I’m 60 years young. Suffered from back spasms for years. Decided to go.private and find the cause. The back MRI showed a shadow in my spine so a brain scan was requested. The results showed conclusively it was MS. It seems I’ve had it for around 10 years. I’ve always suffered fatigue tingly fingers vision disturbances and needing the loo desperately. So now it has a name. Just starting meds to help reduce a relapse. Not sure if know what one was if I did. Thinking I’ve been lucky do far but also thinking if I hadn’t gone for my back MRI would I ever have known.
First thing I lost was my sense of taste.
A few weeks later (hey I’m a bloke - we don’t do doctors ) I lost some ability on my LHS. At this point I went to the doctors (my wife insisted!) and I was sent to the hospital stroke department for a suspected TIA (mini stroke).
One head scan later and it was suggested there may be ‘something’ on my brain.
I’ve had the full lumber puncture/MRI tests and still awaiting the results - I’m hoping the neurologist has a gold envelope with the results in and revels them in a deeply dramatic voice.
The waiting is the worst part - this has all happened quickly to me compared to some on here, even so it’s still infuriating.
Results day is next Thursday - off to buy a new suit for the presentation.
Hi, I’m looking for help in how to put my self across to my neurologist when I meet her. I’ve been suffering from many symptoms for 22 months which include
tingling tongue, pins and needles in fingers, and legs, bad fatigue, pain behind my eyes, drinks seeming boiling hot when they are not , loud Tinnitus, earache, painful lymph glands, costacondritis , painful and aching feet and hands, stumbling , dizziness, inability to absorb what’s being said to me or the written word when fatigued. My blood tests always come back normal
I have been to see all kinds of doctors who feel it’s central sensitisation and anxiety but I feel strongly they are wrong as I’m never anxious and I meditate and practice mindfulness and have done for years. The only thing I’m offered is to learn mindfulness and antidepressants, which I have refused.
Im really worried that now I’ve finally got to see a neurologist, she will also put all my symptoms down to all in my mind and also give me no help.
Does anyone have any ideas how I can put my self across in a way I will be heard and believed. ?
I would be so grateful for any help and guidance.
Nikkilama Think you need to be asking for either an MRI or lumbar puncture to rule out whether you have MS. From what you list as symptons it would seem you have MS. MS presents itself in different ways and not all sufferers have the same symptons. I for example had pins and neddles, loss of power in left limb, terrible back pain most days, etc but did not hsve any vision problems common with many otger folk. I am no medic but good MRIs should show if you have spinal or brain lesions typical of MS which don’t fear can now be controlled very well with the proper medication. Gud luck.
Thanks for writing back. I’ve asked so many times for an MRI and been refused. For some reason I’m not being heard. It’s made me lose confidence . I just want to know what’s going on. It’s scary being this ill and not knowing the reason why. The fatigue and constant pain just make living and working so hard.
Hi Nikkilama, I sympathise with you. I too am in a similar situation. Had loads of tests up to now but only one mri(on brain which was negative) suspect ppms and my gp is pushing for a lumbar puncture and spine mri but still waiting to hear about that. Fatigue and pain is dreadful but nobody seems to realise! Keep fighting for the tests and good luck. Andy
Hi there I’ve been so ill for 8 months severe fatigue pins needles burning in feet legs 24 hours a day if I do anything I’m like a zombie for 2 to 3 days I’ve just been diganoized with small nerve fibre damage but it’s the fatigue I can’t cope with and dizziness sickness I’ve just had to reduce my hours at work I think I might have MS will a neurologist diganoized MS if I have it and how can they tell
hello there …could you tell me more about the running to the toilet at night …this is me.
Hello Issy
This is a weird old thread, people end up answering a post that’s from someone who posted theirs a good while ago. So you may not get an answer to your question.
When you first join the forum, it’s a bit confusing as to how everything works.
Rather than posting in the middle of an old thread, why not start your own? You do this by hitting the New Thread button, give it a title and then post what you need to know.
It might help if you give us some background: are you diagnosed, or at a stage in becoming diagnosed? Or are you just wondering about a specific symptom that sounds familiar to you?
If your problem is constantly wanting to wee, have you have your urine checked for an infection?
