Sallum your sx sound just like mine resulting in a 6th cranial nerve palsy. What does RRMS stand for ? I know what CDMS is. All the best with your treatment. It just shows from your post how long this process can be. Take care x
Hi Trueman, how are you feeling these days, when is your scan? I am asking cause I have exactly the same symptoms as you ( from what you say), the numbness in my arms ( at night only), tingling that comes and goes etc. I wonder how you are getting on, its been 5 weeks for me now, I feel like I am under attack, but still hoping! going for my cervical scan in few days time xx
Hi Margaret. Thank you for asking how I am. I’m a little more sane this last week! Yes, I have a varied set of symptoms that aren’t ascribed to MS. But will be having a brain and neck MRI but the appt hasn’t come through yet. I’ve suffered various symptoms for years now but generally have got on with things. A lot of the time put down to anxiety despite being diagnosed with PNH - constant twitching even my tongue! I seem to have ‘flares’ when my muscles go into spasm (even esophagus)or cramp or shooting pains a lot of the time extremely stiff and sore, alongside small amount tingling, a balance/coordination issue but like vertigo and being disorientated, trouble focussing with movement. Weird heightened sensations. And episode of suspect trig nerve (3rd time). Loads other things ha ha. I’m leaning towards other things than MS since as you said I don’t get numbness other than at night. Complete loss of arm or leg!
How ow are you managing Margaret? It’s hard when you know your body isn’t quite right but are in limbo. I hope you get further with your symptoms soon. I’m lucky I work from home else I don’t know how I’d cope!
I was never really told it was ms, but more of a possibility this was due to complications at the time as, sitting under my brain next to the nerve was an infection in my sphenoid sinus, the size of a golf ball! At first they thought it was a brain tumor,So, when I had my second relapse I was told it was Relapsing Remitting MS and to see how it developed! Luckily its been on the slow burner with just small sensory issues, which I never really classed as a relapses. Then came a much bigger issue this year. The guidelines have now changed so I read all the info, got my gp to refer me for an mri before I saw the neuro so we were prepared to start straight away. Its been a long wait since April but now all im waiting for is a call to let me know when delivery is. MS is different in everyone but it can easily switch to become more a agressive form. What is CDMS? Do you mean Clinically Isolated Symptom?
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Hmmmm. The first thing that made me go to GP was that my speech was very slurred. I had woken a few days earlier with a lisp which I thought was strange but I honestly thought I had just bitten my tongue in the night. However when I discovered that I couldn’t write properly either I was a bit worried. Within 2 days my speech was noticeably slurred and my writing was reduced to spider scrawl and I knew something wasn’t right. My GP has always made me feel that I am wasting his time but on that occasion he said he didn’t know what had caused this but that I needed an urgent brain scan. Needless to say, I was scared witless as I had thought I was a fairly healthy person until that point!
The only thing that may have caused alarm, now that I know it is MS, was that for a few weeks prior to this I had been waking with a numb hand but I had put that down to sleeping in a funny position. I had had a stiff neck once or twice so I had put that down to sleeping badly too. The only other thing was that I had had a dizzy spell lasting about half an hour about 3 days before the lisp appeared. I did thing I might have to take the day off work because I was having such trouble that morning but it cleared up as suddenly as it had started so I put it down to ‘coming down with a virus possibly’ and carried on with life.
Even when I found myself in hospital waiting for the MRI, I could’ve helped the doctors more if I knew what they suspected but they wouldn’t tell me anything. As I was fit and well physically, I went for a little wander around the corridors when I was bored. I had no visitors as the hospital was closed due to the norovirus and phone calls were a little tricky due to the awful slurred speech so I often went walkabout. I found myself bouncing off the walls a lot though and just thought that I was more clumsy than usual. If they had asked about my balance and co-ordination, I could’ve given them another clue because of course, it’s something that still happens a lot on a bad day and now I know it’s part of the MS.
