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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!

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

Hi TJx5

Don't be concerned about the fear of ranting on here on this forum as that is in part what it is all about; the telling of your story.

I was diagnosed with RRMS about 2 years back and have had indifferent experiences of how my condition was and is now been managed through the NHS in the UK.

There seems to be increased numbers now being diagnosed with MS in the UK. Mine started after a bad bout of back pain which unlike on other occasions I could never get rid of and I developed a resultant trailing of my left foot which seemed to spark medics into considering I had MS. In the past they would have probably just diagnosed this as being a gamie leg and prescribed at most pain relief.

Had a battery of tests, several MRIs and consultations with Neuro consultants before I got an affirmative diagnosis of RRMS. Now on a DMD, a medication called Gabapentin for neuropain and high doses of Vitamin D. My Neuro consultant maintains I maybe showing some reversal of the condition in recent MRIs; I think debateable as some days I trail my foot more noticeably than at outset and now get more and more queries from observers as to what is problem with my foot. When I reply MS they look in astound as they expect me to be wheelchair bound.
However I try to be as positive as possible and live life as full as I can.

Problems with treatments of MS in UK seem to arise as a result of the lack of specific medical specialists to advise on and treat the condition. Neuro consultants deal with all types of pain-causing conditions and one candidly admitted to me that, since I am a scientist and well read, I may know as much about MS as them.

Finally DMDs are expensive medications and consultants will not prescribe them until you have 2 or more clear relapses of the condition. Unfortunately by then most MS patients are frustrated and are most probably suffering from many other detrimental side effects or conditions.

On a more positive note chin up; many are suffering more life-limiting conditions than MS.
Regards

My first episode was in 2009. I had electric shocks in my left toes. Excruciating. It's against the Geneva Convention to do this to someone else -constitutes torture. I had buzzing in a thigh and my right foot went cold and semi numb. I had the electric shocks in my face for half a day. I could see my skin being pulled around as it happened. Dr did full bloods and a Neurologist said he would find out what was wrong with me and Mri of head was done.  Six weeks later his acolyte, half my age, told me there was nothing wrong with me and to see my GP about my symptoms.  

Since then the foot is now my whole leg, when it happens. The electrocutions now happen to my wrists and left armpit into my breast once. 

Last month I had a four day spasm of my lattisimus dorsi. Felt like a broken rib when I breathed. I've had them so I know. Very painful and restricting. Then the muscle between my shoulder blades went into spasm. I couldn't lift my arms above shoulder height, it was so ruddy painful. Lasted a day. 

 

I get random niggles, like a little beetle running around in a tiny circle on my skin. I get bits of me being tugged by spasming nerves. Twitches of my fingers and toes.

One symptom I had at the beginning was that when I was dozing it would feel as if I was buzzing. But it could be the bed. I had a hunt round on the net and found someone else this had happened to over the pond. She was lying on a beach at the time. Twelve years later she was dx with MS. She said it was an early symptom, didn't get it since. Me too. 

Two months ago my right shin disappeared. My body could not feel it or use it. It only lasted a few minutes and I'm very thankful because I needed a stick to walk with, I was at work in the supermarket where I work in the freezer department, it's a dynamic job that involves a lot of lifting.  

 

My symptoms are slowly getting to a point where they could affect my ability to work.  Perhaps the NHS will take me a bit more seriously now.  Can't afford private.  Two tier Health service?  You bet.

 

Reading back further, I've had two accidental leakages of wee recently, and also sometimes I can't find the right word for something so use a different one A LOT. The spawn have noticed. 

I wonder ...

 

 

Hello.  I a very new to this site.  I am not even sure what I want to know as I am still reeling from a very recent diagnosis.  I am 57, female.  I truly thought at this point in life I was out of the woods for MS.  My sister, who passed in 2011 (horrible house fire; her MS would not allow her to get out) had one of THE most aggressive forms I have ever seen.  As you can imagine, this has always been my worst nightmare. Within 6 weeks I can no longer drive or work or walk unaided.  I am beyond depressed (I was diagnosed clinically depressed years ago) .  My husband has brain trauma and can no longer work.  Now he has to take care of me.   I don't know what I' m asking in this post. 

I have MS

Hello,

It doesn't matter that you don't know what you want. It is enough that you have come onto the Forum and told us that you have just been diagnosis with MS. That makes you one of us.

Now you have found your new family let us know how you feel and you'll find that there are people here who will know what you are going through, understand how you feel and are willing to listen. You aren't on you own now.

Anthony

Dear Anthony...thank you so much for responding to my post. (my first)!  It does help knowing others are out there as confused as I. I so appreciate you taking the time out of your day. :)

I really feel for you, a diagnosis of MS is such a rollercoaster. And you've already been through a tough time with the loss of your sister and your husband's difficulties. The only advice I can offer is to give yourself time to adjust, and seek out support, as there's a lot out there. You might find talking to a counsellor helps, and your GP could refer you. You're not alone, there's a lovely supportive community here, and we all know how isolated you can feel,  and the fears/tears and frustrations can be overwhelming at times.

Sending big comforting hugs x

 

Dear Madpants.....thank you so very much for the comforting words. You are so right about giving myself time; I am currently trying very hard to do this.  One day at a time.  A very popular, common phrase yet so applicable.

New to site. Forgive me if this is long but I need help. 

