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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?

Hi, welcome to the forum

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

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I am new to this site, what is DVLA. Thanks

Hi Anastasia, welcome to the forum. DVLA stands for Drivers & Vehicle Licencing Authority

Rosina x

Hi Rosina, thank you for the welcome. I took another turn in work two days ago where i lost the ability to use my right leg properly, walking with a peg leg is the most accurate description. Bit the bullet and paid private to see a neuro today who clinically says it is an inflammatory attack on my nervous system. Has recommended me to his colleague that specialises in MS. Since my last post i’ve started getting a tingling sensation in face which started on the right side but has moved across my whole face. When i get it i can’t speak as the words come out like i am drunk. Still not had a scan yet as i somewhere in the nhs system and will cost a fortune to get it done privately. Only other thing i’ve noticed over the last few days is a weakness in my right side and it being a lot more difficult/requiring more effort to use my right hand. I’m getting fed up listing the same symptoms to docs as they vary from looking at me like i am “at it” to seeming really concerned but the pace of getting properly tested is really slow. Beginning to lose my paitence with them considering i’ve had to tell my family and work of this process who are obviously concerned and asking for updates all the time.

Sadly, these things do take time mcp88, you just have to be patient…unless you could pay privately? Ask your family/work mates not to keep asking for updates, you’ll tell them when you know more!

Good luck

Rosina x

Hi MCP88,

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.

Rosina, i am self funding it. This is my first year not having private medical care through my work. The neurologist i spoke to says that clinically it looks like MS, says he can see a scan has been booked for me so doesn’t recommend that i pay for it yet untill i’ve spoke to his colleague on Tuesday who is a specialist in the disease and knows all the treatments for it. Kirsty, thanks for your reply. After Tuesday I’ll need to start chasing this more as its really beginning to be annoying all this guesswork and I think the not knowing is making things worse. I pretty much failed all the neurological tests they did that required any sort of balance or coordination. Strength in my right side was worse than left. It was weird actually having a doc say outright what it looks like as the rest have been quite vague about what it could be. It might just all be stress related and all in my head but who knows. At any point did you feel like you were going a bit crazy?

Yes I did. I kept telling myself to just pull myself together and get on with it but then couldn’t physically!

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.

Hi mcp88 and welcome,

This is the best account I’ve seen about MS diagnosis; Diagnosing Multiple Sclerosis 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

Thanks George, the article was really informative and easy to understand.

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

Thanks George. This has helped me understand what the neuro meant by clinically he thinks I have it.

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!

Kirsty my darlin,

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

Hi mcp88 - how are things?

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?

Hi Kirsty. Things are pretty rubbish the now. I see why its been described as limbo, signed off work and not allowed to drive till I get this MRI which is on Thursday. Had problems with my hand over the weekend, could hardly lift anything wìth any weight in it - but seems to be getting better.

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!!!

Doc got results of my MRI yesterday which showed abnormalties consistent with MS, he has made a confirmed diagnosis. My questions were limited to will this limit my life span and will i be able to play football again (only two i could formulate in my head - priorites eh). Going forward a MS nurse will be in contact to start my treatment. Kirsty looks like i am a few weeks behind you in terms of progress. Were the DVLA easy enough to get everything sorted with? Is there anything else i should be doing in meantime?

Hi, sorry I’ve not replied but the cold turned into a chest infection. Grrr!!

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

Oh dear hope the infection clears up soon. Its the last thing you need. Most people have been ok, got a lot of support behind me so I’ll cope. Dad is taking it quite hard but I think its because he works overseas and knowledge of MS is limited. My work have been ok so far but don’t think I’ll be going back till we see how I respond to treatmemts as stress and fatigue is probably not what I need right now. My only worry is that I’ve not been symptom free for a number of months now. When something goes away it is replaced with something else. I am worried it may be progressive but we will see. Do you know if your GP can start giving you medication for symptoms or does it need to be the MS nurse? I’ve no idea when I’ll get an appointmemt and I feel enough time has been wasted to this point. I just want to get better and be active again.

I don’t know if the GP can give medication or if it’s the nurse - that’s one of my questions for Tuesday. I’m also asking what do I do when I have a relapse - do I see the GP/nurse/neuro? Will my legs always hurt now? Can I take any meds yet or do I need to see neuro again first?

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!

It’s been helpful to read these posts as I’m due to meet the neuro-opthalmologist tomorrow (my symptoms have been all vision issues with 5 lesions on MRI). I think they are not confirming MS yet for technical reasons but I’m fairly sure this is what it is. Good luck both with your appointments!