Forum

In panic mode right now

Hi I’m new here!

No diagnosed as of yet but I’m bracing myself for the neuro to tell me I have ms!

i currently have a very worrying symptom and I’m scared! I’m actually losing my mind.

Mohave gone numb from the waist down. I can still feel things but I feel numb and tingly. My legs and bum don’t feel like they belong to me.

Ive had lots of symptoms over the last 7 years including two bouts of optic neuritis. Numbness in arms, legs. Lhermitte’s sign is always present before a flare up. I was hospitalised last year with labrynthitis and had lots of MRI scans done. The MRI showed lesions. I was discharged from hospital and had a VEP test done. I was never given the results to this test!

I saw my GP two days ago when Just my leg was numb but now it’s spread and I’m scared! I am awaiting an appointment with a neurologist but that could take months.

What do I do? Go back to the GP? A&E because I am numb? I just don’t know what to do anymore. I’m a single mum of three and I’m struggling right now. I’m extremely fatigued and I just want some answers.tha is for reading.

Hi Beccaboo

I’m not surprised you’re in a bit of a state. It must be very worrying to have this happen to you. I’m surprised that you’ve not had any proper feedback from the hospital about your previous symptoms and MRIs etc.

So, if I read your post right, your GP has referred you to a neurologist. I can’t see that A&E would necessarily find numbness to be an emergency, unless it’s disabling. If it’s sensory, (i.e. what you, can or can’t feel) rather than motor (what you can or can’t do), then they could get a neurological consultant to see you, but they might not. So if you find you can’t walk or are in terrible pain, then definitely go to A&E. Otherwise, you might find you face a long wait but with nit much of a result at the end of it.

Meanwhile, perhaps you could find out how long the waiting list for neurology is. If your GP has only just made the referral, you won’t be in the system yet, so probably won’t be able to find out how long you will have to wait. But you could ring the hospitals appointments team and ask for a rough estimate of waiting times. Once you are in their system, you’ll be able to see if you could be shunted up the queue at all.

Another option would be to go back to the neurologist you saw when you were tested before, phone their secretary, explain what happened before and what’s happening now, and see if you can get an appointment with that doctor as they’ll have all your notes from before.

Sue

Thankyou sue.

I saw my GP today well a different one from my surgery and he looked at my history and said I will be very surprised if you aren’t diagnosed with ms.

Hes created merry hell and spoken to the hospital to get me an urgent referral.

Should hear within two days when I will be seen.

I’m not as panicked now as I was yesterday and I’m up and about feeling so much better.

Its so much worse when you sit on the pity train isn’t it.

GP looked at my results and was shocked that I wasn’t seen last year straight away.

Fingers crossed for answers now!

Hi B, yes I can fully understand how worrying all this is for you.

Long waiting lists are an added pain.

Like Sue says, try to find out how long the waiting list is.

I know you are a single mum of 3, but is there any chance of going private for your first neuro appointment?

I did this backc in 2000, as the waiting list was 10 months long!!!

Then I went onto the NHS list.

pollsx

Crumbs - poor you. I am glad that the GP kicked up a fuss - by the sound of things, it’s about time someone did. Keep pushing, and I hope you get seen very soon. In the meantime, keep the lines open with the GP - they can be worth their weight in gold at times like these.

Alison

Hi, so sorry for you. I am new-ish too here. the NHS wait was five months so I went private, 2 weeks wait. He diagnosed and gave me an immediate course of steroids to calm it all down why I wait for the NHS. He offered me his email and phone for questions. £150. For one hour. I took a written list with dates of all of my symptoms and phoned to hospital before so that they could access hospital records. I think that my GP had to refer me, because even he couldn’t speed up the NHS waiting times and there are no neurology services in my area. Money well spent if you able to do it.

Best best wishes patience x

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Thankyou all so much for your replies. It’s a real comfort to me. I will wait for the two days and see when my doctor has managed to get me an appointment for. If it’s a long wait I will go private.

Fingers crossed I am actually listened to and diagnosed finally.

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Hi Becca,

Whatever happens this is a great place to let off steam. It doesn’t matter what you are going through there will be someone here who has had the same experience.

I think that, collectively, this Forum has more experience than any neurologist and you’ll find us a lot more empathetic and friendly.

Anthony

Thankyou Anthony.

I feel comforted by you all already. The first thing I am drumming into my head is I am still me!

Even with diagnosis looming. I am sure I will be on here a lot it’s great to speak to people who don’t think this is just anxiety and the stresses of having 3 children. I am still very nervous but I guess that’s part and parcel of this horrible disease.

I’ve got lots of words for your neurologist Anon, but none of which are particularly nice. Just remember, just because they have the qualifications & years of study, it doesn’t make them experts. People with MS are the experts, including yourself, so unless they actually have this s****y affliction, they can’t know it’s mechanics really can they? we are not text book cases. Personally I think he/she should have lessons in patient care, & stop being so bloody condescending!!! Sure the MS society are going to be very pleased that their intensive fund raising, support & dedication to their members is being so well regarded by some educated div who is basically an arse.

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I just started replying to this post. More diplomatically, but also much less honestly. Then I bored myself too much to carry on so deleted it. Saw your post. You are so right.

Sue

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Scares me these are the professionals looking after us, hopefully not a wide spread opinion, very overpaid tit that 1.

Wow! That’s awful!

Im not even diagnosed yet and I feel so much better after finding you all!

Your neuro is an ass!

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Sorry still getting used to this page and how the comments work didn’t realise you could reply specifically to one single person.

Back in the days when I ‘had’ MS, I delayed going on this forum as I was scared what I might read!

That can be so, but at least members here do know how it feels to have MS.

I believe it is better to ask those in the know who have dealt with problems, as the neuros can’t do that.

Pollsx

Never apologise B, you’ll be a dab hand at it soon! xx

See, we’re already becoming friends. The MSS fora are friendly places where we can try to help each other. And be honest with each other. (Sometimes disagree, but usually in quite a pleasant way!)

Sue

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The link by Scudger on his undiagnosed post has a section on the being undiagnosed and reading things on line and comparing yourself and important things to remember if you are going to do so. Quite interesting.

Honestly Thankyou to each and every one of you.

You are brightening my days already.

I look forward to getting to know you all already and making new friends.

beccaboo

it’s wonderful to make good friends with people who know exactly what you are going through.

i’m off to the ms therapy centre later - another gradely bunch.

i also meet up occasionally with a facebook group called ladies with lesions.

if you want to do the same just ask who lives near to your venue of choice, luckily mine is close to the M61 and so about 20 of us meet although often much fewer due to the nature of the beast.

a local group called bolton neuro voices as well.

you are all what i consider my “tribe”.

you’ll be alright. in a year you’ll wonder what you got so worked up about.

carole x