Where are they going with this

New diagnosis and before diagnosis
1

Hi guys and girls,

Ok so their are plenty of posts from me to say how I am doing so I will start from the end.

Since I have been out of hospital I was fine for maybe a week all bit it in discomfort and now back to how I was with jeely legs only this time my legs spasm and kick out quite violently throughout the day, this has been for the last 3 days.

I recieved another letter for an EMG test on the 11th. I have a VER EEG for the 5th and a follow up with Neuro on the 27th.

I now also have a walking stick I purchased to help me around, the physo terrorist said she didnt want me having aids but I am really not good on my feet and need it for now.

Ive tried to contact my Neuro but her receptionist is away and it says dont leave a message.

Where are they going with this and what should I do? I really dont want to end up back in hospital. (I went to the doctors they gave me ampitriptolin and strong cocodimal type tablets 500mg paracetamol and 30mg codine). but these are not working and they will not give me anything that will intorupt with the above tests.

2

Hi sounds like your having a rough time…Dr’s dont seam to understand at all. My legs ache and I kick out my legs too because they ache so much, and I dont know what to do with them sometimes. I mentioned that also I am having heel pain.This is not every day, but it happens if I have been on my feet too long.

Take care

Jan

3

Its horrible when we’re just left to deal with it all with limited help and no answers as to whats happening with our health. I’m sorry you’re going through such a rough time.

Is there not another number or emergency contact. Can you speak to one of the other neuro secretaries and explain you’re having some problems and need some extra meds to helpbut your neuro/secretary are not around.It sounds like you’re having a rough time and of course want to get to the bottom of what it is whether its MS or something else but in the meantime letting you struggle on isnt fair either. Hope you feel better soon.X

4

Hi Tom,

it does sound as if you are going through the mill. It does seem outrageous that there is no cover for the receptionist - lack of resources but it is very hard on patients.

At least tests are scheduled - they are working on it - though much slower than one would want.

I hope you get answaers soon.

Jon

5

I am greatful all my tests are next month, I have been out of hospital for a few weeks and I am not upset or worried, slightly scared but thats normal, I know there are others worse than me but things do seem to be geting worse, and the twitching is all day and by the end of the night I feel I have run a marathon, (if only I had the body of a marathon runner for it!)

I just dont know where the are going with the tests and it is just confusing as to what they are actually looking for. ShouldI keep trying the Neuro to update her on how I am feeling or just wait until the 27th? If it gets worse I could end up in hospital again which I really dont want at all.

Thanks for all the encouragement guys.

6

Doh! Didn’t see this and replied to the other one (I always start at the bottom of the page). That’s the second time I’ve done it very recently. Stop posting twice will you everyone?! LOL!

Kx

7

sorry my fault, I dont know why it did it I only clicked once.

8

I forgot to mention memory lose ha ha I see the irony of this, but the last week it seems to be getting worse, I walk into the kitchen and stay stunned, walking out with a coffee when I wanted something else, I go upstairs and completely forget why.

9

I made a coffee, and when I took it into the living room to sit down THERE was a cup of tea!!!

Jan