I am 33 years old. started having mild chronic pain about 8 years ago. That progressively got worse over time. They diagnosed me with Fibromyalgia after I had all the pain points. I had anxiety and depression issues as well and started developing weakness in my hands.
I after about 4 years of this and no end in sight got sent to an MS specialist. They did an EKG, EEG, and nerve conduction test. Preliminary results showed damaged nerve  caused by compression at the LF and S1 but not serious enough for surgery. But that did not explain the weakness in my hands. 

They scheduled an MRI shortly after that came back clean no Lesions. Did not rule out MS though said a repeat should be done in a year or two. Fast forward a year another MRI and another clean MRI, this time they also do a Cervical Spine MRI no lesions, determined what we already knew about the disc compression and gave me no new answers. 

Fast forward 3 years later and I have started getting MUCH worse. I had a fainting episode that mimicked a stroke one night when watching TV. Flush across face, vision distortion and dizziness. Since then its only gotten worse. I developed a cold wet left foot with pain. Of course its not actually wet, just feels as such. Its weak and also get bad cramps in it. Blood work has always been fine, minus a couple times when D or B12 was low. Supplements fixed that. BP is fine. Thought it could be a DT, so they did an ultrasound of leg, blood flow is fine. 

The weakness in my legs has now spread to both legs, and feet. its constant, and my feet feel always cold and wet. My hands have started to get weaker, and feel like they have a rubber glove on it all the time. I have patches of tingling sensations on my face, numb lip, ear feeling cold and chest tightness in my upper back and chest. 

Went back to Nuero recently where they diagnosed me with Functional Neurological Disorder or a fancy way of saying its all in your head but actually casues symptoms. I have also noticed that I am fumbling my words a lot more, talking, typing, or writing I say the wrong thing, mis spell things or otherwise say the wrong things. This is very odd as I am highly intelligent, and used to be a writer. 

I have an MRI scheduled for this Friday and is it sad I hope they finally find out I have MS? This has been 8 years of hell and every doctor under the sun says I am crazy. My family has disowned me for not working and taking government assistance while I seek disability for not being able to work. Ultra conservatives... I am in the US in the Washington State area and am tired.. sick and tired of being sick and tired.

My question to you all.. did it take you THIS long.. and THIS much frustration to get diagnosed?  I have not had an LP yet.. I am demanding one this time around. Does it sound to you that I have MS? I am tired of always being in pain, and having this weakness and cold, and rubber glove feelings. Plus the dizzy spells and fainting like feeling which are really just intense dizzy spells. 

Hi there, 

I am new to the site also. 

I am waiting on an appointment for a neck and brain scan in connection with symptoms.

For the last 10 years I've had various problems, never linked them and always explained them away.

Leaking urine = having children

bad back = having children

Fatigue = having children

Foggy thinking = tired from having children 

blurry vision = tired from having children- optician said my reacted at different times during an eye test couple o f years ago

Lol  - I do love my children btw

Over Christmas things took a turn for the worst, my back pain was horrendous - couldn't lift my leg to put socks on (although it wasn't just with the pain) it was like my leg was stuck and couldn't move up any further, every time I stood up or at down I had a tremor  in my spine.

This last around 10 days but since I've been plagued with fatigue, tingling achy arms (mainly upper arm) but can radiate down to hands. Some mornings this can be in my legs, or random pins and needles in my feet. Prickly tingle in my lower back (part of it feels numb - i can feel the pressure when i press on it) 

I also keep getting a strange hot feeling on the top of my head as if my head is under a hot lightbulb - but not hot to touch.

Feeling of moving - especially if stationary in the car (feel like i'm rolling backwards) Also, pain at the nape of my neck where it meets my head- like a headache just in that part

Bloods revealed nothing but low vit D  which I'm now taking a supplement for and percentage monocytes was out of range (the moncyte count was normal just the percentage moncytes was high - whatever that means).

Doc tried me on amitriptyline which just made my fatigue even worse. I've never been a great sleeper and because I have constant trips to the bathroom i ended up feeling zombified. 

I've had various physio therapy sessions for my back over the years - an MRI scan around 6 years ago revealed a micro fracture and several bulging discs. Physio never seemed to resolve anything. Had physio down below for my incontinence - it was so invasive and didn't resolve anything either.

Just curious to know if anyone has had similar symptoms and been diagnosed - do they even sound like MS symptoms at all?

 

Thanks in advance :-)

Hi all bin long time seen my last post but dose anyone on ere get really bad (headaches) it's like sum one put in a knife in ya head and it goes init my face but I don't get any pain in my eyes.
Had it's for 3 weeks now non stop

hi 

I went for mri last week my symptoms over the past 6 months have changed ,blurred vision ,cramps for weeks then finally foot drop and bladder is out of control and vitamin d level is down I take fultium 800 daily the foot drop is the annoying bit .

