopefully discuss findings and options.

Hi, I am new here and am yet to be diagnosed, my story began about 3 month ago, I suffered with a severe urine/kidney  infection, I went to my gp and I was successfully treated with strong antibiotics, At the same time I started with numbness on the side of my left breast which moved to my right side and gradually the numbness spread all the way down my right side, it then went onto spread across my lower abdomen saddle area and left leg. I also then developed tight band feeling around my upper torso, just below my breast all the way round, At the same time I had bladder and bowel problems, had no feeling as to when I needed to go, my right big toe dragged on the floor for a couple of days when walking but that cleared up. When ever I got in the bath Wowzer that was weird numbness became very prominent and muscles would become stiff. While all this was going on I also had burning pain in my arms. After 10 weeks the numbness started to fade and was replaced with vibration in my legs and lower arms and hands I feel like I have been in a boxing ring for the past 3 month. I forgot too mention the fatigue blimey never known fatigue like it, anyway my gp referred me to neuro, and he sent me for MRI of head and spine was in the scanner for 90 mins I am now awaiting the results and it is the not knowing that is worse than anything what do you guys think, does it sound like anything you have all suffered with, like to mention I have only had brief episodes of blurred vision lasting 10-20 seconds, I also have had occasions when my legs have felt wet when they are not very strange sensation. Any input would be greatly appreciated Tia. x

Hi all 4 the last 3 wk know i bin going dizzy and i dont know y

Will bin to the hospital today got to have a fill MRI on my head and spinal cord know

For a week and bit bin finding it difficult to do my job because of my legs they are so heavy

Another thing that keeps bouncing back to my mind, when you are in the 'watch and wait part - pre official diagnosis - is your car insurance affected?  At what stage must you inform the DVLA and if/when you do what kind of impact does it have on your policy?  All these questions!  Holiday insurance too, I suppose?

Hi Labradorlove

When you get a firm diagnosis of MS you are supposed to inform the DVLA who will put your car licence on a 3 year (I think) renewal cycle. I have not gotten round to doing so yet myself, after being diagnosed about 6 months ago since I just got a new licence a year ago. I notified my car insurance but it did not affect my policy. As for travel insurance it may result in a higher premium but some companies can easily accommodate.

Hope this is of help.

Regards

Hi all. I am pretty new this whole ms stuff. I am not yet diagnosed however the neuro suggested its the most likely cause. Started with a numb mouth. Could feel any food in my mouth. Numbness and tingling spread to rest of face and eventually down left side of body. Arm and leg. So far its been mostly an annoyance not having any feeling in left side. I have an MRI scheduled next month. Cant wait til its over with. Have had symptomsfor about 3 months now. Age 33-male.
Oh...fatigue too

Update... I was diagnosed with rrms on Tuesday, so my waiting is over!  I will be starting on avonex very soon, then once that beds in my plan is to continue with work.  

I feel ok about the situation.  The fact I'm on 40mg fluoxetine daily maybe helps!  However, I'm  finding when I'm telling friends and family that their reactions are as if someone has died!  I find myself comforting them in a way.  Very strange.  As a result I'm  wondering if I shouldn't be so open about it all.  

It's a funny old world.  This is a path I never planned to go down, but here we go...!

Hi,

Can I ask if the depression was a symptom long before you suspected MS?. I am awaiting an MRI at present. On antidepressants at present and have been for some time. It's quite bad at present. I've had a course of steroids recently also.

My balance and Co ordination can be awful at times. Painful feet and pins and needles care other symptoms.

You must be happy to know now though?

Hi all. Well I got my MRI results today it sayin my brain is NORMAL that's a fist lol. Then it's sayin I got a old (incidental thoracolumbar syrinx)
So is they a good chance that I ant go MS???
I don't know what do you think anyone

Freeman86

Interesting results. Did you have a contrasting MRI where they scan and then inject a dye and scan again? The brain I assume will show lesions in almost everyone but it is how active they are is important and that is what the contrasting dye will confirm.

