Hello around 2010 i was diagnosed with Carpal Tunnel Syndrome in both arms/hands had nerve induction test and had a brain scan and other movement tests.. But this still didn’t explain tingling in my foot and leg and what felt like a tremore but it was internal that was in my leg and chest and more notyceable when lying down..Doctors put it down to anxiety as around that time i was diagnosed with Wolf Parkinson White a heart condition fir which i had an ablation,took a couple of years to diagnose so there was lots of anxiety that came with it,..Every since that point nothing has changed,the symptoms in leg and chest remain they have git worse they are now 24/7,if there is a cold or virus going round i pick it up and am ill fir weks/months..Last year they found i have iron deficiency,very trange consudering my diet,also after 12 months of continuous problems with urinating prostatitus diagnosed..So many on going conditions,i also had Pneumonia about 10 years ago i have absolutely no immune system..Recently picked up a virus that was over 10 weeks ago,antibiotics several times that has gone but since the tingling in foot and arm has spred upwards and as said there 24/7…I can;t sleep,the tremor that i feel is so intense it just wakes me up,am totally exhausted falling asleep in the day..I was doing alks in the Summer 5/6 mile,but now i’m to tired to even leave the house,i have intense itching my deoression is very bad have been on anti depressants since the heart condition plus valium and sleeping pills..I also have pain in the neck and chest,had the chest pain fir at least 10 years originally told muscular,for 10 years it must be some sirt of nerve pain..When i turn my head to the left my head shakes and is painful,mot of these things i’ve seen Doctir about,i think they put some down to anxiety,which they definitely aren’t plus the neck pain postural,i’ve had it fir 12 months it’s getting worse..So only this week i just googled MS,and evetything just falls in line nearly evey symptom i know no one can say yes you have it but foir the legth of time ive had them and getting worse i just can’t believe it’s coincudence.
Getting an appointment is a feat in itself,the last time i tryed to get an apointment it took a month you have to apply online nothing over the phone..I just need help on how to explain symptoms without all the rambling and obvious anxiety i’m showin on this post..Bearing in mind,they literally give you a tiny space to explain your symptoms..if i had to bet on this beung MS i wpuld say its a definite,there are just too many symptoms that match to be coincidence..The trouble is gettig doctors to look beyond anxiety and taking this seriously,i’ve out up wit these symptoms for 15 years,nothings changed they’ve ryed to be explained awat ad ive just accepted them till the last month where now i’m quite scared as everythngs escalating out of control especially the depression and tiredness..If anyine has any advice on how to express this to docturs surgery would be a grat help..
It can be a bit of a battle to get through to a GP.
When you’ve had a mix of symptoms over a period of time, I think it can be hard to know where to start when they finally sit you down.
Have you thought of trying to write it down? You could try to get it in some sort of order. For example, you might have a list of symptoms and approximately how long you’ve had each one. Or just a list of things in the order they happened. That way, you a bit more control when you get into the room. Sometimes I’ve pretty much handed over my written list of symptoms to the doctor!
Another idea: It might be worth saying to your GP, “I think I might have MS”. If they agree, they will refer you to a neurologist. But if they say, “I don’t think so”, you can ask, “Why not?”. You’ve obviously looked online, as do most patients. So it’s perfectly reasonable to ask. But the GP may also be aware of other conditions that we don’t know about and that don’t show up on Google.
It was a bit of a ramble,if you notice lots of wrong keys hit as well which i’ve only seen over the last couple of years,i put it down to tiredness but it happens noweverytime i post something online..
There are other things i missed off,my daily walks in the Summer i was tripping over caused by my left foot this was happening every other walk..I also fell down the stairs early in the year and i’m regularly breaking cups and bowls,it was becoming a running joke as it’s so often..It’s only been the last two weeks all these things are now clicking into place..15 years ago i suspected it but just accepted the diagnosis and over the years things have git worse and worse and as most people you just put them off as trapped nerve,age etc etc..This morning was even worse the tingling had spread to my thighs and an intense burning in my shoulder,never had that symptom before..
I contacted my Doctors today,got a message on my phone telling me to get blood test urgently and an appointment will be booked,so at least i can get that done..
Sometimes i think when you go in with a huge list of symptoms they think you are exaggerating,don’t really see how my dictor could rule out MS there could be other causes but to rule it out would be impossible..I’ve already said in the appointment i ased for that i thought it could be something neurological..i didn’t mention before but my daughter is in her first year as a hospital doctor..
Thanks again for the reply Leonora,hopefully i just get referred without having to keep going back..
Have tried to book an appointment,doctor told me to get urgent bloodtests last wednesday,then on Friday i phoned for an appointment date..They said they would be in contact,then today offered me one appointment with a medical student..Normally i wouldv’e said yes i have never said no but with so many symptoms and issus it would be a waste of an appointment,so i asked fir another..They said December 2nd,i have been using this practise since i was about 5 and i’ve never known you having to wait this long,it’s absolutely ridiculous..At the moment i’m sitting up till 4-5am i have this internal tremor which is now 24/7 my left ear has a constant squealing in it ins and needles throughout my left handside..I’m so depressed and just breaking diwn all the time just cannot get to sleep with the trenmor ad ear rininging,feel like i’m going insane..Then i’m in bed till midday maybe getting 2/3 hours sleep,then totally exhausted and then falling asleep down stairs for an hour,the internal tremor never goes and the cyle repeats and i can’t even get a doctrs appointment..I said i can’t wait till 2nd December they are phoning back tomorrow,even if i get an appointmet how am i going to deal with these symptoms even if i get a referral..Totally lost..