 

I have been having things go on that just didn't feel right so I looked them up and MS popped up. And see my grandma, her sister and a few of my women cousins have had it. The symptoms include headaches, nausea, sometimes vomiting, confusion, blurred vision, mood swings like being depressed and crying all the time, fatigue and having to go to sleep when it gets bad. I also have back pain,and numbness and tingling, and sometimes it's hard for me to walk. I'm scared and no one believes me.

hello havnt been diagnosed with me but I'm having wierd symptoms the past 4 months started with me getting flu like symptoms when I was getting better I got a twitch on my left tricep stayed for a week went away then after whole body started twitching..a week after that I was at the movies sitting for 2 hours when I got up my leg went numb fell asleep I shook it off but foot stayed with numbness and stayed in the ankle area shortly after that I had a numb feeling in shoulder that went from numb to an ache and then a burning sensation that stays for most of the day everyday then the hot sensation went into my right thigh comes and goes on the thigh so right side issues at this point but that numb feeling to ache and burning sensation is now on my left shoulder that one comes and goes..mybfeet will go from cold to hot mainly on my right side ...also I have been waking up with numb hands mainly the pinky and ring finger nothing on left leg yet ..and also my right bicep feels tight..my motor function is still there but does this sound like als I'm very concerned

Hi everyone,
I was diagnosed with MS last Thursday by my GP following recommendations from the Dr who wrote my MRI report. I had the MRI because I've been experiencing visual problems for the last 3 weeks. I wasn't able to see detail or people's faces and black lines or outlines would appear to be flashing a bit like a camera flash. My vision was also quite dull. This was accompanied by eye pain and numbness in my face. The MRI Dr reported that I have an active lesion by my visual cortex and 3 or 4 other non active lesions. I was prescribed a 10 day course of steroids which have improved my symptoms even though they haven't completely gone yet.

So, we have been in shock for the past week and were looking forward to seeing the MS neurologist last night for more information. We met with him yesterday and he explained that despite these lesions, he was not able to give me a definitive diagnosis as the MRI was inconclusive because he doesn't know the history of my old lesions. I did tell him of previous weird episodes, i.e. numbness in my finger for 2 weeks 2 months ago, shingles in leg with no rash - severe nerve pain. My GP had told me they were 99.9% sure. I am now to have another MRI in 3 months.

So, we are obviously pleased but also confused. I just wondered if anyone else has had an experience like this? Is it normal for a neurologist to be so cautious when others were so sure? He says he can't say I have got it but also that I haven't. Feeling a bit strange about the whole episode to be honest.

Any advice would be appreciated.

Thank you
Jo

Hi im new to the group and looking for some advice. Ive been told for 4yrs ive got cfs,and despite returning to my gp with futher symptoms we have continued with just treating my symptoms as and when they occur.  Due to a vertabra  collapse and a visit to A &E someone as finally said your Gp needs to refer you to a neurologist.  I started with chronic fatigue 1,muscle  spasams muscle  loss, incontinence of both urine and feaces. My eyesight has become worse with double vision and black spots. Vertigo loke symptoms  and need to concentrate on walking or any other task,my lastsymptom ile mention is unable to sY what i want to say. How do i get my gp to acknowledge  this and do a referal. 

4 the last 2 weeks I been getting a old symptom. But symptom is getting worser they am my (tremors) and muscle spasms in the back they talk me of my feet. Anyone 1 get this as will??

Hi any help would be greatly appreciated I have had various symptoms ref MS my doctor has referred me twice to a neurologist I have tremors and cramps, fuzzy thinking, extreme fatigue, dizzy spells and involuntary eye movements to name but a few but each time the specialist has said all I have is a essential tremor as my Mother has this. They have never examined me neither I am 46 I had Claudia equine syndrome in 2013 which caused nerve damage and at the time a Specialist said had I been diagnosed with MS I am at the end of my tether and don't know what to do next Doe's anyone have any suggestions many thanks Dazza

Has anyone had a problem opening their eyes in the morning not due to stickiness. Happened first in my right eye then a few days later in my left.. GP didn't know what it was .I'm undiagnosed and waiting to see a neurologist. Other symptoms are tremor vertigo, tinnitus, involuntary movement of limbs, muscle twitching and buzzing in feet legs and head.

Hi I’m just recently new to the website, I was just recently diagnosed with MS, I’m 30 and up until a couple of months ago I was living life normally, I took a bad flu bug over the Christmas season and had really bad tension headaches over my head and neck until one morning I woke up with diplopia and tingling down my left arm. I was taken to hospital had an MRI and a lumber puncture where they found inflammation in my head and spine then the results from the lumber puncture came back positive, I was in limbo for a few weeks until I fell scraped my face trying to break my fall with my weaker arm. The consultant at the hospital told me there was slightly more inflammation in my second mri to my first and since then I’ve experienced numbness in my feet, legs up to my waist. Neurologist confirmed it is MS and wants to do another mri on my head and spine. I have no idea how severe the progression of my ms is yet. Just looking for any information no matter how small just to help get my head around it all. I feel this diagnosis has came on very quick as well as the symptoms and feeling worried about my independence. Many thanks, Cheryl

Hello People,

I've not long found this site, i may or i may not have Ms. I'm waiting to see, but i've not been well for a long time. It must have been about 18yrs ago my Gp sent me for a kidney biopsy 'cos i was so tired all the time. They told me not to worry but still called me back every year to take blood and wee in a bottle.

I started to have double vision about 15yrs ago. I think it may have been there earlier, but i didn't notice it as much until after i'd had the cataracts in my eyes done. I always say probably after the cataracts, i could see better, that's why i noticed it. They've given me botox a few times, and i've had a couple of operations for the diplopia. It all helped for a while but then it slipped back. The operations they did were. There are muscles at the back of the eye, and they weren't pulling equally, so i was put to sleep while he cut one. He's told me he'll do it again if i want, but if i can just learn to live with it. I go back there every 6mths.

