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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:
Justilou1 · 01/12/2021 14:50

@marthasGinyard just wanting to see if your doctors did a simple glucose test of your nasal secretions to see if you are leaking csf? (You can do that in-house with a simple dip-stick like they use for diabetics.)

DraigFach · 01/12/2021 15:52

My dad has Progressive Bulbar Palsy MND but getting a diagnosis was nowhere near as difficult as the time you're having. The neurologist ordered EMG, nerve conduction tests and MRI and referred to the speech therapy team for assessment. Within a month he was called back in to confirm the diagnosis.

I'm sincerely hoping that this is a physical manifestation of stress for you and that some decent therapy can help unpick the trauma that your body is inflicting on itself because MND is not a diagnosis that you want.

However, if you do need MND specific support, the MNDA (Motor Neurone Disease Association) have a forum of their own with people of all experiences contributing, supporting and suggesting things to help each other. They also have volunteers around the country.

Also, please don't sign yourself off quite yet. My dad hasn't been able to swallow anything since December last year, but with his feeding tube is still going strong. Whilst MND is an awful disease, the length of time you can live with it depends massively person to person and some people live with it for years. I'm sorry you're going through so much Flowers

marthasGinyard · 06/12/2021 05:04

The csf was all post nasal like a river of salt fluid on one side of my throat. After I had ear problems and premature cataract found all on right side. Right jaw clicks Teri le fasiculations including face and tongue. I took Gabapentin for a month and it seemed to bring on all the symptoms. I've even read reports it's been known to cause mnd.

I feel trapped in a nitemare.

OP posts:
marthasGinyard · 06/12/2021 05:08

Draig
I'm so very sorry to hear about your dad. I have been in contact with mnd and sent them various videos etc of the fasiculations.

I've had a scan of spine which I've posted about as it shows worrying markers with spinal canal. I've seen a private Neuro but had only been twitching a few weeks then and EMG was performed too early I think,

The secretions and horrible stuff happening at night biting tongue, breaking a tooth etc is making it all so real. Breathing feels so shallow too.

I hope your dad is managing as well as he can.

OP posts:
Justilou1 · 06/12/2021 07:41

My Dad had MND. I know he was diagnosed very early on. I hope you have some answers. It is a terrifying prospect and I know that saying that there are many symptoms in common with other diseases with better outcomes also, won’t help you to feel better until it’s either ruled out completely or you know for certain that this is what you have. Please keep us in the loop. I have been through this with Dad and can maybe be a distant support person. I’m in Aus. Our medical system is different, etc, but I genuinely care and hate the thought of you being lonely and frightened. Looking after Dad and then later Mum (other things) actually kicked off my mid-life crisis and now I’m studying nursing. I certainly don’t claim to know anything about anything yet, but I’m an ear in the dark.

NovemberNovemberDarkNights · 06/12/2021 09:01

Hi

(((((HUG)))))

I've only just seen your thread, I'm sorry I missed it when you started it. You're definitely a familiar name to me. I've name changed loads since the various security issues & various other bits, but I've been around since Justine was in knee high socks.

I'm SO sorry for everything you've been through, you've had a hell of a time!!

It sounds like you're starting to get somewhere with a diagnosis?

Are you looking for places for you & DD to live? You need a 'home' not just a place to stay (as lucky as you've been to get into the refuge) and I guess the refuge needs your room for others.

Can you do some things with DD that will help you relax - like yoga, mindfulness etc.

I hope your physical condition isn't as bad as you fear, so if you can address the anxiety at the same time hopefully life will feel a lot better xx

JollyHolly30 · 06/12/2021 10:10

I'm so sorry to read your posts. I hope you get real answers soon 🙏🏻

CorrBlimeyGG · 06/12/2021 11:19

I've had a scan of spine which I've posted about as it shows worrying markers with spinal canal.

It doesn't. The report shows some degeneration that would be typical of most women of a certain age.

Justilou1 · 06/12/2021 11:43

I also know you are anxious about everything… logical. You have lived through a lot more violence than most. (Me too.) That also shows up on these things.

marthasGinyard · 06/12/2021 13:09

Justilou

That's so kind of you it really is I'm sorry to hear what you've been through.

OP posts:
marthasGinyard · 06/12/2021 13:11

Thanks all for the lovely supportive posts. It means so much at the loneliest time I've ever had

OP posts:
marthasGinyard · 06/12/2021 13:13

November we are looking

He has offered me 37,000

We are due equity of 90,000

Awful situation through and through

OP posts:
Bluesparkled · 08/12/2021 04:22

Hi OP. I haven’t any great advice to offer but I hope you’re doing ok.

marthasGinyard · 09/12/2021 05:22

Don't feel I can do this much longer.

Each week symptoms worsen. I can't breathe if I lie flat I don't sleep more than 2 hours at a time. I'm constantly woken by jaws clamping down on my tongue.

I just want to go to sleep and not wake up.

I've got dd though is it worse to see her mum go like that or with a horrific disease within probably 12 months.

I picked up her new bike for Christmas I keep it in boot as nowhere at hostel to store it.

My life is over I want to let that Dr know who has caused all this what she has done.

When you have some health anxiety even though mine was caused by very real things. unfortunately this overshadows the care that you receive. She should have recognised a cranial leak. I should have gone to A&E when my brother offered to take me.

I can't live this life any longer

OP posts:
Bluesparkled · 09/12/2021 11:46

OP, please seek some face to face mental health support, there are people who can help you and your daughter doesn’t need you to be different, she just needs you to be there.

marthasGinyard · 09/12/2021 13:51

Early help are involved as are the well-being team.
Thank you

OP posts:
RalphLaurenG · 14/12/2021 17:44

How are you getting on OP? Is your dd excited for Christmas?!

marthasGinyard · 18/12/2021 14:25

Struggling

Feel really poorly and terrified with my symptoms so worried for dd

OP posts:
wizzler · 18/12/2021 18:59

Hi op. I don't have any advice but want you to know I am thinking of you and your dd

Mysa74 · 28/12/2021 21:38

Hi Martha, how are you doing? I haven't forgotten you. I hope your daughter had a lovely Christmas xx

IamAgnes · 28/12/2021 22:08

How are things with yoy?

marthasGinyard · 30/12/2021 13:06

Like living in a complete nitemare from dawn til dusk hoping I won't wake up but I do

OP posts:
RalphLaurenG · 30/12/2021 20:48

Do you want to talk about it? X

marthasGinyard · 01/01/2022 17:51

Thanks Ralph it's all just too much though

OP posts:
RalphLaurenG · 01/01/2022 23:55

Understood. Here when you need a bit of support. X