When I was having tests they also mentioned a syrinx but eventually they tied it down to RRMS. I have been on medication and high doses of Vitamin D and at my last appointment with my neuro consultant she reported my MRIs now looked a lot better, with lesions essentially inactive, and thus there may be some reverse of my condition. Not sure if it is the DMT medication or Vitamin D.

Hope you get some assurance one way or the other soon.

Regards

Bracknagh hi.
No they didn't give me the dye. And they ant looking into any further so went to see the Doctor they put on (nortriptyline) to see if it's help. If that Dow work he will referred me bk to the hospital. Don't know why nuffin come up on the mri. In February it's bin 12 month

Will bin out of work know for 1 mouth my system have calmed down but still they.
Difficulty walking difficulty in swallowing tingling in the shoulder blade vertigo legs going heavy spasms deep Sensation pains in the legs and arms sudden urges to go to the toilet one side of your face going numb and I car hav a hot bath or shower. Sum days I fill on top of the world. Or most of the days I fill down where everything kicking off

Hi everyone :) 

I'm 25 and newly diagnosed with relapsing remitting Ms. I've accepted that I've got it, I'm just getting on with life now like normal. At the minute I'm free of any symptoms, it's just always in the back of my mind thinking what will it be next, and how long will it be between relapses. My first symptom was a numb left hand side of my face around April of this year... that was more annoying than anything. After about 8 weeks my feeling was back to normal. I then had Optic neuritis in October which made my vision really  blurry, I put up with it for about 3 weeks, but my eyes sight was getting gradually worse to the point where I wasn't driving. I finally got some steroids from the neurologist, they took another 3 weeks for for vision to get back to normal... relieved is an understatement. 

Right now I'm back to work as normal, and just waiting to go back and see another neurologist. As I'm sure you all know it's just really frustrating. Even though I've accepted it, I'm still in a bit of a state of dis-believe. I'm just hoping I get a 20 year period of remission, I know that's wishful thinking though. 

 

Hi, I am new to this website as I am currently under-going investigation and waiting for an MRI scan to see if I have MS. I am 23 years old and my symptoms started with my legs, I was out with my boyfriend and suddenly was unable to lift my left leg as it felt too heavy, I was also experiencing lower stomachache which is an odd symptom that is not known have anything to do with MS. As the days progressed I started to get chronic pain down both of my legs along with a tingling sensation! It then started in my arms and also on one side of my face and the back of my head... at this point I was extremely worried and began to see my GP. However nothing about MS was even mentioned untill over a month of having these symptoms! I am now finding the fatigue the hardest thing to cope with as it is interfering with work, I’m also finding my train of thought is quickly broken as I could be in the middle of a sentence and forget what I was saying! The tingling sensation has also moved into my hands and feet which I was not  experiencing at the very beginning, and as embarrassing as it is I’m also having the tingling/pins and needles sensation down there which is also not the best!

Like I said though, I have yet to be diagnosed but if anyone has been diagnosed with MS and is having my symptoms please let me know! 

Thank you!☺️

Anonymous

Hi I am in the process of being assessed for MS and was reading the reports of first symptoms and time to Diagnosis. I have seen two different Neurologists (accidental double referral, waited 8 months and 1 year) One Neurologist suggested it may be either MS or Transverse Myelitis of the Cervical spine. Will be having a repeat MRI with contrast in Feb 2018. Have had a lot of bloods taken. The other Neurologist just looked at my MRI + contrast and though I had quite a few white patches, I didn't have any in the 'frontal region' on that basis alone categorically said I do not have MS. Didn't offer any other suggestion.

