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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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To just ask for support from you all

450 replies

marthasGinyard · 04/10/2021 17:30

My previous names are only1scoop and MarthasGinYard I've been around years.

I suffered from anxiety for a while and was in a very unhappy relationship which ticked on for the sake of our daughter I guess.

In Feb/March this year I became ill with gastro issues and ended up having an awful time I had a breakdown. I vomited blood was losing blood ended to with scan after test a week in hospital all the time being scorned by my partner of 13 years. "I'll be glad when you have cancer" was among one of the things he said to me. I spent a night in a mental facility just to get away. He told me continually he didn't love me, was abusive in front of our daughter. I was struck with a horrid post nasal drip never encountered before and awful pains. More tests scans. Was left with a nasal voice but it went away. I was left with premature cataracts which I believe can be caused by oxidative stress. I spent 2 months with zero sleep in a continuous state of hyperventilation.

June I started to get better. Symptoms abetted and I wanted to leave. I calmly asked for my share of equity and the abuse flooded out. I was cabin crew for almost 23 years and always worked. After abuse I called police and came to a refuge where I have been since the beginning of July.

I started to get positive for mine and DD's new life and solicitor was handling the other stuff. I have some good friends but no family that can help much.

The only medical issue I still had was a strange vibration still in chest and a pressing feeling had started on throat. Gp puts everything down to anxiety and I wasn't worried about these symptoms but wasn't anxious at the time quite the very opposite.

Mid august I had a tremor start in my left thumb. The twitching then became bodywide. The GP did basic bloods which were ok and it didn't go. I went to see a neurologist privately but I felt all was put down to anxiety. I had an EMG test performed which was clear but very early on only 2 weeks following twitching,

The ladies at refuge have heard how I have been spoken to by old GP's and sent me to a new one. She saw the fasiculatiions and my scalloped swollen tongue twitching I explained my speech has changed and she has tried to expodite my neurology appointment with NHS. She took me seriously and examined me thoroughly.

I'm terrified this is MND bulbar palsy. I am woke with involuntary swallowing and throat feels all odd.

Benign fasiculation syndrome was suggested by Neuro but he didn't even look at the fasics. I've looked into this and it seems common amongst the young and fit sports type with big thumping twitches. Mine are tiny ripples some I barely feel but only see.

I'm terrified I will leave my Dd without her mum and with the horrible father we left.

I don't even know why I'm posting I just after being on here for so long wanted some MN support. I'm so lonely and frightened in this nitemare.

If anyone remembers me and can just offer support I'd be so grateful.

OP posts:
marthasGinyard · 13/03/2022 11:51

Thank you

OP posts:
PandoraVictoria · 14/03/2022 08:25

Sorry to hear things aren't great. Do you have RL support around you? X

marthasGinyard · 14/03/2022 10:04

None

OP posts:
marthasGinyard · 15/03/2022 19:38

Is anyone local to me?

OP posts:
inheritancetrack · 15/03/2022 19:53

have you had a formal diagnosis yet, OP?

marthasGinyard · 15/03/2022 19:59

No another 3 month wait

Swallow and ent on 30th March
Also breathing tests

OP posts:
marthasGinyard · 15/03/2022 20:00

Ent was bought fwd as first apt the end of April

OP posts:
Adarajames · 16/03/2022 01:17

Not sure where you are Op, were you asking because you need some help?

marthasGinyard · 16/03/2022 12:47

I don't know

So lonely

OP posts:
Mysa74 · 16/03/2022 19:07

I'm in Essex Martha, I think I'm too far away to be much help 😔
I'm here if you need

PandoraVictoria · 16/03/2022 19:41

I'm Hampshire?

IamAgnes · 16/03/2022 21:46

Martha, I am in Surrey. Not sure this is local to you?

IamAgnes · 16/03/2022 21:55

Disclaimer:what I am about to say is not competent advice.

There's however one thing I'd like to point out.
You posted the photo of your feet with some muscle wastage visible. But you also mention the tongue.
MND symptoms do not "jump" around the body. What I mean is that if it starts in right arm then the next area affected will very very very rarely (if at all) be say left foot. It moves gradually.
So, if it started in the foot, would it then jump to the tongue, rather then the whole leg?
I am sure doctors have discussed many things with you, but was that ever talked about?
Lots of love ❤️

marthasGinyard · 16/03/2022 23:01

Bless you all

Yes I agree, the fact it's multi focal is baffling them and making me even more uncomfortable.

Just wish it all away

Thank you all

OP posts:
wizzler · 25/03/2022 12:09

Checking in @marthasGinyard to see how you are getting on. Hope you are enjoying the sunshine with your dd

marthasGinyard · 25/03/2022 12:31

Wizzler

How kind for you to post

I have ENT swallow referal next Wednesday

I have mnd clinic referal just sent by Dr

The sun is beautiful and the old me would be out hiking enjoying the sunshine.

My dd l

OP posts:
marthasGinyard · 25/03/2022 12:34

Whoops

My Dd loves our new home and I hope to get it sorted for her asap. Finding everything a struggle at moment but she keeps me sane. First thing we need to sort is her bedroom

Many thanks

OP posts:
marthasGinyard · 25/03/2022 12:38

It's only 10 minutes from ridiculous pretentious school and it's brand new and semi rural it's my dream house if only all this didn't hang over us. Strange being classed as homeless to get us housed from refuge. He sent a text to her saying 'aww your last night as a refugee'

I'll try to attach some pictures of our new h

OP posts:
marthasGinyard · 25/03/2022 12:39

She loves it

To just ask for support from you all
OP posts:
YetAnotherBeckyMumsnet · 25/03/2022 14:50

@marthasGinyard just to let you know - we removed the pics of your DD as her face was showing in the images.

wizzler · 25/03/2022 18:52

Moving into your new home is such a big step forward .

marthasGinyard · 25/03/2022 20:00

Whoops sorry re pics

OP posts:
marthasGinyard · 30/03/2022 22:21

Saw ENT today she confirmed fasiculations on tongue and said feels it's Neuro issue rather than structural

May 6th mnd Co ordinator has me booked in but ENT said will try to bring fwd.

Terrified.

OP posts:
HeyThereDelilah1 · 31/03/2022 00:26

So sorry to hear that, I wish I had something more useful to say but thinking of you and wishing you the very best. X

MuggleMadness · 31/03/2022 00:33

🌸just popping in to say 'hi'. I'm glad you're in the new place & that DD likes it & you two of course.

More good wishes for getting everything sorted.

Sadly I'm
Nowhere near you, did you end up trying MN LOCAL?