When i was on  one of my routine checks at the kidney department, i saw a different doctor and he suddenly said without any warning..... take your pants off. And he started examining me, i was dead embarrassed, i hadn't been expecting this. Then he asked ..... How's your sex life !!! Even more embarrassed i said something stupid like, .... well we'd all like more, wouldn't we. After that they started calling me back for checks every 3mths. But nobody said why.

I noticed my balance when i was walking, it was as if i was drunk, about 7yrs ago. I had pains in my calves and asked my Gp about DVT, but they just fobbed me off.  My walking and tiredness was getting worse and worse, i've fallen many times, the worse was down 8/10 conctrerte steps and off a bus, but also at home and just stepping off & on kerbs. Then my doctor arranged an MIR scan (next month). Still nobody said, we think this is what's wrong. And i wondered what have wobbly legs got to do with my brain. Then by pure chance i saw a woman talking on Tv, she'd been for a MIR, and had so many of the problems i have, and she mentioned MS............ MS. What's MS ???

So i went to my trusty computer to ask Dr Google. And i found this site.

What do they do for MS. I have debilitating low back pain , when I bend over to work at something it feels like I will break in half , I have the numbness in hands , feet, muscle spasms in legs, trembling legs, twitching eye lid, weird sensation on my skin hurts to touch (face). What do they prescribe for pain? I now take pregabalin for nerve pain. Help . Lots of other symptoms to many to name . Also has tavlar cyst on S2 nerve joint ! Help would be appreciated. Thanks 

Just got home from the hospital after having a scan. I must have only been about 15mins, all the nurse said was go and see your doctor in about a week. So phone and the next appointment is 10days, the 22nd. It's a case of wait-and-see until then.

Firstly want to point out I am no medic, but a 15 minute scan (assume MRI). Not sure what they can deduce from that? Very little in my opinion unless it is just to rule out other conditions such as arthritis, disk trouble in back, etc. My MRIs in general last 30 to 50 minutes and tend to be very thorough as they scan both back and brain.

I also suffer from bloody awful back pain and joint stiffness and in terms of medication, I am on a drug called Gabapentin. Many on these forums declare it causes weight gain but I find it is only thing that controls my pain. Take 8 x 300mg tabs of it which is near upper limit allowed. Take over x3 times daily plus a tab for Vitamin D which yet unknown how but helps in treatment of MS (by the way I have RRMS).

Hope u get sorted. As many on here also agree, MS is not easy diagnosed and don't want to alarm but it can take a while. Keep your chin up we could have worse and best to get it right in the end.
Regards

Bracknagh wrote:

Firstly want to point out I am no medic, but a 15 minute scan (assume MRI). Not sure what they can deduce from that? Very little in my opinion unless it is just to rule out other conditions such as arthritis, disk trouble in back, etc. My MRIs in general last 30 to 50 minutes and tend to be very thorough as they scan both back and brain.

 

It was only my head they did. A MRI brain scan.

Brain they must be looking for lesions then to rule in MS. I had friend whom had Optic Neurotic pain for months and blurred vision but took em a year to confirm it was MS .

Bracknagh wrote:

Brain they must be looking for lesions then to rule in MS. I had friend whom had Optic Neurotic pain for months and blurred vision but took em a year to confirm it was MS .

 

 

So it could take a year before i'm going to find out anything  !!!!

My balance when i walk has been terrible for perhaps 8ys, and my Gp has just brushed it off. But the last year it's worsened and i've had quite a few falls, so that's when my Gp made an appointment for me to have a scan. He never said why, but i've been searching the internet and it seemed to explain other symptoms that are long going.

I've just completed a claim for PIP, so if anything is wrong i was hoping to find out before they call me in for a medical.

Hi everyone!

I'll try not to make this post to long but I'm prone to waffling, so I'll apologise now if this ends up epically long.

So, some background....

I was dx with hypermobility syndrome around 20 years ago, when I was ten or eleven. As far as I know, I don't have EDS, so that's something at least.
Starting when I was about 22 or 23, I started to experience symptoms that I would describe as having a 'very tired' leg, like one of my legs just wasn't quite moving as quickly and easily as the other. In my true style, I basically ignored it for a few years, putting it down to the fact that I literally was tired from working a job that had me on my feet all day. This continued for a while, once every few months I would have this tired feeling and I continued to assume nothing was really wrong as it didn't affect me too terribly. Until I started feeling the familiar pains in my knees that resulted in my hypermobility dx. Off to pysio I went, but since I was a lazy 20-something with better things to do, I obviously neglected my exercises.

Fast forward a couple of years to the week of my 28th birthday and picture the scene.....

7:30am on a rainy, miserable, cold February morning and I'm walking to work. I now work an extremely stressful desk job and I'm looking forward to being off work the following week for birthday chills - hooray!
About ten minutes into my walk, the old feeling of weakness came back, only this time much worse. As I carried on, my right leg got weaker and weaker. Being hypermobile, I couldn't control my right knee from over extending backwards and locking up. I slowed down to a snail pace, all the while the rain is getting heavier and I'm getting colder, stiffer and more distressed. I started to cry, because I didn't know what the hell was going on (and let's face it, no one can tell you're crying in heavy February rain)
Rather than calling my mum to come and rescue me, I persevered on, nearly tripping a fair few times as lifting my right leg started to become nearly impossible. I eventually limped into work, thoroughly drenched and feeling properly rotten.