I will list my symptoms as they happened

Swallowing - noticed in early 2016 couldn't swallow Tinned Tuna in Spring water. Never happened before. Still cant swallow it no matter how much I chew. Now choke on Macadamia Nuts and  having difficulty with some veg skins eg tomatoes Urgency- early 2016 noticed an increasing intensifying sensation of needing to wee immediately, but when I went to start the stream it takes ages to begin. I put it down to age being 60. Leakage - embarrassed to say it but on and off a bit of fluid bowel action leaked I had no control over it Spasms - mid 2016 and for about 3 months Every time I lay down I could feel my calf muscles and occasionally upper leg muscles 'shorten' weirdest sensation, then knot then excruciating pain. Nothing I did prevented, relaxed, stopped the spasms which lasted 3 to 10 minutes at a time and went away only to return a few minutes to a half hour later. I have had a double fracture of the coccyx and the pain from that doesn't compare to these spasms. Almost completely gone now. Tingling - October through to early December 2016 patchy tingling and altered heavy sensation in hand, outer elbow area and back of upper arm on and off left arm only Loss of Muscle control left arm only, couldn't control movement of left hand when turning hand over, couldn't grip, on and off for over 2 weeks Fatigue - over a few months on and off. I would get up feed cats make a cuppa, barely able to drink it had to lay down again and spent rest of day flat Vision - blurred, near sight way poor, long sight actually improved, I couldn't wear my prescription glasses as it made my vision poorer. Eyes ached has all settled now Vertigo - one morning woke and tried to get u out of bed and whole room spun and kept spinning. Worse when I closed my eyes. Lasted about 4 days gradually less. Balance - tripped over, overbalance, seemed to be loosing my footing more than due to being tired or age. Has improved When I am stressed (Mum passed recently) heaviness and weakness returns to left arm / hand. Only thing that is persisting is difficulty in swallowing some foods, Urgency and intermittent bowel leakage. I have done quite a bit of reading, (I wouldnt be alone on that), and have read that MS diagnosis over 50 is a lot more difficult to diagnose and can take much longer than at a much earlier age Has anyone with MS over age of 50 had that experience? What helped or excluded the diagnosis and any other insights would be greatly appreciated. Regards to all.

Anonymous

Hi there just wondered if in addition to all those with tingling and numbness also had the eye and sight symptoms, and also if the numbness and tingling is just in the night or day as well?

I have lots of symptoms that sound like MS like the numbness etc that sound heaps like MS but haven't yet experienced any vision symptoms.

So just wondering do I need to worry if I don't have the sight symptoms?

I'm going to get checked out by the doctor asap anyway.

cheers for any advice

Sorry if bringing bad news but I was diagnosed with RRMS and never had sight problems. Had trailing left leg and pain in lower back, probably due to walking off gait, and pins and neddles from knee down most pronunced during day especially when tired.

Please be assured MS diagnosis is not a life sentence anymore with more and more treatments really showing benefits.

Regards

I was told I had MS when I was 35 years old, I was at work and could not go to the toilet........so at lunch went and had 2 pints and still no go. When I got home from work I went to Doctor and he sent me straight to Hospital where they put cafator and trained me of........what a relief, I had a Lumber Puncher and found nothing.........was sent home and with in a few days felt very weak and rang my mate and went back to hospital and next morning I was Paralysed from waist down. The next day a Neurologist came to see me and I waited for a few weeks and was sent for a MRI scan witch revealed I had information of the nerves symptom witch is MS. Well after 6 weeks I was learning to walk again and as soon as I just wanted go back to my flat. I lived alone at the time, I was able to walk to the kitchen and friends came and done shopping. I guess what I am trying to say is I am 60 now and I am fine.

There is nothing productive describing initial MS symptoms leading to diagnosis and subsequent treatments.  I was in the middle of the Bell Curve  avoiding the extreme edges of too much and too  little just like anyone else out there in MS land.

Lately, however, MS has taken a cruel turn of events: I am sick, or feel sick without adequate causation other than the oft-abused  MS default setting that all physicians  resort to when all applied medical knowledge fails to explain why the universe exists.

