highlander 30/04/18
Last reply 1 month ago
Reacently DX

Is this the norm?
MS Nurse – Why are you here?
Me-you sent me a letter.
MS Nurse-Has the neurologist seen you?
Me-He sent me a letter saying I have MS probably SPMS refer to you.
So here I am tarra !
Nurse-here’s some books I’ll see you in 3 months Bye
Is this par for the course? All the literature make her out to be your fairy god mother at best font of all knowledge relating to MS.
Or was she just having a bad day?

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vixen
2 months ago

Hello @highlander, well, that all seems pretty strange and clearly doesn’t inspire confidence! You’re right, often the MS nurse can be the glue that holds things together so sorry it hasn’t gone great for you. Why don’t you tell us about your situation, have you been waiting for a diagnosis for a while?


highlander
2 months ago

Hello…. apologies for not saying that before, new to this typing malarkey!
Long story short.
Have no balance, double vision sometimes, now have an ankle/ foot brace, walking stick, perm pins and needles in feet and hands, no feelings in my ears, shoulders or face to name but a few.
Have to use self raising flour! Have major probs speaking, which keeps the wife happy as I’m quieter!
Had MRI and extremely uncomfortable spinal! Don’t be the first patient they see after coming out of training bless her she did try and try then called for the boss.
I’ve been plodding along with this since Jan 17 finally got the DX Feb 18.
Like I say new to all this so please bear with thanks.


highlander
2 months ago

Hello @vixen, apologies for not saying that before, new to this typing malarkey!
Long story short.
Have no balance, double vision sometimes, now have an ankle/ foot brace, walking stick, perm pins and needles in feet and hands, no feelings in my ears, shoulders or face to name but a few.
Have to use self raising flour! Have major probs speaking, which keeps the wife happy as I’m quieter!
Had MRI and extremely uncomfortable spinal! Don’t be the first patient they see after coming out of training bless her she did try and try then called for the boss.
I’ve been plodding along with this since Jan 17 finally got the DX Feb 18.
Like I say new to all this so please bear with thanks.


peterfrancis
2 months ago

Hi highlander

I had a similar episode with the first MS Nurse I saw, asking if I knew why I was there and what was wrong with me. She seemed very blase about it, almost as if it was too much bother for her.

Thankfully I see a different one now and she is a lot better.


highlander
2 months ago

Hi Peter

I see what you’ve done, sent her in my direction well I’ll annoy her so much she’ll get better at it or move on again, I really can be very annoying!
Keep smiling


tracyshudo
1 month ago

I am Tracy Shudo thank you for excepting friend request. Wow your experience with the nurse was almost like my first one with a neurologist. I had really bad vertigo, then started to get numb patches on different parts of my body. So Family Dr sent me to hospital ASAP. I saw intern first , he said someone my age, at that time I was 33. He said you most likely have one of 3 things, the inner Ear virus, your Dr thinks you might have or, 2 a brain tumour or 3 MS. Well All I knew it could not be the 2nd one I had a 3 year old boy. Well after 1 hour THE Dr came in. He looked at me laying in bed and said so are you falling down? I said no not really but I can barely walk and when I do I have to be close to a wall so I dont fall over. He rolled his eyes and said I have patients that are way sicker than you. Go home. Now remember I was just told I could have had a brain tumour? and no ones worried about this than me??? Well I took the bulls by the horns and made the call saying you have to give me more tests to see just what this is. Turned out to be MS not brain tumour. Yes that’s a good thing, but what to do now? 23 years ago there was very little treatment’s. I have learnt over the last years to stay around positive people and things, dont just take DRS word a gospel do your own research and take care of yourself. Sorry that was way long. Have a great weekend, yours has already started. I am in Vancouver Canada so its around 1:30 pm Fri afternoon. Take care my friend. Tracy

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