Feeling totally at a loss

[Flowers71]

Hi all. Am not diagnosed yet am waiting to see a neurologist. Which I know will take sometime but it doesn't help my worries.
It first started August last year while on holiday my husband noticed my left shoulder was twitching but really didn't feel it. Them at Christmas my left leg felt really stiff I couldn't get comfy with it. Then it passed.
A few weeks after we was out shopping and my left leg did it again. Stiff like i couldn't walk properly.
Then over the last 6 weeks I was in the shower washing my hair and my left arm felt funny like hard to use. Weak lethargic.
And also found it hard to pull a piece of kitchen roll off the roll. Even putting my hand in a packet of crisps i cant seem to use my fingers. And have calf muscle twitching which has never stopped. I've tried all sorts to stop them. Now my right arm feels the same weak heavy. I can still use both but my grip on left hand seems less if you understand me. My doctor has write to the hospital has urgent.
I know am not going to see anyone soon because of the cronnavirus I've even rang around to pay for private but nobody is seeing anyone at this present time. The doctor has given me amitriptyline which is not really doing much to help my twitches. I feel so trapped. I know that this is not a common thing with mnd/als but I wake up with numb knees and my hands. Which I find most bizarre. I can't put into words.
Also I can wake up with what I can only describe has internal shakes only for about 30 seconds. And jerks in my shoulders and my left leg will move on its own. And a gurgling noise from my throat when am lied down and wake up like a frog croking.

[nunhead_man]

Good afternoon Flowers71

I'm sorry to hear of your troubles.

The period between thinking you have got MND in the time when you know was for me the worst period of all.

Your progression is very different to mine as I am arm onset and I was reflecting I am not sure I have heard of anyone developing both arm and leg onset together plus a bit of the Bullbar version which affects chest, breathing, voice et cetera first of all.

One thing that might help with your self-diagnosis is that those of us with motor neurone disease have a particular hand shape as in these pictures as the muscles waste away

https://www.semanticscholar.org/paper/Motor-neuron-disease%3A-current-management-and-future-Simon-Huynh/54b72d7d0d804770c98e12f4ecebd15a956cd6fa/figure/0

Does your hand look like that?

Can I ask if you have help at home - you mention your husband? Even without a diagnosis if you need care I'm sure you will be able to get it

[Flowers71]

Hi yes I do. It's just started it's a little dent. In my left hand where my thumb is. I do have help at home but am finding it hard to speak to my husband i don't want him to worry. I got a twin sister and her thumb is completely gone. She can't even move her thumb. I've not told her what I think it is cause she lives alone and under lock down I don't want to worry her. I know she's not well at all to be honest. I don't know what to do. Am scared to say anything to anyone that's why I've come on here. I feel like am stuck in a mental block.

[nunhead_man]

Hi again

I mentioned that hand shape because I can remember going to my first local MND branch coffee afternoon and meeting one of the Association visitors who I think was asking herself why was there because I'm still perfectly ambulant and my MND was not particularly obvious - but she took one look at my left hand which is the one most badly affected and said oh yes that's the right shape.

I'm sorry you have a mental block and I'm not sure what I can suggest that you do to get out of it.

I suppose my usual solution of talking to your nearest and dearest about my worst fears would not work in this case?

This page takes you to the relevant local group and I'm sure somebody there would be prepared to have a chat

https://www.mndassociation.org/support-and-information/local-support/find-local-support/

[Flowers71]

Andy thankyou for your messages. I did email them last week and they answered me. They said it was not typical of mnd because I had shoulder pain few months before the pain was horrid.but it's gone now. I would ring them but can't because my husband is at home due to beening firlowed i don't know what the he'll to do. I can't ring my parents because they are in their 70s to tell them I don't want them to worry. I think it's come from my dad's side of the family. His uncle hand frontal dementia. We are 49 and have a younger sister and I've got a daughter that is 25. Am worried for them to its so hard I could scream I don't know what to do. Am sorry