Yesterday I was at ER with complaints of feeling ill, breathing exertion, chest discomfort.  I am wheeled in immediately.  (Actually, I motor in powered by my battery equipped power chair.)   A bevy of four nurses and three techs pummel me with needles, IV sets,  monitoring wires, O2 sensor, catheter, but no saving my life chaplain.  The sudden attention was nice but then I'm thinking they do this because of a potential heart condition so they (and me) are ready for any serious stuff happening.  I told the admitting clerk this is not a heart problem but that clearly fell on deaf ears.  Now  I'm wired.

EKG tech gets results, unhesitatingly runs away before I have a chance to look at it; specifically, the P wave.  I'm then wheeled across the hall for quick CT scan.  While there spasms begin in earnest and when I am returned to Bay 8 I'm in desperate need of benzo which doc agrees, I get, I sleep.  Doc comes in later with news for "lights on, no one home" mildly  drugged patient with good news, the warm and fuzzy mommy version: nothing wrong.  The bad news: nothing wrong.  I'm sick but he says I'm OK.  Nothing wrong.  I disagree but hospital takes doc's side for reimbursement of non-sick patient. 

MS an be a cruel prankster.  If you are sick you may not be.  Take two aspirin and all me in the morning.  I hate MS.

This is my first ever post on a community forum. Part of me has wanted to run away from it all, but I'm starting to realise that it's important to share. I hope this helps someone out there.

I've had quite a quick and efficient diagnosis pathway. Not sure if this is due to the NHS in my area being good or it's because of the steps I took prior to the first GP/neuro visit. Well here goes:

My first symptoms started as what I now know to be Lhermitte's sign. Thankfully it's never been painful just a numbness which can at times become quite intense. It first occurred after I'd spent the day driving down to Southampton from Stockport and back again (this was in a last ditch attempt to save my 10 year relationship ending but that's a whole other story!). I figured all that time in the car had caused a nerve to become trapped so after some googling I went for some physio sessions. Unfortunately the numb sensation from the Lhermitte's just increased to constant numbness in my hands and intermittent numbness in my legs and feet. The physio seemed stumped by it (although looking back I think he may have had an idea but didn't want to alarm me) and suggested I go see my GP.

GP listened to my experience thus far and referred me to a neurologist as she said she couldn't order the MRI scan I needed. Whilst waiting for the neuro appointment I developed pain behind my left eye over about 3 weeks so I booked in with an optician. A couple of days before this appointment my colour vision started to go and I started to be a little more concerned so the googling recommenced. That was when I first came across MS. It all seemed to fall into place in my mind then. The optician was very caring and also thought things may be linked. He wrote me a letter to take to the neurologist which explained the weakness he had seen in my pupil dilation. At this point I had a week to wait until my first neuro appointment and my colour vision came back.

Anyway, two MRI scans, blood tests, VEP test, lumbar puncture (never again!), and opthalmology tests later and I've been given a diagnosis of relapse-remitting MS. Next appointment with my neurologist is in a couple of weeks and will be looking to start DMDs. Also very impressed that I have been assigned an MS nurse and have an appointment with her in a few more weeks.

This has all happened over the course of six months. My numbness is constant and a few weeks ago it was really bad in my legs and feet but it has eased. I've been able to continue with my regular activities and am keen to start meds as soon as possible.

Hi feelingcomfortablnumb from some one whose is notfeelingcomfortablnumb.

 

Have you started your meds and if so have they caused any side effects. Im visiting my ms nurse for first time next week with a numb leg with an iceberg foot.

hope your feeling better

 

Well in about 3 wks times it's bin 12 month's and still got NO where. Know what do i do

