Your first symptoms - looking back..

New diagnosis and before diagnosis
81

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.

82

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

83

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

1 Like
84

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.

85

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.

1 Like
86

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.

87

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

88

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

89

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

90

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.

91

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

92

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?

93

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.

94

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

95

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

1 Like
96

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.

97

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

98

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.

99

I had been extremely healthy until June 20, 2016, when I was bitten by a deer tick. Had a huge bulls eye rash that took up my entire foot, then flu like symptoms worse than I have ever experienced in my life with fever of 105. In the ER several times. Lyme tests were negative so they stopped Lyme treatment. I never got better after that. I know I have Lyme, even with 4 negative tests because I got sick after the tick bite and never got better since. All of my symptoms follow chronic Lyme. For the last 5 months I’ve had neurological symptoms: brain fog, dyslexic typing, pain, burning and numbness in both feet and hands, loss of coordination. The worst symptom is the crushing, overwhelming fatigue. This has been present since the start. I haven’t worked since Feb. 2017. I have at least 35 different symptoms. No doctor will confirm Lyme with negative test (even though the tests are only 48% accurate). In fact no diagnosis except Chronic Fatigue Syndrome and Fibromyalgia is given. Scream!

1 Like
100

I’ve just had a recent diagnosis of MS, it was last Wednesday. I was diagnosed with menieres disease 6 years ago by a GP with a special interest in ENT. He gave me 6 pills a day to take and off I went. Nothing improved, still had drop attacks, vertigo, ear pressure, couldn’t walk for longer than about 6 mins without being completely disoriented. I changed to part time work and I was working 4 hours per day and coming home to bed and staying there because of the fatigue and come Friday, the weekend wasn’t there to be enjoyed, I could only stay in bed trying to conserve energy ready for work Monday. I was told I had post viral fatigue after numerous UTIs, kidney problems, I have been off work for 10 weeks!!! The numbness and tingling in my shoulder arm and fingers and left leg and face was muscular pain, possibly frozen shoulder. The slurred speech, brain fog and getting my words all mixed up was from the chronic fatigue. At no time ever, was MS mentioned Finally, last year, I saw someone in ENT who said I had oscillopsia and they said menieres was secondary to oscillopsia Oh god I’m waffling on Basically, I’m claustrophobic and have anxiety and a few years ago, I tried to have an MRI 5 times with varying doses of diazepam and couldn’t So when I had one this time, 2 in fact, I just did it and they referred me to neurology. Still no mention of even possible MS. It was only when I joined an oscillopsia support group that I did an intro post and I mentioned my MRI letter said “supratentorial white matter signalling changes which raises the suspicion of neural inflammation” and a lady commented “white matter, isn’t that MS?” So I googled symptoms of MS and I tick every box So frantically phoned neurology at the hospital and they’d not even received my referral from ENT and said to phone back in two weeks!!! Already from Saturday to Monday, I couldn’t eat, I couldn’t stop crying so there was no way I personally could wait two weeks to even hear if there was a referral received for me, so I went to a private hospital Wednesday evening and he did tests, looked at my medical history and MRI and confirmed RRMS. It was the fear of the unknown for me. I’m on steroids to reduce the brain inflammation and then he said I’ll be on disease modifying medication. I feel relieved to know I now have a proper diagnosis and that this is what they call a relapse that I’m having now. I’ve still got so much to learn as until Saturday last week, I’d heard of it but didn’t know anything but I’m surprised MS was never mentioned to me when the check list of symptoms, which could have been written by myself and that I told numerous GPS, it was never once mentioned. I feel better now emotionally because now I know there’s support out there. Sorry for long post and I’ve actually forgotten what made me write this. Sorry if there’s TMI and I can’t tell you how grateful I am to have discovered this site. Thank you Tracie