For the rest of the week, my poor mum had to ferry me back and to everywhere because I couldn't physically walk for longer than 10 or 15 minutes. She watched me walk up and down the hall, apparently it looked like my right knee was 'snapping' backwards.
Off to the docs I go, who confirmed I was indeed hypermobile (well..... yeah) and suggested referring me for an MRI as I was also experiencing some numbness to the leg, something I had experienced a few times before, but without weakness)

Eventually, it went away as suddenly as it had started. The MRI never happened and I forgot all about it. I now know this was probably my first real relapse.

Almost 12 months to the day, the exact same thing happened in my opposite leg. Back to my mum being my chauffeur for the week and another GP appointment. I was referred to physio, and duly I went to my weekly appointment and did all my exercise daily. Gradually the symptoms got slightly better until one day, walking to work again, I was in so much pain in my hip that I had to go home sick. My right hand had also started to develop a strange stiffness, particularly when typing, and I was struggling to carry two mugs of tea. I rang my GP and it was suggested I go to the musculoskeletal service instead and I might 'have a bit of fibromyalgia'.

I go back to my physio who agrees they probably can't do much more at that stage and discharge me, supporting my GP decision to go to the MSK service and probably look at rheumatology. The lovely MSK doctor and a good look at my joints, confirmed no nerve damage and sent me on my way.
This was probably proper relapse number two.

This year, January. I've just landed a new job and moved to Wales before Christmas to FINALLY be wit my long-term partner. Feeling pretty good until the Beast from the East shows up. Thankfully, Llandudno has salty sea air so the snow didn't stick around, but man it was COLD. Something also happened that I wont go into detail about, but it caused a huge amount of stress to myself and my partner. It's still happening, and we're still stressed, but on with the story......

Walking to work one day in January, it happened again, only this time was far worse. I was at the point where I started to wonder if a zimmer frame was a viable option before you turn 30. I was finding strategic places where I could stop and rest whilst still appearing casual. I became numb from my right shoulder blade down to my toes. Back to GP, FINALLY get referred for that MRI scan (yay!)
MRI scan happens on a Sunday, Monday afternoon my GP rings to tell me to come in. I couldn't, since I now work in Wales and my GP is still back in England, so I went the following day.

My GPs words - the results are highly indicative of multiple sclerosis - this was my third and worst relapse.

I didn't cry until I got home and even then it was only for a bit, because my symptoms had a NAME, and I wasn't going crazy, but I wonder if this could have been diagnosed several years earlier if GPs didn't focus on the hypermobile/physio aspect..........

Currently, the weakness in my right side hasn't 'gone', it just picks and chooses when it'll show up and sometimes it's not there at all! Frustrating, to say the least....

Long story indeed. You must have RRMS like me. Mine started after a I had pulled my back and I was walking lob-sided. I was trailing my left foot which was first picked up by my partner who pushed me to go to my GP. To cut a long story short took about 1.5 years to get a final diagnosis of RRMS.

Like yourself I did not mop too much about it as at least it was a diagnosis. Am on medication for the MS which is slowing its progression and on pain killers for back pain which seems to stem from it but could be attributed to my poor walking style.

MS is a funny beast. Some days I am fine but others feel crap and seems to be worst in cold climates; by the way lack of Vitamin D also is attributed to MS and I also am prescribed Vit D supplements so ask your GP for same.

Finally, it is thought it lies dormant in our bodies for years before you have any relapses.

Good luck

Thank you

I suspect RRMS too, the radiologist report gave me the semi-answer I hoped wouldn't happen, but secretly knew it would.

I have my first neurology appointment a week today and despite not being religious at all, I'm praying they don't cart me off for a lumbar puncture - I am sickeningly afraid of needles!

The elephant in the room im going to ask about may already been discussed in a previous forum but ile ask anyway Whats with the battle to get diagnoses!! for gods sake im sure the majority of us was bery quickly diagnosed at the start  of our symptoms got a quick unfounded diagnosis of CFS and then symptoms get worse or new symptoms arise quick as that you then get told you have Fibro!! dos anyone have the aanswer?  Have the medical world  have bets on how many they dont diagnose. I am in the medical profession and seen manu miss diagnosis but we have come out the caves now and diagnose people on symptoms effecting their lives, not like any 1 of us would lie to get a lable of MS. Thankyou tant over

Firstly the lack of NHS Neurologists so getting an appointment takes about 9 months here in Wales, even if your GP says it's urgent. Secondly if you pick up some of the symptoms early they may not affect the Neuro tests like squeezing someone's fingers and whether you can still walk in a straight line, at which point they tell you its nothing worrying. 

For me I know myself, I know something is wrong whether it's MS or not but I've got nowhere in 10 months except a handful of waiting list letters. One GP seemed to think a holiday would cure me but I've tried that twice and actually the travelling makes the symptoms worse for a few days. I think not knowing is worse than learning to live with the diagnosis. 

Just my opinion from what's happening with me. 

would appear by the time some of us get diagnosed meds would not benifit us!  Just thought id put that out there

Hi, I have been going to the doctors for two years now and I wanted to see if you guys can help.  I first started having severe headaches and I went to the ER and they said I had migraines and they gave me medication for that. couple months past and the pain went away for a month or two and it came back and they sent me to a specialist.  at  this time I started getting nosebleeds ,shaking in my arms legs and hands, blurry vision, numbness in my legs arms hands and face and we also started noticing that my blood pressure was high.  They still suggest that it is my greens but I do you have brain clot in my family on both sides and strokes. 

Hi can anyone give me their opinion on my story.