My very first inkling something was wrong were the leg jerking at night waking me up from a sound sleep. Soon thereafter my jogging route - a mere hop of two miles - seemed endlessly long and quite laborious really questioning my physical ability when previous hikes of longer time and miles were too easy and effortless. After all, 32 is getting old, right? Then came three bouts of ON left eye only, one episode of blindness lasting 11 months. Ironically, my examining ophthalmologist said I did not have an eye problem on more than one occasion never offering to reveal his view of the world. Hmmm.
I eventually endured the trifecta of exams most patients submit to when things are beyond simple curiosity and you must have answers to your dilemma. (Is sticky wicket what you say across the pond?)
Living in a power chair is a good stable life. My home is mostly accessible. Parking up close is not a problem for me and my van except for those inconsiderate bums who can walk unaided and park a sedan in a van/wheelchair only spot. Spasms are a huge challenge so I have an Intrathecal Baclofen pump that gets amped upwards every 92 days. This "adjustment" process has been 3 1/2 years with no end in sight. Pump works most of the time with benzodiazepine picking up the slack which thankfully is not that often.
Last week I was at ER where I learned Autonomic Dysreflexia is "what?", and MS is worse than MRSA. I woke up that morning feeling like a monster boa constrictor was at work causing shortness of breath. With great compassion my wife advises the ER clerk I have shortness of breath. (That is hospital code for potential cardiac arrest.) I am ushered in straight away surrounded by a bevy of nurses and techs embarrassed by all the serious attention until I realize they think I am a heart patient and soon to be a dead one.
This entire episode was the infamous MS Hug. It was terrifying. Then came the spasms when being removed from CT. Tech rushes me to Bay 8 but the hallway is blocked while EMS tries to package a incoherent homeless person so here I am in the hallway with a bad case of the jerky jerks. Eventually arriving in my "room" my wife goes apoplectic calling for help and my stash of benzodiazepine. The next thing I know someone fingering a pill down my throat followed by a water chaser, then it was lights out.
Doc comes in says nothing wrong with me; go home. I go home. Three days later the benzo hangover is gone allowing me to clearly process recent information. Doc didn't say it but the mysterious MS Hug was the culprit playing games with me. Unfortunately, the boa slithered away before I could kill it. It might come back. That encounter will not be a pleasant experience for either one of us.
-sevensix

How long roughly should one have to wait for a MRI scan.

Hi 

I am Ozeroo and posted the comment below listing ( I didnt mean to put it as Anonymous me bad)of  my symptoms. Seems not only can MS play pranks on one, but Late Onset MS (over the age of 50 and I am 61) LOMS also plays pranks on Neurologists. I have one Neurologist saying I have MS because of clinical history and Transverse Myelitis in Cervical spine on MRI plus scasttered lesions in brain MRI as opposed to the other Neurologist who says because I don't have any 'frontal lobe' lesions I dont have MS at all!

I have been asked to have a Lumbar Puncture to see if there are any oligo bands, which if present would confirm MS. BUT and heres the rub, not having any banding doesnt mean I dont have it as there have been many cases of MS that dont have these bands.

Anyone out there who has had a Lumbar Puncture can you let me know how was your back down the track? Any persisting pain or issues?

I have gotten to the age of 61 have done heavy lifting as a Nurse but have always been very careful with my back so dont wish to stuff it up now for questionable value of results. Any input greatly appreciated

 

 

Hi I am in the process of being assessed for MS and was reading the reports of first symptoms and time to Diagnosis. I have seen two different Neurologists (accidental double referral, waited 8 months and 1 year) One Neurologist suggested it may be either MS or Transverse Myelitis of the Cervical spine. Will be having a repeat MRI with contrast in Feb 2018. Have had a lot of bloods taken. The other Neurologist just looked at my MRI + contrast and though I had quite a few white patches, I didn't have any in the 'frontal region' on that basis alone categorically said I do not have MS. Didn't offer any other suggestion.