It sounds like you are really struggling. I hope you manage to get an appointment soon.
I wonder if it would be worth accepting an appointment with a medical student, as they will have a qualified GP that they can talk to and get advice from about how to support you best.
Hi there they gave me an appointment yesterday,but with a healthcare assistant on monday so even after listing all my symptoms on the triage they’ve handed me over to someone who won’t even be qualified to probably refer me to anyone..I wish i hadn’t mentioned mental health problems as helath care assistent maybe just means mental health nurse..My daughters a forst year doctor and she said to me tonight that’s probably what they’ve done and the appointment will probably be a waste of time..You’re probably right maybe i shouldve taken the original appointment,stupidly i’ve ignored these symptoms for 10 maybe 15 years but they started escalating 2 months ago.Doctirs have said nothing previously when i’ve mentioned pins and needles numbness and the internal tremor..But these things have now become 24/7 and not subsiding with lots of other symptoms..
Hope all is going well. I know all of this is super frustrating and you probably just feel completely misunderstood by the GP, I’ve recently been diagnosed 2 months ago - it was a battle to say the least.
The past 2 years I showed signs and symptoms but just really never gave it much though, that is of course it started interrupting my daily living. GP diagnosed me with labyrinthitis but I still was struggle with symptoms ‘was given antibiotics’. I said I was still struggling and then they said it was sciatica and gave me medicine for that.
I felt so disappointed and drained so I just took myself to A&E and explained my problems with my vision, my walking, the numbness, swallowing food and water. They then kept me in hospital and had an MRI and lumbar puncture. MRI showed the demyelination and lumbar puncture ruled out other problems. Sometimes you really have to advocate for yourself and push and get people to listen to what you are going through.
You can go through the GP but often times it takes ages and if your problems are seriously disruptive, maybe A+E would be best for quick and responsive solutions.
Usually to meet the diagnostic criteria for multiple sclerosis you have to have finding of sclerotic plaques in the brain consistent with MS, other autoimmune diseases that could cause sclerotic plaques have been ruled out, lesions and episodes disseminated in time and space.
No neurologist is going to diagnose you with multiple sclerosis without ruling out other autoimmune diseases, confirming dissemination in time and space with MRI imaging, specifically with and without gadolinium enhancement, and usually (not always) they require a secondary confirmation of oligoclonal bands or other multiple sclerosis related proteins found in the cerebrospinal fluid. A lumbar puncture is not necessarily required but usually performed.
I didn’t need a CSF puncture because I had so many lesions in my brain. It looked like it was completely engulfed with fungal mycelium on the MRI when I was diagnosed after optic neuritis presenting as loss of red saturation.
In other words, you’re not going to be diagnosed based on symptoms alone without confirmatory Imaging and laboratory testing to rule out other diseases.
I gOt a referral to neurology then today recieved a text message saying that it has been sent back because i don’t have enough neurological symptoms..I have had many medical problems the last 20 years but i’ve never had a referral sent back and refused,the whole thing is a disgrace..When i saw the Dr i was suspicious as the previous week they wanted me to se a trainee doctor,i said no as i wanted someone experienced..I turned up fir the appointment and write down a lis probably 15 different symptoms,and the Dr kept leaving the room to ask other doctors points i was bringing up..This doctor was obviously the one they wanted me to see the previous week,am just so fed up of this situation..depressed and am so angry i don’t even want to contact the practise to discuss it as they said in the text..
It seems from the text like they are going on my previous diagnosis of carpal tunnel which must be a decade ago,exactky what symptoms am i supposed to show disability and unable to walk..The whole thing has made no sense,i’ve watched neurologists videos and symptoms and i have alot of them,i’ve now also developed a pain at the bottom of my spine which is sometimes so excruciating i can’t even stand or walk but then it will just disappear for days..Absolutely exhausted because of this internal tremor and squealing in my left ear which has now become permanent 24/7..viral like symptoms coughing and sweating but no temp headaches every single day since September..And i can’t even get a referral,i’m aware it could be something else but why refer me if they had alternative diagnosis and get some more tests done..
Hi there Kalerik as i have just replied to Rahma,my referral has come back spparently not enough neurologocal symptoms,they see to be inferring the symptoms are the same as i had over 10 years ago with carpal tunnel..What am i supposed to do,wait till i’m disabed,unable to walk,eat pee mysekf the whole thing is ridiculous..You are right yes why are no other autoimmune diseases not being ruled out..more testing advised,i’m so angry i just can’t contact the surgery..I;’ in spiralling depression because of thos,mainly due to lack of sleep and now this knock back on a referral from neurology when i haven’y seen one in at least 10 years it might even be 15 unsure of dates..At that time i had one brain scan,i’ve recently read that 10 or 15 years ago the imaging and diagnosis was far harder to observe,yet they came back wit this ridiculous message..Imagine if consultants applied this to all sorts of diseases,you’re not showing enough symptoms,i literally have between 10-15 symptoms and i can’t even get to speak to anyone..
I need advice. I’ve all the symptoms of Ms and seen a neurologist where I failed neurological physical test. Rhombergs test. Broad gait. Clonus in ankles. Increased tone in legs. Brisk reflexes. Neurologist suggested Ms. MRI brain and spine came back normal. Vep ssep tests normal. Bloods all normal. Lyme disease negative. I’ve tingling, numbness, poor balance poor grip, heavy fatigue, dead heavy legs all the time like cement blocks. I’m so confused my tests came back normal. Anyone else go through this I can’t go on with these symptoms and they are worsening