I was diagnosed with fibromyalgia around 4 years ago and am taking amitriptyline, gabapentin and pramipexole.
I have recently been diagnosed with spinal arthritis and cervical stenosis after suffering burning sensation in right arm and numbness and tingling in
Right hand and foot, I also suffer severe neck pain and stiffness which causes severe headaches. Last year I had suspected optic neuritis which was never confirmed. The last dew weeks I have had a really a tight painfull feeling around my chest, I was looking this up on google and came across the ms hug,
I am concerned now but don’t want to run to my gp without good cause. I would appreciate any thoughts.

Rosies

Am no medical expert but know fibromyalgia and MS are very alike in terms of symptons.  Have u had any MRIs? Cause you will find it difficult to rule out MS when u have the fibromyalgia. I am also on gabapentin as pain relief from back pain due to RRMS but not convinced of its usefulness.  You need to pester ur GP to get MRIs as now seems to be most favoured tool to diagnose MS.  Good luck.

Hi, Im new here. I have an appointment with my GP soon and have written this as I find it difficult to express myself. I am almost certain that I have MS and would be relieved if it was diagnosed. However I am aware that Dr's do not like giving this diagnosis just from previous experience. However, I know that I have been experiencing symptoms very similar to MS and would be so relieved just to hear a diagnosis as I think I am going mad now. Please read the following and see if you think I am on the reight track. I'm aware that MS is very complex and the difficulties in diagnosing it. but I am getting to the point where it really is affecting my mental health.
Age 15: Shingles in left side of head. Required hospital admission.

Age 19ish: Unable to pass urine, loss of feeling in right big toe, spasms and severe sunburn feeling in both legs. Several neurological examinations, lengthy hospital admission. Some discussion regarding possible MS. Diagnosis of Transverse Myelitis. Treated with steroid injections.

Age 19 to current: Same sunburned feeling in different parts of body i.e. legs, arms, groin, anal and genital region, pain when passing urine when in genital region.

1999: Diagnosed with type 1 diabetes & recognised as autoimmune disorder; led to several years of high volume insulin injection i.e. full pens of basal/bolus and high weight gain. Onset of neuropathy symptoms in feet shortly after.
Onset of depression/anxiety and later required medication.
First DVT shortly after. Onset of sleep apnoea required to use CPAP machine.

2000ish to current: Several episodes of cramping and muscle spasms, mainly in legs (most severe in shins) and in hands/arms. Some query re type of diabetes but after episode of DKA & hospitalisation due to blood sugar being “off the scale” of monitoring machine. Confirmed as type 1. Symptoms of chronic fatigue commenced shortly after.

2008: RNY Gastric Bypass led to severe weight loss i.e. 10st in 1st year. Stopped taking insulin, re-diagnosed as type 2 diabetic. No diabetes medication required for several months but intermittent medication required since and to current date, both oral and insulin injections. Continuation of chronic fatigue and depressive/anxiolytic symptoms.

2009: Onset of alcohol dependence after several major disturbing life events and heavy drinking due to stress, lifestyle & chronic fatigue. Diagnosis of Thrombotic Syndrome after severe period of DVT like symptoms.
2013 (ish): 3 years abstinence due to use of Disulfiram (Antabuse). Started to work as volunteer to help with references. Onset of worsening eye sight and hearing. Started with tinnitus in right ear (hissing sound).
2015/16: Returned to paid work after period of slight improvement. However, continuation and worsening of fatigue, neuropathic/sciatic symptoms and depression/anxiety. First noticed bad hearing problems and diagnosed with hearing aid treatment. Hearing has deteriorated since and now have bad hissing in right ear. Several occasions of severe sciatic pain in left shoulder up to date.
2017: Worsening of alcohol use/dependence. Led to dismissal from work. Several fractures to ribs, shoulder etc due to falls. Onset of plummeting blood pressure on standing, leading to passing out. High degree of immobility due to inability to walk and feel feet leading to further falls (not only whilst using alcohol). Still continues to date despite cessation of propranolol.
Admitted to Bewerley Croft (transitional housing unit) due to inability to cope & look after self.
Continuation of sciatic issues in shoulder and worsening of supposed neuropathic symptoms in legs and feet, also 2 further DVT’s, last suspected in both legs. Use of walking stick now required to walk small distances. Noticed what was previously thought to be neuropathy due to diabetes has worsened.
Late 2017: Herniated disk in lower spine leading to total immobility for several months & extreme pain i.e. 10 out of 10 (unable to lay flat, had to sleep sat up on sofa, had to be administered gas & air to take me to hospital A & E department in ambulance. MRI ordered and showed severely herniated disk in lower back. Still waiting for corrective surgery despite being flagged as urgent. Have to use wheelchair, initially for everything but now for anything further than exit to the building.
Some pain in right leg has now diminished but not in left leg and still experiencing “Buzzing or Pin & Needles” in both legs but now mainly in left again”, numbness to lower legs and feet and inability to walk ok. Danger of falling and tripping is still severe. Have to continue to use wheelchair for activities such as shopping or distances over a few meters.