I will list my symptoms as they happened

Swallowing - noticed in early 2016 couldn't swallow Tinned Tuna in Spring water. Never happened before. Still cant swallow it no matter how much I chew. Now choke on Macadamia Nuts and  having difficulty with some veg skins eg tomatoes Urgency- early 2016 noticed an increasing intensifying sensation of needing to wee immediately, but when I went to start the stream it takes ages to begin. I put it down to age being 60. Leakage - embarrassed to say it but on and off a bit of fluid bowel action leaked I had no control over it Spasms - mid 2016 and for about 3 months Every time I lay down I could feel my calf muscles and occasionally upper leg muscles 'shorten' weirdest sensation, then knot then excruciating pain. Nothing I did prevented, relaxed, stopped the spasms which lasted 3 to 10 minutes at a time and went away only to return a few minutes to a half hour later. I have had a double fracture of the coccyx and the pain from that doesn't compare to these spasms. Almost completely gone now. Tingling - October through to early December 2016 patchy tingling and altered heavy sensation in hand, outer elbow area and back of upper arm on and off left arm only Loss of Muscle control left arm only, couldn't control movement of left hand when turning hand over, couldn't grip, on and off for over 2 weeks Fatigue - over a few months on and off. I would get up feed cats make a cuppa, barely able to drink it had to lay down again and spent rest of day flat Vision - blurred, near sight way poor, long sight actually improved, I couldn't wear my prescription glasses as it made my vision poorer. Eyes ached has all settled now Vertigo - one morning woke and tried to get u out of bed and whole room spun and kept spinning. Worse when I closed my eyes. Lasted about 4 days gradually less. Balance - tripped over, overbalance, seemed to be loosing my footing more than due to being tired or age. Has improved When I am stressed (Mum passed recently) heaviness and weakness returns to left arm / hand. Only thing that is persisting is difficulty in swallowing some foods, Urgency and intermittent bowel leakage. I have done quite a bit of reading, (I wouldnt be alone on that), and have read that MS diagnosis over 50 is a lot more difficult to diagnose and can take much longer than at a much earlier age Has anyone with MS over age of 50 had that experience? What helped or excluded the diagnosis and any other insights would be greatly appreciated. Regards to all.

Hello Ozeroo, I believe from my research that everyone reacts differently to the lumbar puncture. I found walking difficult in the first half day afterwards and then had 10 days of persistent and excruciating headaches whenever I attempted to undertake anything more strenuous than lying on the sofa. The procedure itself was painless and I haven't had any issues with my back since. I wouldn't have one again because of how awful I felt for the 10 days post procedure. FCN

Hi FCN

thanks for taking the time to let me know how you fared with the Lumbar Puncture. Doesnt sound like much fun to me, 10 days of excruciating headaches has me worried let alone finding walking difficult.

I have also read that the presence of oligoclonal bands isn't always clear and that it may be negative in around 23% of samples especially in Late Onset MS (LOMS) 

Think I might hold off on the LP for now. Thankyou again 

Regards

Ozeroo

Anonymous

Hi there, I experienced my first symptoms a very long time ago, at least 20 years ago now. They started with extreme fatigue, numbness and tingling , and it felt like an electric shock through my hands because pain was also part of it. I went to the doctor then and he said I was just depressed and prescribed antidepressants. I felt better after a while.Then maybe months later I developed more symptoms of the cognitive type. I became forgetful , I had trouble finding the right words for what I wanted to say they were at the tip of my tongue but I just could not remember. These went on for maybe a few months also. Then one day I got more of the electric shock feelings in my hands but now there was muscle spasms and it was in my feet and legs. Then I had a tightness around my chest which the doctor told me was rib cage arthritis.While all this was going on the doctor just kept saying it was depression but I did not feel depressed . I just kept going to the drug store to find something strong enough to control my pain but there was nothing that helped. I was given only mild drugs from my gp. Then as the years went on I had enough pain in my shoulder to going to the out patients clinic one day and they gave me some tylenol 3  with codeine which helped more with all of the pain that I had . I still had pain in my legs at the time but now they became stiff and my hips began to hurt also. After sitting too long I had trouble standing up and I mean lots of trouble to stand. But also when I would do a lot of physical activity. One morning , about a month ago I woke up with extreme vertigo, the room was spinning around so fast and I became ill. It lasted the whole morning and I went to bed to try to relieve it but I woke up the next morning exactly the same way. I went to the hospital by ambulance and they did a series of tests. They did a CT scan and an MRI which revealed lesions. My gp says it could be nothing. I believe that it may be MS.  I still have more tests to go through with a neuroligist and am now awaiting my appointment. I am very frustrated with my gp because he seems to want to blame this all on depression. It just does not make sense to me. Did anyone else experience something like that?

