Awaiting firm diagnosis

[TinyLady]

Hello. It feels strange to write this here because I still feel very confused about everything, but I've read a few posts and I'm hoping spending time with you all will help me process things.

Brief history:

I'm a 46 year old lady and was diagnosed initially in 2017 with migraine after having issues with cramp in my left foot (yes, you read it right). I gave up, assumed it was linked to my hip replacement 15 years ago and ignored it.

Fast forward to a year ago and things had been spreading while I'd ignored them. My speech was slurring (so work signed me off sick), my foot and leg had wasted and my left hand was getting weaker. I saw a Physiotherapist who referred me to a neurologist who diagnosed Functional Neurological Disorder before even examining me.

It has taken me a year of trying to understand that diagnosis and work with it (while continuing to get worse) but I couldn't. So I paid several hundreds of pounds to see the leading expert in FND, who 100% ruled it out and referred me to an MND consultant at Oxford.

He saw me urgently and is now sending me for tests, but he believes it is MND (ALS variant) and is not considering other diagnoses, he just wants to be sure. I am finding I switch between thinking it is another misdiagnosis and I'm a fraud, to absolute terror. I think I just want to know now so I can process it and stop questioning myself.

i've lost 20% of my body weight in the last year and I'm really struggling to eat enough and look after myself, so help can't come soon enough.

Been a roller coaster 2 weeks... I'm supposed to be planing Christmas...

Apart from all that I have a wicked sense of humour and a very bubbly nature, so I'm here to share some smiles too xx

[LindaB]

TinyLady welcome to the forum. Other forum members will tell you MND is often misdiagnosed. Your experience so far sounds awful & it's that period of not knowing that's so tough.
Even before I had my diagnosis confirmed I had support from my Community Neuro Rehab Team....not sure if this is available in all areas of the country. Worth maybe talking to your GP or the team at MNDA...
Good luck and keep posting. A wicked sense of humour helps 🙏xx

[TinyLady]

Thank you, the sense of humour has got me this far. Not sure I am entitled to much support before diagnosis, but I have a social prescriber who is desperately trying to help me access some. It is hard because I can no longer speak on the phone or type with both hands - so everything takes so long and I have to ask others to make phone calls for me.

But I'm sure you all know all about these frustrations!

Just out of the shower and resting before the one handed deodorant application farce begins. Might be easier to stink...

[Lynne K]

TinyLady welcome to forums. Sorry for your scary symptoms and good luck for receiving a definite diagnosis soon so that you can receive appropriate treatment and support. Love Lynne x

[keno]

I was initially diagnosed as MG but later MND
Welcome

[PeterPan]

TinyLady Welcome, we really appreciate a wicked sense of humour here! It sounds as if your journey so far has been a bit bumpy and hope you get some certainty soon.

[TinyLady]

Thank you for the welcome. I'm popping in and out and reading a few posts. So much I can relate to, which is strangely reassuring.
Off to a "happy cafe" this afternoon - sounds mildy concerning, but got to keep an open mind...

[Zante]

TinyLady welcome to the forum. I echo the words above in that the process you have been through sounds awful. I really do hope you have help and an appointment very soon. Hopefully they will have you in for the various tests as soon as possible. Thinking of u x

[matthew55]

Hi TinyLady diagnosis is so difficult for what we have, and I pray you won't be diagnosed with what we have. Whatever the outcome welcome to our family. 👨👩👦💐😁🤗xx

[Gordan1111]

Welcome TinyLady xx

[Ellie]

Hi TinyLady

I saw a Physiotherapist who referred me to a neurologist who diagnosed Functional Neurological Disorder before even examining me.

Well, I live and learn 😁 I never knew a Physiotherapist could make referrals to Consultants - was it a hospital Physio? Was the Neuro legit, not a Quack they sound like? 😏

my foot and leg had wasted and my left hand was getting weaker.

Have you lost any function or dexterity?

When are your tests? xx

[Doug Carpenter]

Welcome TinyLady.

Presumably, at Oxford, you saw Prof Turner or Prof Talbot. The neurosciences department there is world class. You will receive the best of care .

Hugs

Doug

[TinyLady]

Sorry, not sure how to tag people to answer specific questions!

Yes, Physiotherapist requested GP referred me to neurologist. But they really didn't listen and due to covid kept their distance...

I saw Prof Turner and tests booked for end of the month and seeing him again end of January. He said it is a working diagnosis and nothing else considered so told my GP to go ahead as though a firm diagnosis. But feels a bit uncertain still. Probably because of how badly I was treated (local neurologist told me the wasting was my age! I felt like I was going mad).

Yes, severe foot drop on left and left leg generally a bit weak and wasted, likes a good twitch too.

Left hand lost all grip and dexterity - can't even pick up a piece of paper. Arm is not great either, so washing and dressing a challenge. I think the slurred speech upsets me most though.

Generally just exhausted all the time.

Thank you for the warm welcome. It is really helping me feel more calm inside. Had to tell my teenage daughters today

[LindaB]

TinyLady thats a tough day you've had💙💙

[TinyLady]

Yes Linda, it was hard to know how/ when to tell them. But I'm already struggling and they have been worried for over a year watching me get worse. Also with all the appointments it was obvious things were happening. I feel better now it is in the open and we can all talk about it. Been lots of tears today xx