Hindsight is a wonderful thing, isn’t it?
Tracey x
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My first symptom was not long after my daughter was born 4 years ago. I remember feeling extremely tired, worse than what I’d ever felt. I actually thought I was coming down with something nasty, which in a way I guess I did I then noticed double vision when looking to my left. It slowly got worse, as it spread to my central vision as well. I was diagnosed as having bells palsy and whilst I was still under the eye clinic I then developed more symptoms of tingling, so was then referred to a neurologistx
It took about a year after that to be diagnosed following further symptoms
I was told I have clinically isolated syndrome after experiencing numbness from the waist down that last for months during the summer last year. I was encouraged to go to the doctors expecting to be told I got a trapped nerve (had a bad back for years). The numbness disappeared as quickly as it came, I then started getting numbness and tingerling sensation in both hands and was unable to wash my hair due to the feeling I had when I touched wet hair. Touching paper was also really uncomfortable. I had a brain scan which identified 5 lesions followed by another MRI on my back which also showed demyelation. I lose the strength in both my arms frequently and feel extremely tired. My hands are a little better but today I am experiencing pain in my arms and now my legs. I was told by my neurolist said he didn’t want to see me for 9 months unless I have a new symptom. I have been given gabapentin of which I am now on 900mg a day. Not sure what is classed as a new symptom or whether these tablets are working? If not do I ask to have the medication increased or changed. I have been given no other info other than I have not got ms but I might in time develop it? I often feel down & have no energy and can sleep for hours!!
Looking back I think the very first time I noticed something 'off ’ I was in John Menzies, having just been to the cinema to watch Saturday Night as Fever (not my usual choice,I was just bored!) I was looking for a magazine and staggered sideways into someone, when I left the shop with a thumping headache, I bumped into my boss who said “don’t come into work tonight looking like that, your eyes are like two pisss holes in the snow!”, such a charming man! next a couple of weeks later, having been out, I just could not stand up (and no drink involved, BYOB,and we didn’t) good job I only lived round the corner, my friend Dan carried me home, down the stairs from the club, approx 200 yds home, up the stone steps and interior stairs to the flat, pretty much carried on with odd events like that (78/79?) until 87ish when I started getting totally numb leg and coul not feel my feet finally after my GP decided that maybe there was something wrong and I wasn’t imagining it all, diagnosed Sept '98, quite a long time!
About 3-4 months ago I had pains in my right leg. They were moving about from calf to thigh, groin, buttock. I then had a weird cold feeling in my foot which persisted for a few weeks. Occasionally pain would appear in my left calf also. Visiting GP he was concerned about the weird sensation so was going to take bloods review and he said possibly refer depending on results. I had a night out which resulted in little sleep with a few drinks. The following day, both legs were hurting and I was overcome by a bout of fatigue which lasted 2 days. Back to GP and he referred with an ‘urgent’ to neurology. I was contacted yesterday and am expecting a call regarding appointment in 3 weeks. However, I seem to be going downhill fast, mainly things hurting, sensitive skin, which seems to be worse at night… Being kept awake in discomfort is the worst. That’s the escape, when you sleep.
Im hoping for a good encounter when I see the neuro, don’t know what to expect. Will he send me for MRI straight away? Im 42 / male and from what I have read i am expecting a diagnosis of ppms. It feels as though my life is on the brink of ending. I look at my 19 month boy and cry at the thought that he will not have the dad his brothers had.
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Hi my symptoms started with freezing feet, then double vision which cost me at optician, getting new lenses. This was at the start of December 16. Went to gp on 28 December he done all the checks and put a referral in to neurologist, then went to A&E on 2Jan 17. Apparently I was a mystery!
GP gave me a MC to cover my work - I now was struggling to walk my right foot and cold numbness in my right hand, vision was still double, tightness round middle, balance and dizziness were horrible. Couldn’t stand the smell of food didn’t eat much.