Think you need to change doctor fast and get an appointment from a good neurologist. All the symptons you have strongly point to MS but you need a firm diagnosis from a better motivated physicians.

I went to the GP after experiencing a numb patch on one side of my middle in 2014. He referred me to the Neuro and then I had a MRI which showed lesions on the brain and transverse myelitis. Neuro told me it was highly likely that I would develop MS, but difficult to diagnose definitively. I was strangely relieved that it wasn't a brain tumour. I then had a lumbar puncture, optical test and a further MRI within 6 months which indicated MS. Neuro told me that until I had any further symptoms he couldn't say 100% it was MS, but felt it was highly likely. I went into denial initially, then got very depressed at the uncertainty of it all. I couldn't contemplate reading up on the condition or contacting the MS society, as I wasn't ready to accept the diagnosis. However, over the next couple of years I did subconsciously make some lifestyle changes, primarily leaving my extremely stressful job in homelessness, and eventually found a less stressful job. Almost 3 years later I,ve had further symptoms when i found my right hand wouldn't open and close very well, and reduced grip, so went back to the Neuro who (after another MRI) confirmed the diagnosis of relapsing remitting MS. And now I'm waiting for an appointment with the MS consultant. Over the past 3 years I've gone through a range of emotions including bewilderment, anger (why me), frustration, and the biggest one, FEAR. But I am coming to terms with the shitty hand I've been dealt, and i urge people to talk about how they're feeling, and try not to stress about the future and the unknown, as it really doesn't help. It appears to be a different experience/journey for everyone, so be patient with yourself and take each day as it comes. X

I would like to endorse something 'madpants' said above. My husband, without any previous symptoms, lost the use of his bladder and bowels overnight. Over the following weeks he lost the use of his legs. He wasn't well looked after at our local hospital and after a month I got him moved to a hospital with a better neurological unit. There followed a very difficult couple of years of remissions, bladder problems, other physical problems, depression and financial worries.
My husband was 31, did a manual job, rugby training at least twice a week and played rugby on Saturday (sometimes 2 games if he could get them).
If i knew then what we know now things would have been easier.
After 2 years of him wallowing in self pity, staying in bed and not doing anything I felt things had to change. Luckily for me I knew he liked gyms. I did a deal with him.
When I got up for work and got our children ready for nursery/school so should he get up. Shower, come downstairs and breakfast. If after an hour he really really felt ill then he could return to bed. I joined him up to a local gym and i suggested that he should work out there 5 times a week. His new job would be to work on his body, build up his muscles, constantly remind those neural pathways of the routes they should be taking.
In our case it worked.
There was huge sadness at the sudden loss of playing sport but at some point that was going to happen. Now he can go to his rugby club and help coach the youngsters. He is still completely independent. 30 years on it is arthritis that is the enemy not MS. He still works out daily and in a crowd he passes for a middle aged man, but he quietly has very finely toned physique. He walks with sticks now but arthritis is the cause. I am currently ill and he is looking after me.
The exercises he does are swimming, reps using weights and his favourite Pilates. He is generally a very contented man, lots of friends, and very happy with his life.
This approach wouldn't work for everyone but I'm putting it forward as an option to the more 'sporty' of those affected and as an example of what you can, perhaps, achieve if you try. That it is possible to have a fulfilling life, all be it a different one, after diagnosis.

It was the summer of 1985, I was aged 22, and I was painting a helicopter hangar at RAF Woodbridge (don't let the words RAF confuse you, it was an American airbase!) Anyway, I suddenly noticed that I couldn't see the runway lights and I'd lost central vision in my left eye. I went to the Quack and he said "it's just a swollen optic-nerve, it'll be fine in a few weeks". After being diagnosed with MS in Spring 1991, many subtle symptoms later, it was like putting a jigsaw puzzle together and all the pieces from the previous 6 years all fitted and made sense. MS, what a journey.

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