If you are infection free but are frequently wanting to go, try and get a referral to your local bladder and bowel service. Ask your GP. Or, I believe you can even refer yourself, but that means tracking down the service details.
Best of luck.
Sue
Hi all, newbie here seeking some possible support.
My story so far: I went to neurologist yesterday after being referred by GP. Frankly I feel frustrated as all hell, even worse you might say than not getting any diagnosis. In fact regardless of all my symptoms, the neurologist declared “if I was to stand up in court and advise on your condition I would say you don’t have MS but I can’t be 100% without MRI”. BUT the thing that has aggravated me the most about that meeting is that the neurologist has suggested ALL my symtoms are merely in my head and a manifestation of me being out of tune with my body, “Dissociation” he called it - I know what that means, mainly because of severe anxiety and depression through the years. The thing is I know what’s real and what’s not, I have never in my life become so disassociated from my body that I have uncontrollable tremor, the main thing is the tremor is there whether I’m anxious or not.
Now I’m at a loss as to what is going on, I thought at least the neurologist might have perhaps given me an indication at least or a possibility of what might be going on with me.
I would just like some opinions anyone’s further thoughts on my situation here.
I have having horrendous sensations of numbness and strange tingling in my head as of late, along with a constant tremor, I have had these symptoms for years but lately I am having more head and neck pain than usual and the tremor has gotten so severe that my legs and arms shake with any pressure put on them at all.
Here’s the thing, I went temporarily blind for 6 months in my right eye at 17 years old after a bout of Optic Neuritis, that is when all these symptoms began, now at 35 years old, I have been basically hiding my symptoms all my life for fear of a diagnosis of anything - ironic now that I’m frustrated and anxious at my symtoms virtually being denied and being told they’re in my head.
Anyway, my other symptoms which to me are undeniable and which have all gotten incredibly worse as of late, which through my life have never left me but are now worse than ever are:
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Complete Hot/ Cold intolerance
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sharp pains/cramps/spasms above groin
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Constant “pressure” sensation and pains in head
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Throat feels blocked/choked (so much so that sometimes food stops going down and I have to try wash it down)
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Easily short of breath
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“bladder” pain and spasms at night with retention/ incontinence
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weakness in arms legs and bad tremor when lifting anything at all
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Constantly urinating
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tailbone sore for no reason with what feel like jolts in my bottom sometimes
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Hearing loss, constant tinnitus (I’m almost deaf in right ear, which happened same time as going blind in right eye with O.N
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Vertigo/ off balance numerous times per day, my eyes “skip” when I try to focus and literally feel sick with dizziness.
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full body jerks through the night that wake me up
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squeezing feeling around abdomen
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Extremely itchy & sometime hot feeling feet for no reason
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Waves of feeling completely drained for no reason
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Muscle spasms in chest and tops of arms/ shoulders.
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Flashes of light and periodical blurriness in both eyes with pressure behind and actual pain behind them that makes me not want to move my eyes)
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Shooting hot pains from neck to inside head
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Numbness of limbs at night (so much so that I have to shake my arms or legs “alive” again, I’ve actually lost all feeling below waist on 2 occasions through my life for periods up to 10 minutes)
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Stomach constanly distending
I feel like I am actually going insane, because the only person who appears to agree with me on what is going on is me. I also feel that because I have hidden everything for so long now that nobody is willing to believe that I might have something neurological going on - because I have left it for so long after my inital O.N diagnosis. I was also so frightened back then that I refused to log it in my medical history that I lost my hearing in the same ear at that same time. I feel like I am going to suffer the rest of my life with this and that nothing is going to be done about. The worst thing, I feel it’s totally my fault that I am at this loss right now in my life.
I am going for MRI but I guess what I am feeling is now a hopelessness that nothing “suspicious” will be found and I will be left to deal with this on my own for the rest of my life. I’m literally so hopeless with no progress and basiclly not being believed that I’m thinking even if something shows on MRI it will be just shrugged off as a minor inconvenience with no true negative impact on my life and I will just have to suck this up. I cant actually believe how minor and of no concern my situations seems to mean to the neurologist. I also especially feel that because I even have “Severe Anxiety” in my medical history that bar injury or blood borne disease ANY symptom at ANY time from this day forward will be declared as just being in my head.
