Im back!! and hears an update!!

New diagnosis and before diagnosis
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Hay guys and girls,

For those that have not seen my posts previously hears an update.

Heel stopped working, Numbness pins n needles so sharp I think im standing on something spread up to my leg, Then my other leg stopped working = admitted to hospital.

In hospital 2 MRI and 1 LP (I would not wish this on anyone however if you have someone that knows what they are doing I am sure it will be fine, I had a trainy that said they wernt and they had done it loads when they haddnt)

I couldnt walk for a week, then my legs started working again and they released me (great for watching Olympics, not great for my wife who worries or me as we run our own business)

They found a legion on my Brain, they dont know what it is other than, its not solid so its not a tumor, (thats productive) My Spine MRI was blurry but viewable (yeah right, 40 minutes of laying on the most unformtable bed whilst suffering from costophoia go do one NHS) anyway I just shut my eyes and imagined nice things.

They released me I have had one relaps but put this down to trying to walk to far too quickly. Never had pain but now feel pain, my foot is sill how it was but the rest of th symptoms have dies off (for now.)

last week I have an appointment for end of septemebr for a follow but today a letter has come through for an EEG VER, can anyone help with what this does (I know sticky things on my head measure brains and looking at some spiral image thing but life experience is better than google)

I am prepaired for anything, and feel enlightened after seeing what I saw in hospital on the stroke ward for a week. I am 26 and realise living life is sometimes more important then being a work aholic, work hard play hard now work hard play harder.

I hope everyone is well and if you want to know about anything above, I have just been through and you have to or are worried about I am hear to help, also if anyone has has an EEG VER please explain do they actually know what wrong with me?

Love and peace

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Hi Tom, I had a MRI yesterday, they are not nice. So loud I coulf hardly hear the 80’s cd they played for me. Lol.

Seams you have had alot going on, this can get u down cant it? I feel fed up, and just want some answers, and to get better again.

Take care

Jan x

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Hey Tom

gosh you’ve had a trying week. Glad you’re feeling better though. As you say it xertainly teaches you to enjoy life and enujoy what you can do right now.

I’ve not had eeg or ver but know the eeg is to look at brain signals/activity and the VER can be to look at responses from your eyes/ears or even limbs. As you said it’s a heap of wires attatched to areas of your head and for the eyes they ask you to look at a screen usually checkerboard, the ears I presume is sound and the limbs is electrical stimulus. Not sure about the duration.

I think if you’ve survived the LP and MRI this will be a doddle but then I haven’t had it done so don’t quote me on that.

Best of luck hope you get some answers soon.

Reemz

X

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Hi Jan,

When I was in hospital I was down until I met a youn boy who was in a house fire a starved of oxygen, my wife brought in my guitar and he has his tamberine as he loves music, I realised regardless of what happens, There is always someone worse then you, you break an arm someone lost one,

Keep your chin up, we all want ansers when we get them could take ages,

The MRI was incredibly loud, I actually drifted in and out of sleep whilst they were doing my spine, I was so tied tho. ha ha I changed the noises it made into a song and fell asleep I am crazy,

How are you feeling today?

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Thanks Reemz, yes its been a struggle, I feel worse for my wife, she come to see me everyday for almost 8 to 1o hours, It takes it toll.

But on the plus side, they are doing things to confirm or rule out, noone has said anything apart from a lesion on my brain and inflamation. I know the EEG helps confirm MS and the VER yes is black and white images normally do one eye at a time and will last 30-40 mins not including set up. I will look like a christmas tree or hell raiser

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Hi Tom Sounds like you have been through the mill this last week . I have and the VER test done and it’s nothing to worry about Its a lot of wires attacted to your head and u sit in a dark room with a nurse who reads the responses as it test is done . You watch a checkered screen . They want to see how quickly it takes the eyes take vision to the brain. It makes your eyes feel a bit funny after that’s all . ( it’s getting the glue out your hair after thats the pain !! :slight_smile: They used this test as part of my ms Dx which I got in 2010 . Sarah x

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Thanks Sarah, Ill be sure to have my hair cut shorter before i get there.

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Hi Tom, I know what you mean about others been worse than us…MS tho is so cruel, and can and does change your life. How long did you wait for your MRI results? I dont c my GP till 5th Sept!!! Total waiting game.

Legs and arms ache so much, and jerky legs which drive me mad.

Keep in touch

Jan

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Hi Jan,

As I was admitted, I had the scans and my neuro is brilliant, she come to see me after her shift each day to give me any results, so got same day results for both the scans I had, (they were on seperate days as they dont like putting that ink in people twice unless nessosary), It probably helped I was in the stroke ward near the exit so she could pop in and I wouldnt keep her there just let her say and go so she knew she wouldnt have to wait around, my EEG VER is on the 5th. the jerking is weird, I think the heat is playing a huge factor, my left arm now comes and goes with weakness and as I said above, I fell down the last few stairs thismorning, I cant even remember how or why, I just thought my leg was good turns out didnt want to work lol.

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Hi Tom, Sorry you are having a bad time, falling down the stairs is not good.I am not good at balancing still, cud not do Gymnastics LOL .

My left arm is weak and has a mind of its own sometimes, we just want answers dont we…in limboland, and going crazy.However saying that everyone on here helps and supports us. Keep in touch, and take care.

Jan x

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Tom Have you tried the human skittles yet? Ensure you shave with right, or you get a mass murder scene. Take it easy :slight_smile:

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Luckily, My arms dont seem to be too bad, it my legs, I am contemplating getting a walking stick as they said they dont want me having any aids as I need to build strenth, its been 2 weeks out of hospital and today it has come back worse, I have felt it coming on which is good I recognise it. If it is a lesion then why the hell did I get better and then worse. Defo need something to help with balance.

And to shave or not to shave, I havent cut my self yet but there is plenty of time.

Hi Jan, I hope your feeling good today. yes we all seem stuck in Limbo land but its hard to diagnose so we will see, I appreciate they want to be right and not say something it may not be, My doc origonaly thought I had a stroke lol 100k a year to tell me something that made me actually poo in my pants. If I raise both my eyebrows one of them drops straiht back down I cant keep it there, now thats weird. Thought about trimming them for less weight but dont think it will make a difference he he.

Have a good day guys.

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Hi Tom, Hope you are well, lets hope we all get answers to our questions.

Take care

Jan x