Need some advice
Hello, new to this forum but looking for some advice. Basically about this time last year I experienced numbness in my toes and fingertips. It went away after a month and I ruled it out as the cold/poor circulation. About November last year I started getting very dizzy all the time, saw the gp who thought i had labrythitus which I was happy to go along with. The worst of it subsided after a few weeks but my balance and coordination is still - its like being constantly drunk. The numbness has also returned along with a weird tingling on the left side of my face. My eyesight is also affected and basically its very hard to focus on things in the distance. I've also noticed increased trips to the toilet and being tired all the time, no matter how much sleep I get.
The gp has tested my blood twice amd came back fine both times, blood sugars, b12 etc. I have been referred to a neurologist as everything seems to point to MS. I do have a stressful job so hoping it might be down to that but can't excerise without getting dizzy and after any exertion I basically feel like my brain is in a cloud.
Did anyone else experience similar symptoms prior to diagnosis or is anyone got these right now and how far along in the medical process are you?
The gp has tested my blood twice amd came back fine both times, blood sugars, b12 etc. I have been referred to a neurologist as everything seems to point to MS. I do have a stressful job so hoping it might be down to that but can't excerise without getting dizzy and after any exertion I basically feel like my brain is in a cloud.
Did anyone else experience similar symptoms prior to diagnosis or is anyone got these right now and how far along in the medical process are you?
The symptoms you describe might point to MS but they could also point to many other things. You've been referred to a neurologist & hopefully you won't have too long to wait. A neuro is the only person that might be able to give you a diagnosis, they'd need the results of a lot of tests you'll probably be asked to have.
MS is notoriously difficult to diagnose so be prepared for a long path ahead. It's a good idea to make a note of your symptoms so that when you see the neuro, you're able to be clear. Write down any questions that you want to ask, neuro appointments are never long enough so try to make good use of the time.
You say you have a stressful job but try not to become too stressed, it could make your symptoms worse.
Good luck, keep chatting on here, everyone understands how you're feeling
Rosina x
Rosina x
Good luck
Rosina x
I am new to the forum as I was diagnosed with MS this week.
I had/have very similar symptoms to you.
A year ago I began with numbness and tingling in my left arm and face and a word finding difficulty, I went to A&E as it came on suddenly after a stressful week and I was advised it was stress or a migraine. These symptoms went after 3/4 days.
Since then I have had numbness and dizziness on and off but put it down to tiredness, pulled muscle, stress etc etc.
Last week I had the numbness in my face and then developed and overwhelming dizziness and vertigo so bad I was unable to leave the house alone. My doctor at first diagnosed labyrinthitis and sent me home. When it got worse not better and I could barely walk unaided due to loss of balance with my legs feeling totally detached from my body, I was referred to the local hospital acute medical unit where I had a CT scan.
This showed some abnormalities, and I then had an MRI from which I was diagnosed this week.
All this took place very quickly, from labyrinthitis to MS in 7 days - impressive!
I'm still walking with a 'wobble', my legs don't talk to my brain anymore, and I have been off work for 2 weeks now.
I can only empathise and sympathise with you but I would suggest you maybe politely start to chase your mri appointment with the neuro's secretary? I did ring the hospital admin a few times to chase up appointments, as long as you are respectful and good mannered they won't mind your enquiries.
My diagnosis happened so fast I don't know what happens next. I am waiting for an MS nurse to contact me and for my neurologist to send me an appointment.
But what now? Do I just carry on and wait for the next time?
On the plus side my symptoms have almost gone and I managed a lovely walk with the dog today without the fear I'd fall over.
Keep strong, keep positive.
This is the best account I’ve seen about MS diagnosis; http://www.mult-sclerosis.org/diagnosingms.html it’s written by a doctor; they also get it.
Kirsty’s diagnosis was impressive in the time it took; there must have been some markers that made it 95% undisputable adhering to the McDonald criteria http://www.ms-uk.org/MSdiagnosis
Generally Rosina is right it does take time.
George
I appreciate the speed of my diagnosis was unusual for which I am thankful.
I did have full bloods, neurological exam and my MRI fitted the McDonald objectives with 1 attack, 2 or more lesions disseminating in time.
I am being investigated further though with a possible lumbar puncture.
Kirsty
If you have a definite diagnosis there is absolutely no requirement for an LP. It would only be for your consultant to confirm matters in his mind; but what if he does not get a positive eg show bands which sometimes do happen?
George
Kirsty it's scary to know that even with a confirmed case there is still a lot of waiting around.
Gp signed me off work as there is a question mark over my ability to drive. Will try get this sorted as I hate feeling like I am housebound.
I was walking the dog today in the park and had leg issues again. I don't think the uneven ground helped!
I was finally getting over this relapse when boom I get hit with a nasty cold - I can walk straight but i can't breathe now!
However,I have a date to meet my MS nurse and I've joined the local ms society and I start a phased return to work after the Easter hols (I'm a teacher)
How are you getting on?
Scared to leave the house myself incase I get stranded somewhere and my foot goes again. Might come across a set of stairs without a handrail!
Its annoying not knowing exactly whats wrong with me - people keep asking and when I list the things that could potentially be causing this as soon as I mention MS its like ive told them I'm terminaĺly ill.
Do you ever get your balance and coordination back? I swear mine has not been right since November!
Good to hear you are doing well - cold aside!!!
My symptoms have totally disappeared except for the fact that I get very achy legs when I've been on my feet a while. The fatigue is not too bad but noticeable - however I've been knackered for so many years now it's just the norm!
Glad you now have your answers, I too was faced with intakes of breath and sympathetic looks when I explained I had MS to friends and to work but after I explained it all and gave them info from the MS society things got better. I downloaded a form from the Dvla and returned it to them, they are contacting my neuro but I don't expect that I'll have my licence revoked as I am more than capable of driving when in remittance.
My biggest bug bear at the moment is that because I am mobile, going back to work, walking the dog etc my friends. Seem to have forgotten that I am unable to do as much without getting fatigued. When I say I'm tired they do that 'oh I know how you feel.....'
I just just want to shout ' no you don't!!!'
you do seem to be a couple of weeks behind me!
I have an MS nurse apt on Tuesday so I'll try and pass on so e info to you.
Kirsty
Have you tried getting in touch with your local branch of MS society? I found mine really helpful, I access the hydropool for free with the group every Wednesday which I have found a works brilliantly relieving my symptoms. Plus I get to chat with other MS sufferers who have lots of knowledge and experience to share.
It must be really frustrating for you not having any remittance between symptoms - try and stay positive.
I rang the MS nurse myself as I got fed up waiting!
Kirsty, I have emailed the ms society branch here for guidance but the contact is on annual leave till the 20th. Thats what you get for being diagnosed right in the middle of the easter break :p I'll need to phone my gp for guidance.
Thinking about investing in a "I'm not drunk, I have MS" t-shirt. Might be more effective than any meds they can give me right now.