Hi I’m Debbie 👋🏻

[Pixielee32]

Hi everyone this is my first time posting and I’m v.nervous.My names Debbie and I’m 55.
I havn’t been diagnosed yet but I find out on Friday!🤞🏼
My story started 3 months ago with horrendous Vertigo, spinning and loss of balance, no medication touched it, then found out I had really high blood pressure and was given Rampiril which stopped the dizziness but still felt off balance. At the same time I found I was getting weak in my forearms and struggled to hold my hairdryer at work, then the Fasciculations/twitching started, (I blamed menopause for all these symptoms!)
I had numerous blood tests, CT scans, x rays and MRI’s with contrast. I saw a Neurologist who ran his own tests and ruled out other diseases eg MS, Parkinson’s. I asked about MND (because of bloody Google!) and he said id need an EMG to rule that out.
in the meantime the weakness/Fasciculations are gradually worse and in shoulders and neck too. My legs are wobbly but no weakness or twitching yet.
After the EMG I had a call to refer me to a New “specialised” Neurologist in 3 weeks. So I Googled him (I know I shouldn’t keep googling!) and he specialises in MND and runs TRICAL Clinics! I’ve asked if I can get in earlier so I got a call yesterday from a MND Co-ordinated to fit me in Friday at the local MND clinic!
So obviously I’ve added 2+2 and made 5 and am now convinced I have this horrible disease!
I just wanted to share my story so far and fingers crossed I don’t have to post again after Fridays News, but if the worse case scenario does happen I’m already here and want to meet other Warriors!
(sorry for the essay!) Xx

[JamesW]

Hi Debbie, I’m sorry that you find yourself here and you must be extremely worried about what you may or may not have. I guess there’s not a lot to say other than I hope it is not MND ……but if it is you are amongst friends here.

Good luck x

[Pixielee32]

Thank you 🙏🏻 X

[Zante]

Pixielee32 welcome Debbie. However it hopefully might not be for long as nothing is confirmed yet and so there is still the possibility of something else going on..the mnd specialist is possibly also the neuromuscular department so it isn't necessarily mnd . Keep thinking positively. Has this all happened within 3 months? All the best for Friday. X

[Ellie]

Pixielee32 I know you're going for a bad reason, but it's good that you're going to a specialist MND Clinic for the 2nd opinion.

Talk to you after Friday.

Love Ellie xx

[Pixielee32]

Zante I am still hanging on to the hope that it is something else 🤞🏼
My arm weakness started last year when I struggled to get out of the bath and out of the car, it progressively got worse, I blamed the menopause and started numerous vitamin supplements and then the Fasciculations started about 3 months ago of which the GP referred me to Neuro.
thank you for your reply, I really appreciate it 🙏🏻Xx

[Pixielee32]

Ellie Thank you so much Xx 😘

[Piglet]

Pixielee32 all the best wishes it is not MND but if it is You will deal with it like everyone else on this forum. It is very daunting at first but everyone finds their way of coping and this forum is great for support, advise and a good old cry or moan. Good luck for Friday. Will be thinking good of you.xx

[Zante]

Pixielee32 if you have some questions also for the neurologist might be beneficial to go with them written down. It can feel overwhelming to try and remember things when you are feeling nervous and stressed. My 2nd opinion was really lengthy and thorough and ended the turmoil of not knowing what was wrong for definite. Little steps. Try and spend some time tomorrow not thinking about Friday! X

[Pixielee32]

Piglet Thank you so much 🤞🏼 Xx

[Pixielee32]

Zante I will be taking a note book with me, and also my partner!
Tomorrow I am booked in at the hairdressers and also having my nails done to keep busy and look nice for the Neurologist! 😂
thank you so much for replying I really appreciate it xx

[denise]

Hi there.
I add my wishes to everyone else's and hope it isnt mnd. As you have probably figured out we are a great bunch on here that discuss everything and anything. I will certainly be thinking of you on Friday.
Love and hugs
Denise xxx

[Pixielee32]

It’s Confirmed, I have it 😢
Dont know what else to say.
Once things calm down I’ll become more active on here. Xx

[Music man's wife]

So sorry to hear this. My husband was diagnosed over 4 years ago, they have been good years with some ups and downs. Stay strong xxxx

[Arcadian]

Sorry to read this - despite the outcome, hopefully relatively early engagement with the MND clinic means a suitable range of support available, as and when things cause concerns.