Any supporting thoughts/ suggestions/ questions welcome.
Hi just a few questions please. About 3 years ago I went to see a neurologist with some symptoms I had been experiencing, mainly some areas of tingling and numbness mostly on my left side. Also some heaviness in my lower left leg and arm.I had a MRI and nothing showed up. symptoms were put down to anxiety although the letter sent to the GP did acknowledge that I was having some nerve problems what were obviously causing me some distressing symptoms. I was eventually given Amitriptyline as there was a possibility it could be some sort of migraine, although never had a typical migraine in my life. The numbness and tingling, particularly bad this time down the left side of my face, have continued. About 3 weeks ago I started to feel pretty bad with the heaviness in my limbs and the altered sensation on my face started soon after, I had the usual pains in my eyes, almost as if I were being stabbed in them, again mostly on the left and I did say to my husband that I thought I needed my eyes checking as my vision was dull and quite dark but no loss of sight or anything like that. The overwhelming tiredness was what was really different and noticeable, in from work, eat my tea if I felt hungry enough and then bed, sleeping for 10/11 hours but not refreshed in the morning. I find my words come out a bit strange but I put that down to probably not really listening to the conversation because Im just so exhausted. I appear to have come out the other side of it again now, only thing I have is a twitching eye but the altered sensation has come back to normal and I’m not as tired. I have kind of learnt to live with a lot of hese symptoms but feel the last episode was by far the worse that I have had. Like many the thought of going through all the appointments and tests is very off putting. What I’m really asking I suppose is do these symptoms fit in with the MS remit and should I go along to an appointment that I made to see my GP (not until the 16/11) now that I feel better, Ive decided that the Amitriptyline are a waste of time so I’m slowly reducing those. Just out of interest I also have an underactive thyroid and low Vit D3. Thanks
Mollymoo11 If your condition is back to normal and you have no noticeable disabilities then it seems very unlikely have RRMS. I am no expert however but your lack of Vit D3 maybe responsible for some of your problems. I have RRMS and apart from medication to slow it down I also take a Vitamin D supplement long term. Regards
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, it’s my first post. Three weeks ago I had awful pins and needles in both feet and hands and during the night had them all down my right side. Plus I had tingling/twitching in my cheek one side and above my eye the other side. They were painfully strong and lasted 10 days. This led me to look up my symptoms which suggested MS could be a cause. This year I was diagnosed with trigeminal neuralgia (and a benign brain tumour). This is more prevalent in MS patients, apparently. Looking back I realise that I have suffered with crushing chest pain, several times. No cause identified. Full body pain. Had sudden hearing loss, suspected virus, it cleared up with steroids. Have problems with my bladder, interstitial cystitis. Plus bowels. Have loads of cramp and more recently awful leg and hand spasms. Had eye problems and pains. Had investigations for dizziness. Swallowing difficulties. Chronic fatigue. Numb leg. Memory problems. Heavy, lead-like legs. Voice problems. Electric shock type pains in my back, radiating to my arms and legs, three times. Tinnitus. Thinking problems, pauses, can’t think straight, remember words. Vibrating ear drum. Tremor in my hands. The only thing I don’t have is drop foot. Most of my symptoms have been investigated and no causes found. I have complex regional pain syndrome, fibromyalgia and other conditions. I had an MRI on my brain in January which showed the trigeminal neuralgia but nothing else. Last year I had a spinal MRI which showed some narrowing of the formina but nothing else. I have been referred to a neurologist for help with medication for my TN. The doctor will also let them know that I have all these symptoms, which I think could be MS, although my doctor doesn’t think so because of no lesions showing up. The doctor thinks these problems would be classed as suspected MS if it weren’t for my other conditions. I have been having symptoms since my early 20s and I am now 61. I wonder if I will ever get to the bottom of all of this? The scariest things have been the crushing chest/back pains (ECGs normal) and the electric shock pains in my back/arms and legs. Does anyone else think it might be MS? I have permanent pins and needles in my hands and feet now. Thanks for reading all of this post. Pain-free days to you all. X
No Anonymous it does not sound like MS if you have no lesions and as MRI now seems to be the chosen tool to diagnose it. Your symptoms may be due to the Fibromyalgia you talked about. You did not mention if you are on medication. Vitamin D supplement may also be of help. Regards
Hi all, I still think my symptoms could be MS so I will wait until I get my appointment with a neurologist and maybe have another MRI and/or a lumbar puncture, however painful that might be!