Neil B wrote:

Hi, Im new here. I have an appointment with my GP soon and have written this as I find it difficult to express myself. I am almost certain that I have MS and would be relieved if it was diagnosed. However I am aware that Dr's do not like giving this diagnosis just from previous experience. However, I know that I have been experiencing symptoms very similar to MS and would be so relieved just to hear a diagnosis as I think I am going mad now. Please read the following and see if you think I am on the reight track. I'm aware that MS is very complex and the difficulties in diagnosing it. but I am getting to the point where it really is affecting my mental health. Age 15: Shingles in left side of head. Required hospital admission. Age 19ish: Unable to pass urine, loss of feeling in right big toe, spasms and severe sunburn feeling in both legs. Several neurological examinations, lengthy hospital admission. Some discussion regarding possible MS. Diagnosis of Transverse Myelitis. Treated with steroid injections. Age 19 to current: Same sunburned feeling in different parts of body i.e. legs, arms, groin, anal and genital region, pain when passing urine when in genital region. 1999: Diagnosed with type 1 diabetes & recognised as autoimmune disorder; led to several years of high volume insulin injection i.e. full pens of basal/bolus and high weight gain. Onset of neuropathy symptoms in feet shortly after. Onset of depression/anxiety and later required medication. First DVT shortly after. Onset of sleep apnoea required to use CPAP machine. 2000ish to current: Several episodes of cramping and muscle spasms, mainly in legs (most severe in shins) and in hands/arms. Some query re type of diabetes but after episode of DKA & hospitalisation due to blood sugar being “off the scale” of monitoring machine. Confirmed as type 1. Symptoms of chronic fatigue commenced shortly after. 2008: RNY Gastric Bypass led to severe weight loss i.e. 10st in 1st year. Stopped taking insulin, re-diagnosed as type 2 diabetic. No diabetes medication required for several months but intermittent medication required since and to current date, both oral and insulin injections. Continuation of chronic fatigue and depressive/anxiolytic symptoms. 2009: Onset of alcohol dependence after several major disturbing life events and heavy drinking due to stress, lifestyle & chronic fatigue. Diagnosis of Thrombotic Syndrome after severe period of DVT like symptoms. 2013 (ish): 3 years abstinence due to use of Disulfiram (Antabuse). Started to work as volunteer to help with references. Onset of worsening eye sight and hearing. Started with tinnitus in right ear (hissing sound). 2015/16: Returned to paid work after period of slight improvement. However, continuation and worsening of fatigue, neuropathic/sciatic symptoms and depression/anxiety. First noticed bad hearing problems and diagnosed with hearing aid treatment. Hearing has deteriorated since and now have bad hissing in right ear. Several occasions of severe sciatic pain in left shoulder up to date. 2017: Worsening of alcohol use/dependence. Led to dismissal from work. Several fractures to ribs, shoulder etc due to falls. Onset of plummeting blood pressure on standing, leading to passing out. High degree of immobility due to inability to walk and feel feet leading to further falls (not only whilst using alcohol). Still continues to date despite cessation of propranolol. Admitted to Bewerley Croft (transitional housing unit) due to inability to cope & look after self. Continuation of sciatic issues in shoulder and worsening of supposed neuropathic symptoms in legs and feet, also 2 further DVT’s, last suspected in both legs. Use of walking stick now required to walk small distances. Noticed what was previously thought to be neuropathy due to diabetes has worsened. Late 2017: Herniated disk in lower spine leading to total immobility for several months & extreme pain i.e. 10 out of 10 (unable to lay flat, had to sleep sat up on sofa, had to be administered gas & air to take me to hospital A & E department in ambulance. MRI ordered and showed severely herniated disk in lower back. Still waiting for corrective surgery despite being flagged as urgent. Have to use wheelchair, initially for everything but now for anything further than exit to the building. Some pain in right leg has now diminished but not in left leg and still experiencing “Buzzing or Pin & Needles” in both legs but now mainly in left again”, numbness to lower legs and feet and inability to walk ok. Danger of falling and tripping is still severe. Have to continue to use wheelchair for activities such as shopping or distances over a few meters.

Hi just thought i'd include an update: Since my last post (above), I've had operation on herniated disk, developed blood clots in both legs. Also lost use of left hand and experiencing severe pain in left shoulder and arm, some numbness in left hand like pins and needles from mild to very painful like very sharp pins in thumb and fore finger. operation to spine has relieved some pain and loss of feeling in upper right leg and side of lower leg. However, still experiencing buzzing in both legs (more severe in left leg) and severe burning and aching in feet although under toes feels numb, as if wrapped in cotton wool.  More episodes of cramping in hands causing them to contract and curl up along length of hands. Continue to use wheelchair and stroller frame. Currently have noticed difficulty in speech i.e. getting words mixed up, having to force words, short term memory difficulties i.e. cant remember words or conversation or where I have put things just after putting them down leading to frustration and panic, problems with coordination/balance, spasms in lower back/upper right leg and groin, constant head ache & sleepiness. Had further MRI on Head Neck & spine but no results as yet. Had EMG in left arm which showed some problems but needed further analysis by neurologist. Received appointment to see neurologis on 22nd ovember so will update forum after this.                          

Hi im new to this site havent been diagnosed yet.I went to my doctor a yr ago with pins needles and a feeling of having a hot water bottle in my right thigh pins and needles and dizzy spells.he said to return if symptoms returned which they have it was exactly a yr since i had been/he referred me to a neurologist who has referred me for a mri and a lumbar puncture ,Would he want these tests done if he thinks i have ms.Also really nervous about lumbar being done.

