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Hi, saw Neuro for first time todayHi

Hiya, I’m pretty new to this site, have only posted once before.

Basically my story is this …

Have been having symptoms since January, started with feeling faint, dizzy, then started with tremor in left hand (mainly thumb) my legs would also shake quite badly, especially when first standing up, have often had to go round the house on my hands and knees.Legs very weak but heavy, found it quite difficult to place them, was like walking on sponge, my spatial awareness is pretty rubbish, I often walk into doors & can’t seem to lift my foot high enough if I need to step over something. I’ve had to start walking with a crutch as I feel more secure this way.

I have also had problems with my vision being blurry, seeing floaty things & its often like I’m in a fog, where all my vision is foggy. My tongue feels too big for my mouth quite a lot & I think my speech is slurred. I get a weird burning pain in my feet/legs which comes and goes. I also have a weird thing with my head where I feel like a nodding dog, get a weird creeping feeling as well as if something is crawling over my skin?

I’ve probably missed lots off there but you get the idea, lol

Anyway been under ENT, recently had balance tests which have revealed that my right ear balance mechanism is working at 37% less than my left which is causing my dizziness & have been diagnosed with Meniere’s Disease.

Today I saw the Neurologist for the first time & he seemed to think that all my symptoms point towards MS, he has ordered an open MRI as I’ve tried the normal one on several occasions now with no luck as I suffer with claustrophobia.

I suffer with anxiety & panic attacks, have done for 7yrs + now and I’m on Fluoxetine for this, also on qvar for my Asthma.

Just really wanted to know if I get a confirmed diagnosis what is the next step, what do I expect, what’s going to happen to me ?? I don’t know much about MS admittedly, I try and read up but I think it goes straight over my head and just doesn’t sink in at all but then if it isn’t confirmed what on earth is wrong with me ??

Hope this all makes sense, I’m just so confused really, my mum asked me how I felt about it but to be honest I really don’t know ?

Hi

The road to diagnosis can often be a long a scary one. I would agree that many of your symptoms sound like MS (I recognize a few of my own) but they could just as well sound like other things too, so who knows at this stage.
I understand completely what you are saying about things going over your head. There is a lot of information out there but you don’t yet know which is pertinent to you so it might be as well to wait a while before you go on a fact finding mission.

What will happen next depends entirely on your post code and the services in your area. If you have MS Nurses you will be assigned one of these. There are different types of MS. If you have one of the types that can be helped with medication you may well be put on these (They are known a DMD –disease modifying drugs) If you have a progressive form of MS (Like me) there are no drugs or treatments at the moment so you will probably be packed off for 6-12 months back to your GP. As to what will happen to you as regards your MS – that is a question no one can answer. Even if you have Primary Progressive MS it could be years and years before you see any changes.

The best advice I can give – and you will hear it MANY times. Is to just take each day as it comes. If you have a particular problem at the time, read up, post here and find ways to cope. If you are having a good spell – enjoy it and don’t waste time worrying about what might be round the corner.

Good Luck

Jane