Could anyone tell me what their worst symptom is please?
Kind regards,
Ang (my first post was sent as anonymous - accidentally)
Hi Bracknagh, thanks for your reply. I am not taking any medication. I could not get on with Carbamazepine, Baclofen or lyrica, they all affected me badly. My doctor would not give me anything else as she said that the neurologist would be able to help with that. I take a multivitamin/mineral, nothing else!
I find it difficult to make my way around this site and I keep finding myself on old posts, is there an easier way to find the latest posts?
Kind regards, Ang (previously anonymous)
Hi just googling my odd symptoms that have been getting worse for the last six months and are a repeat of what happened for about a year 25 years about!
waiting toe see a Neurologist in March, (have been on the waiting list for 4 myths.)
25 years ago had left sided tingling, pain, numbness which left me unable to work consistently for a year, weak tired etc but symptoms gradually receded.
this time round started with unexplained pain in left side under left rib cage and through to shoulder blade. Numbness pain up into jaw down left hand etc. Rushed into hospital with suspected heart issues but these been ruled out.
left with threat pain which never really goes away but also tingling numbness that floats around hands face left leg, itch buttocks and today for no reason very shaky hands for half an hour. Suddenly get very tired like someone had pulled a plug and energy drained out. Sometimes pain so bad have to sit up in bed. Like migraine in left chest area which seems to radiate out to all left side and usually noth hands. Sometimes walking now having pain in left groin area and then sometimes both big toes!
Some thoughts have been shingles in left side chest?
pain in chest feels like tight band along with the odd sensations? Every time I google symptoms I see a lot like MS symptoms, not worried about what the diagnosis is just want to know how best to work around health! Not having a diagnosis and knowing body is a bit off is frustrating as been a very very active 60 year old and over the last year having to rest regulars throughout the day!
Any thoughts.
thanks
Hi All
Please could I ask for your help in what to say to a private neurologist on 29th November. I am undiagnosed and only realised that this could be MS after 3 years of being treated for 6-7 separate symptoms.
I have numbness &tingling on my left side right up to my buttocks.I have numbness in my right foot. Had this years. I have tingling and numbness in my hands. I have vertigo. Incontinent unless I take medication, constipation, I have muscle pain and cramps. I was diagnosed with fibromyalgia in 2016. I have anxiety and depression which I take antidepressants. I have the concentration of Dory in ‘Finding Nemo’. I am 48 years old. I feel so ill and I am struggling to keep my job in HR as I am off sick a lot. I work in the NHS! I put my symptoms into a symptom tracker on the web last week and MS came out as the top diagnosis. Hence I have booked for a quick private appointment.
I am scared yet want to know what’s wrong with me. Please can someone give me some advise for when I see the neurologist.
thank you in advance.
Hello and welcome to the new posters.
Can I suggest that you start a New Thread (see the button above the list of existing threads)? You’ll get more answers that way, it’s very easy to miss posts tacked on to the end of an old thread.
Dstanding - March next year sounds like a very long way off. If you are really suffering, try seeing your GP and asking if they will change their referral to an ‘urgent referral’. That way you might get a slightly quicker appointment. One problem with MS is that so many symptoms are shared with other diagnoses, so it’s impossible for anyone besides a neurologist to say how likely MS is.
PDiddy1 - preparing for a first neurology appointment is mostly a case of writing yourself a timeline - what happened when, whether symptoms improved and whether anything has stayed with you. Also write down any questions you have. Don’t be afraid to get your list out. You want to make the most of this appointment especially if you’re paying for it. It’s a good idea to take someone with you to the appointment, sometimes ones brain turns to mush and remembering what’s said has dissipated like mist as you leave the room. If the neurologist wants to run tests, ask if you can be referred back to the NHS for them because that’s the most expensive bit, hopefully the neuro you see will have their own NHS practice.
Good luck to you both.
Sue
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