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Denise
9th September 2015, 14:32
I was told 2 weeks ago that ive got mnd & im waiting for my 1st appointment. Im feeling a bit lost at the moment because i dont know what to expect. If any of you could help me out here even with questions to ask would be great. Thankyou x

Steve
9th September 2015, 15:06
Hi Denise

I would ask about any symptoms you are experiencing. They can usually refer you to other services or prescribe meds to help.

I know it's early but in the future you might consider applying for things like PIP, council tax reduction, blue badge etc. It's a lot to take in at this stage. There are threads on here you can search or MND Connect can help.

Best of luck, Steve

Ellie
9th September 2015, 15:43
Did they change the appointment date? It was to be yesterday, you were probably all psyched up for it!

You had pain in your arm, so tell them about it and they'll know if it's cramp/spasm or neuropathic pain and can help you with meds and/or physio.
It's normal for one's brain to turn to mush when in the Neuro's room, so before you go, write down any questions you have. You'll see Multidisciplinary Team so, as it's your first visit, you may be referred to Physio, OT, Respiratory & Neuropsychology for baseline tests. It can be daunting, but they are all individually important, going forward.

Good luck,
Ellie.

Denise
9th September 2015, 15:54
Thankyou steve. I have now seen my doctor, but he didn't have all my test results in from my previous neurolagist so he is saying I've 99% got it. So im going back next week to see his team of nurses etc who will contact our local hospice & have a ot come out ect! So i feel betteri have seen someone now.

Denise
9th September 2015, 16:01
Yes i did go ellie. He was very nice. All my notes hadn't been sent over so i had to go through everything.he is also going to start me on a med that can slow it down next week, i had a blood test done as well. I feel happier now i have seen someone. ��

Ellie
9th September 2015, 16:15
Good that you're feeling a bit more relaxed Denise.
I'm thinking he has put you on Riluzole.
So, when is the team appointment? Plenty of time to write down your questions!

I also started with arm symptoms but didn't have any pain: did he give you anything for your pain?

Ellie x

Denise
9th September 2015, 19:29
Yes riluzol is what he is giving me. Im on gabapentin which has helped. Im hopefully meeting the team next thursday, because we are going on holiday on the 25th, he wants everything set up for when i get back, so hopefully it will be next thursday, just waiting for conformation.
You are the first person i have spoken to Ellie where it started in your arms as well. It is so frustrating. I struggle with everything now, but i am still working, for how long i don't know, time will tell. X

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