Called gp on 26 Jan as I couldn’t go on like this, I have a 12 year old son. I was admitted to hospital underwent a number of tests MRI, CT, lumbar puncture loads of blood tests. My neurologist appointment was changed brought forward to 30 Jan instead of 10 Feb. I was told I had MS. I have just been discharged from hospital after being in for 2 weeks. Still trying to get my head round this.
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It’s a headbanger alright. It will probably take you some time to get it sorted in your head. But don’t expect one day to wake up and find you’ve ‘accepted it’ and are ‘OK with it’. It’s truly a kick in the teeth. Don’t feel bad that your poor head’s still in a spin.
Generally people are diagnosed with relapsing remitting MS. This means when you next see your neurologist they will talk about starting you on a DMD (Disease Modifying Drugs). Have a look at: MS Decisions aid | MS Trust
You’ll find that there are lots of resources both on the MS Trust website and the MS Society website (i.e. this one).
You should also be given an MS nurse who will be a good friend to help you through understanding this time, your symptoms and drug options.
This forum and the Everyday Living forum are also helpful. If you have a specific question, start a new thread by hitting the button marked New Thread, give it a title and post whatever you need. There are often people on here who will try to help out, either newly diagnosed like you, or old hands like me.
Best of luck, give yourself a good rest and try not to worry.
Sue
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Hi everyone I’m waiting on news to see if I have this condition,I’ve had blood tests done,I’ve tingling in hands and feet,painful legs and I fall over a lot and bump into things,I have eyesight problem I use a cane and I’m tired all the time.
I had my first symptoms in about 1980. Numbness down the right side of my body, combined with double vision. I had a few tests, including a lumbar puncture. All the GP could say after that was “it might be MS, then again it might not”. Those symptoms went away and I lived my life…brought up three children…happy days!
Then a couple of years ago I got the most awful fatigue (you all know what i’m talking about right? LOL)…I developed a limp and was referred to a neurologist. I was diagnosed with RRMS in February 2016. It turns out that I have had other symptoms in the years between my first symptoms and getting diagnosed, but the dots were never joined up - least of all by me.
I do have permanent symptoms now - like the foot drop, dizziness and fatigue to some extent is my daily companion, but on the whole i’m doing quite well. Still coming to terms with it of course - these things take time. Having said that it was a ‘relief’ to have a diagnosis because at least then you know you’re not losing your mind(ish)
Juls
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Hey everyone im new to this I have been getting numbness and tingling in left shoulder blade and pain in one leg mostly its all on my left side get pain in my neck and really bad pressure pain in back of head and now i am getting blured vison in left eye i have a mri on my shoulder and they cannot see anythink. Anyone eles getting this
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Hi Freeman
An MRI on your shoulder wouldn’t show up any nerve damage. It sounds like you could do with talking over your concerns with your GP and maybe getting a referral to a neurologist.
Sue
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Facial tingling and numbness, also balance problems, dizzy spells, exhaustion and waking up with dead arm on the side I can,t lie on any more because of the pain!! My sore eye is the left one (keeps going blurry, a bit like there,s a piece of onion skin in the middle) and I stumble to the left a lot.As well as biting my tongue when I’m eating and sometimes catching myself doing a sort of shuddering gasp when I breathe in. GP told me all symptoms may be something else, but to have them all together could indicate MS or something else. I was so relieved she referred me to neurology that I didn’t think to ask what the “something else” could be. Oh dear!!!
