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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

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 · 15/01/2022 18:34

Just got to protect dd

OP posts:
OMGisthisforreal · 15/01/2022 19:54

I’m sorry you are trapped in this nightmare.
Please keep posting as many of us are listening. X

RalphLaurenG · 16/01/2022 15:11

Are there any treatment plans in place?

SailingNotSurfing · 16/01/2022 20:02

Gosh, what a nightmare. Is your little girl aware of how unwell you are? She must be scared if she realises. Did anything come of the safeguarding referral? I would imagine if you expressed suicidal ideation then that would be a reason - earlier in the thread you said something along those lines.

Flowers Wishing you well and sending you healing vibes.

marthasGinyard · 17/01/2022 08:07

No she doesn't know anything at all and the issues were not to do with me.

Oh my goodness no it's all getting too much but I've got to be here for her.

Thanks all.

OP posts:
BelladonnaKebab · 17/01/2022 12:40

Another one here quietly rooting for you and your daughter. So sorry you're going through this Flowers

marthasGinyard · 17/01/2022 17:34

Thank you

OP posts:
everythingbackbutyou · 17/01/2022 19:29

This reply has been deleted

Message withdrawn at poster's request.

OMGisthisforreal · 22/01/2022 07:59

Hey marthasGinyard
Have you had any news this week you can tell us about?
I keep checking your thread and don’t want to keep asking, I just wanted to post to let you know that you haven’t been forgotten.

Mysa74 · 22/01/2022 08:23

Have another unmumsnetty hug Martha. Try to take comfort in the fact the doctors are still trying to work out what's going on... I remember a really sad thread about a lady who was ill but the doctors didn't think she was as all the tests were negitive and she had no symptoms that they could see... I hope that OP has found health and peace and you get a definite diagnosis very soon xx

marthasGinyard · 22/01/2022 20:22

Hi your messages are so kind and thoughtful.

On Tuesday I have an EMG which will be 5 months after fasiculations and performed on tongue and intercostal muscles too for breathing.

I'm awaiting specialist Ct scan to see if csf leak likely took place.

On 8th I'm seeing probably the most experienced consultant in country travelling miles. On NHS I sent her videos and supporting pics with my GP referral and she's accepted my referral.

In the meantime I'm having to fight for custody with the most mysigonistic/racist vile individual and try and keep things normal for the most amazing daughter in the world.

I've found a private rent that will accept me 10 mins from school. Isolates me a bit but it's her that matters and I'm not having school 6 yes 6 days a week with over an hour bus journey each way.

Thank you all hugs all appreciated at moment couldn't give a shiny one whether they're un mumsnetty or not

Thanks
OP posts:
Mysa74 · 24/01/2022 01:31

Have another massive hug then Martha and a extra ones to keep in a safe place to take out when you need one most.
I'm also wishing you all the luck in the world with your fight against the stupid one (sounds like a hard won escape) and for your medical appointments, you sound like you're going to be in very good hands. After all you've been through in the past you can do this too. The house move sounds like it will make life a lot easier for both of you, that's an awful lot of travelling even if you're perfectly fit and healthy. I'm sure you can make some new contacts and, in time, friends in the area as you sound like a lovely lady and deserve some. Keep posting, we're always here xx GinGinFlowersCake

OMGisthisforreal · 24/01/2022 16:36

Great news you’ve secured somewhere to live.
Good luck tomorrow and hope you’re hugging these small steps of positivity tightly around you as encouragement.
Thank you so much for updating us. We’re cheering you on.

marthasGinyard · 24/01/2022 23:04

Thank you I'm so worried about tmrw EMG as symptoms so much worse now.

Also nhs so not sure if they will give me results straight away. I'll be terrified if they don't.

OP posts:
marthasGinyard · 24/01/2022 23:05

DaffodilThanks

OP posts:
JaneyJimplin · 24/01/2022 23:35

Good luck tomorrow

OMGisthisforreal · 25/01/2022 15:57

Just popped on to see if you’ve posted today, but perhaps I’m too early.
For what it’s worth, I keep thinking of you. And hoping for you too.

RalphLaurenG · 25/01/2022 20:21

Let us know how you are when you get a minute OP x

IamAgnes · 25/01/2022 21:55

Martha,I am keepong you in my thoughts, hope the EMG brings news you want to hear.
Remember mind and body do not operate in isolation from one another. You are in a state where you experience very high levels of stress. I have seen photo of your feet, this does not look good and indeed it may prove the worst, but the symptoms you are describing align with serious anxiety too. This is in combination with muscle wasting in the feet, however I am sure you know muscle wasting isn't only MND and nothing else. There are MND mimickers.
Please keep us posted, we are here for you ❤️

OMGisthisforreal · 28/01/2022 19:41

Just popping on to say hi and hope you’re getting the support you need this week.

Mysa74 · 29/01/2022 21:36

Evening Martha, I'm here with another hug and hoping that no news is good news...

marthasGinyard · 31/01/2022 19:47

Thank you so much for your kind messages it honestly means so much.

EMG was basic but shown nothing bad although only one bulbar area done. He was very dismissive. Also said at 5 months post symptoms could be too early .

I'm up north to centre of excellence on 8th to see expert I've sent all videos, pics to them so I'm hoping for some sound advice. In a way it worries me that appointment has come through so quick but im very grateful.

Meanwhile my amazing daughter is having to talk to social workers/Cafcass etc she's cried to me saying 'I just want to be with you mummy' but she's like a closed book with them.

I should be moving on 14th to private rental 10 mins from 5000 a term school school. My Amazing father of 86 has put down 6 months for us. The irony.

Bastard of ex who has now 'retired' He has his health, my home, my cat, my years of trying, he WON'T get my daughter no matter what the outcome.

I'm so grateful for the support and my dream is to be back discussing 80's music, level 42, Kate Bush, pixie boots and when everything had to be burgundy.

With thanks always I mean it

OP posts:
marthasGinyard · 31/01/2022 19:53

'have seen photo of your feet, this does not look good and indeed it may prove the worst'

Worsening by the week as seen by GP but these neuro's who all know each other see nothing much apart from 'slight wasting'

I had a career for 23 years which insured I know how my body worked, sounded, looked, performed.

We are women. We aren't stupid.

'Overshadowing' can happen with health professionals when you've had anxiety issues and actual symptoms aren't investigated as it's all 'health anxiety'

I've friends of 25 years who are asking me what's happened to my voice, my walking, my face

The amazing ones have researched and are genuinely concerned.

Thinking of you all too

OP posts:
marthasGinyard · 31/01/2022 19:54

Bet I've been on funny threads with loads of you in the past Grin

OP posts:
OMGisthisforreal · 02/02/2022 22:26

Thanks for taking the time to update us, marthasGinyard, I can’t imagine how exhausted and terrified you must be feeling.
Like several others on this thread I have been following your story and feel helpless that I can’t do anything to support you in real life. I hope that your trip up north next Tuesday will bring you some definitive answers so that you will at last know what you’re dealing with.
I’m offering a virtual hand hold and hope your friends can give you support in person. Have you got anyone helping you to attend that appointment next week?

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