I’ve just recently just been diagnosed with MS , I had tingling pains all down the right side of my body for a total of 10 weeks and was making me struggling to do a lot of things, after 3 doctors appointments I was finally referred to the hospital and they gave me several blood tests and I had a MRI scan and a lumbar puncture , 6 weeks after I ,got my results and it was positive for ms and also the blood tests came back positive for sarcadosis which am waiting for a letter to get a chest scan. All very new to this and just have so many questions , but the symptoms have worn down and am back to doing normal day to day things . Sitting my school exams while managaing all the docter and hospital appointments was so hard but luckily manage to keep a positive attitude towards it all

Since being diagnosed with MS a month ago I’ve had so many symptoms double vision, tingling in hands and arms, numbness from my feet to my waist all have subsided still have numbness on the last two fingers of each hand and Lhermitte’s sign as soon as I look down I get an awful buzzing down my whole body it feels like I can actually hear it. Feeling pretty down about it all though, up until a few months ago I was absolutely fine and now I feel like I’m treated like a poor soul that can’t do much for myself which is not the case. I was wondering if anyone has had a lot of symptoms like these then been okay for a while? I’m worried, waiting for another mri scan on my spine but I’m still worried about how severe this is going to be?

Hi all,

New to the group and this looks like the "introduce yourself" thread :)

My first "episode" was back in 1993 where I lost all feeling, strength and co-ordination on my left hand side. Fortunately I had a good private health scheme through employers at the time and was seen pretty quickly resulting in an MRI scan. I was told at the time that it was probably a virus issue but that it could be MS. As it happened, symptoms cleared up after about 6 months and the issues were deposited in the depths of my mind and memory.

When I think back, I've probably had issues over the years which I've convinced myself were not related but, in all probability, were until a couple of years back where I started to have similar symptoms on my right hand side. I decided to break my rule of not bothering the GP unless it was something that I was really concerned about approximately 6 months ago and have been diagnosed with RRMS two weeks ago.

Currently waiting for an appointment with the local MS nurse and for a Lumbar Puncture and then back to the consultant to discuss possible treatment. In the mean time I'm using this site to "gen up" on MS and what it's likely to bring in the years ahead.

Many thanks for the resource, seems like a good place to be to keep informed.

Good luck and all the best to those dealing with MS.

Hi all

Really don't know if I'm on the right site here but hoping for a little advice! 

6 months ago i started having extremely bad stomach problems - obviously never thought of ms but 3 months ago i woke up to tingling in my left hand and a loss of grip (annoying being left handed !) Again thought little of it just happened to mention it to gp, she sent me to physio who said i have a weakness down my entire left side and he wants  me to have neurological tests asap! Slightly concerned at that point but thought little of it, last 2-3 weeks however my whole left arm feels like it doesn't belong to me anymore can barely write my own name or text (God he!p) 

 

Also now having a very odd sensation in my lower leg feels very weak one minute and stuff the next.

Basically my question is - is this a 'normal' timeline for things to happen? I naively know nothing about ms (sorry!) I thought it was a slower progression then a few weeks/months 

Any advice will be gratefully received!! 

Emmagaretb

MS presents itself many different ways and the degree and type of symptoms vary from person to person. That said there are none of your symptoms that are amongst common symptoms across the majority of MS patient; e.g. double vision, fatigue, etc. Loss of power on your left side might point to a mini stroke. I am not however a medical expert and I assume you will need a battery of tests including nerve conduction tests and MRIs to try and get a firm diagnosis of your situation. Good luck with that.

Hello. I am very new to this site and currently dealing with my brain rumbling round wondering if my symptoms are MS. I have only told my daughter who usually says Mum you're fine but on this occasion didn't. My main symptom is the feeling of something crawling on my right wrist so many times a day and sometimes I feel like I have something trickling down my hea above my left ear. I suffer from vertigo particularly in lifts, I don't know where I am when I go up more than one floor. Last Sunday I had a very bad episode of dizziness and was spinning round drunk like for about 2 hours. I also have tingling in my fingers rather a lot. I occasionally have speech issues but I very much put that down to anxiety - I do have lots of stress in my life! It would be great to say hello and see If anyone has any advice or comfort. I am seeing a neurologist on Wednesday - referred by my GP but referred with him thinking I have had a TIA. I don't think I have. Thank you so much. Sarah Aged 46

Hi, I'm newly diagnosed. 5 weeks ago, I woke with slurred speech, sounded like I was drunk. This has happened a few times in the past couple years but usually cleared up within hours, this time I had it from friday and it didnt improve by monday. I called my gp and was told to go to A&E. They gave me CT scan and admitted me thinking id had a stroke. Later that afternoon, another dr insisted I had an mri as he didn't believe it was a stroke. I was diagnosed with RRMS. I needed no further tests as they said they had enough evidence to be absolutely certain. Im waiting to see an ms specialist, I had an appointment but it was pushed back 4 weeks. I haveknow no answers to my questions which is frustrating. I believe my symptoms started around 3 years ago after I had numbness and tingling in my arms.

Anonymous

Sarah-bie, how did your appointment go on Wednesday? Hope all ok. 

Anonymous

Hello, I am new to this forum. After typical MS symptoms in 2013 they found lesions after my MRI. When the doctor said MS he also said I needed to have a spinal tap. I left the office and never went back. This past Dec I went to a new neuro and he suggested a spinal tap, I left again. Then I had symptoms for 2 months. Even though the symptoms are now all gone I am scheduling to see another new Neuro and I am pretty sure he will also ask for a spinal tap so I need to really consider it. Can someone be super honest about the spinal tap and the pain of having it and do I really need to have it if my next MRI shows new lesions?
Thanks, Lane

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