Hi sue But after arguing with the doctor for about six months he give me a referral Cuz when my MRI scan back and it was all clear my doctors didn’t have a clue what was going on and they said to get on with it that’s why I’ve been arguing with the doctors lol but looking good know do u have any idea what it mot be
Hiyas, just registered here out of curiosity, largely avoided anything beyond the occasional Google for MS stuff (as much as that can be both best friend and worst enemy). I’d looked a few things up on here but hadn’t signed up until now. I was diagnosed relapsing/remitting around 2 years ago. First sign to me was a sudden shock to my lower leg out walking the dog that left me with thigh numbness. Ignored it for a couple of months then finally went to see my then GP. I’d dislocated my kneecap several years back on the same leg so assumed I’d trapped a nerve or something. Looking back now, my GP had her suspicions as my medical records had labyrinthitis a few years ago, a hand tremor a few years before that which I didn’t even recall and a couple of other oddities that hadn’t lasted long. Referral to a neurologist resulted in an MRI scan for head neck and spine, and me still assuming trapped nerve. Neuro gave me the preliminary MS diagnosis then a 6th month wait for another MRI to confirm it. Thankfully avoided the spinal. Since then I’ve been on weekly Avonex injections with a couple of minor flares. Trickiest bit was telling work and family as until then most considered me pretty invulnerable as I never got sick. Gotta ponder if that was a sign of an immune system working a touch too well!
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Hi everyone,
Im not diagnosed with MS but will go for my second brain MRI in January. The last scan was four years ago and showed non diagnostic subcortical changes. I was relieved as the neurologist said to wait and see and so I dismissed it. Shortly after that I was diagnosed with breast cancer. I had four surgeries no radiation or chemotherapy and assumed all my symptoms were attributed to the cancer. My last surgery involved discovering in the recovery room from the doctor that I had sleep apnea. My GP was surprised due to being 50 and not overweight. So all’s manageable until recently when I’m so exhausted again worse than before I got the sleep apnea machine. My arms start swelling slightly they diagnose mild lymphedema but as it should only be in the arm on the side which had sentinel nodes removed they CT scan brain head neck and MRI of chest for tumors. All results clear but this June sucked!!
So here are my symptoms mainly over the past four years:
1.Constant mainly-change in bowel health, inability to empty my bladder fully, urinary incontinence mainly when I had a cold, mixing up my words, not feeling like I could hold a good conversation as I’d lose vocabulary, fatigue, tense neck, choke on food if talk or think about responding to a question
2.Progressively worsening- left foot cramps(now right foot also and can threaten more often), crawling scalp,itching, dropping things as can’t seem to gauge grasp/ pinch needed to hang on as I walk,some shots of pain or stinging in my legs and arms ( like insect bites) can wake me, fatigue worse.
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Occasional- tired holding my arms to fold laundry or tired hips to waltz with my husband, tired jaw to chew, dizziness,off balance, go to step one way and lunge another, tired of talking/ thinking
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Happened once- sensation of water dripping down back of leg with horrible back and leg pain that went away too fast to be discogenic, tried to order lunch from waiter I’d just recently placed an order with( scary)
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Childhood symptoms ??- double vision clearing before surgery was required, electric shocks through whole body when jumped one summer( just thought I hadn’t been bending my knees), numb patch on left thigh(saw neurologist but cleared after going to chiropractor).
Has anyone else had sleep apnea as a symptom of MS?
These symptoms led me usually so super healthy and strong to the GP who found the cancer thankfully at a really early stage. Now four years later I’m wondering if it wasn’t MS that caused the wheels to start to fall off my wagon.
wow just saw this is very long… my first ever post on a blog …Thanks for sharing your symptoms.
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Not diagnosed yet but will have a spinal MRI before Christmas (we have to wait in Sweden even if we pay 80% in total tax). My first symptoms was lhermittes sign and opticus neuritis (defect color vision in one eye)tingling shoulder and vertigo. Later I got pain in my back and urinal issues. I paid approx 1000£ privately for investigation (Brain MRI and a LP) I had no oligoclonal bands and MRI just showed vascular changes they said. (I’m 54) Right now i have bad back pain and got Gabapetin prescribed. I’m think my is a case of transverse myelitis and ppms. The issues with frequent urination persists. The only symptom I don’t have is fatigue.