To just ask for support from you all

[marthasGinyard]

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.

Dr has referred me for speech/swallow test today muscle wasting getting so apparent. Bulbar symptoms the worse though

So, how'd the test go?

Sorry I missed this thread earlier.
I've been here about 19 years (but change username a lot) and I remember you in years past as marthasGinyard. I always loved your username.

In fact, I remember you to the point that when you said in your OP that you used to be MarthasGinYard -- I thought to myself, no, it was marthasGinyard. lol

I don't remember specific posts, I just recall that you were a jovial sort.

And, yes, I want that back for you, too!
I hope you don't mind, but imma say a prayer for you. 'kay?
(You can't stop me anyway!)

Also just want to mention that since you changed back to your old username mid-thread, then people who are quickly looking for an update from the OP (you), will not see posts from you anymore, hence the lower response.
Perhaps you should start a new thread in the Health forum?

btw -- you have loverly feet, but not sure what are you showing here? A spasm? Or do you mean muscle atrophy in your feet, too?
If we lived in the same city (or even country (or even the same continent)), I'd come over and give you a fresh pedicure! ...hahaha -- yes, those of us in pain and suffering are allowed black humour amongst ourselves.

It's possible that you do in fact have MND, so I won't belittle your concerns.
I am praying for you that all of your symptoms are just your body finally vomiting out all of the stress which you'd endured and suppressed for so long -- and that it will all dissipate as quickly as it came about.

🙏

Please keep us updated.
Lots of us really do care, even if we're not able to post much due to our own physical/emotional challenges. ❤️

Thank you so much for post

GP saying to prepare for worst

On leaving hospital the spontaneous cranial CSF leak which was ignored by Dr I should have gone to casualty but couldn't bare to go back to Hospital.

Symptoms started since then

I've asked HQ if they can post while thread in old name

I need to leave refuge do I try and rent.

I'm telling solicitor I don't want money from house as Dd will get my half and mortgage will be paid off as soon as I die which I think will be quite soon the way this is progressing.

I've asked HQ to amend thread to my username

Picture showing atrophy in foot.

My fasiculations are constant

My GP's particularly one made me feel so stupid after my breakdown and never listened. The staff at refuge witnessed how dreadfully she spoke to me on phone. If only she'd identified the symptoms I told her. Headaches, clear fluid like a river down my throat. Severe eye pain.

Now I'm dying.

This thread will be too hard for people to read but I need a diary of what's happened so far whilst I can still write.

Do I spend what little time I have left in a negligence claim with that awful GP surgery.

I've joined Facebook and am posting as Carol Brown (not my name) on some groups to try to discover more.

The man we've got away from is going to be the one she ends up
With. She loves the awful man but she's mummy's girl. I wish she had siblings I wish I had wonderful siblings who could help.

I wish I'd never stayed with a man like that.

I wish I could turn back time.

It's cost my little girl her mum.

You might find this information helpful. There's also a site called neurosymptoms fndhope.org/what-we-do/fndkit/

I've read that link thank you so much

I really wanted it to be something which could just be explained

@marthasGinyard

I've read that link thank you so much

I really wanted it to be something which could just be explained

I'm a specialist in this field. I would highly recommend that you explore this route with medical practitioners. This is a serious condition but it is highly responsive to appropriate treatment. It fits what you're saying.

I need to get him out of the house for a while so I can get photo albums/ all treasures together for Dd for when she's older. I'll need to meet friends there to help me with that.

By the time this is diagnosed I honestly believe I'll be almost dead. Apparently 6-9 months is a normal diagnosis time.

Life expectancy not long after symptoms start so it's not looking good.

Dd is sensing something not right it's so hard being mum at moment.

Thank you so much

A specialist in MND or CSF etc.

Because I can still put my tongue in my cheeks, stand on my toes, heels etc I was dismissed by private specialists although they didn't pick up on the CFS leak.

My old GP's letter of refferal said it all really. Health anxiety. So they went with that angle.

They fucking caused this.

I have BFS, before it was diagnosed I was like you. Anxious does not begin to explain the fear that I had. I even updated my will, and spoke to people about my last wishes.
I was convinced I had MND. I cried in my GP office day after day, had MRIis and scans and never once did my GP or neurologist worry that my twitching , myclonus, bulbar and other neurological symptoms was MND. Apparently MND is diagnosed regularly by neurologist and they pretty much know what it looks like by the time you have twitches etc. Anxiety and stress can do very strange things to your body. I have no idea how or why it started, i was so relaxed when symptoms started then. I googled. Don't google!!!
Have a look on Facebook for bfs groups. These really helped me. You will find that all the new people are convinced they have MND, not one person on these pages have.
I hope you find the answers you need.

Also, just to add. My bfs presented as tiny unnoticeable twitches, everywhere including my tongue and eyes. I am not a young fit person, I am middle aged and a bit over weight. As soon as I accepted my diagnosis, they gradually all disappeared.

Mine are not BFS I've already explored it all. I get them when walking, driving in the tiny muscle groups I appreciate your post though. I desperately wanted to have something in common on that Reddit forum.

I really appreciate your post

My dr saw tongue and atrophy on my leg too I also have to unclaw my fingers each morning.

Thank you

I'm so glad you found a solution

I don't know you but I'm giving you a bear hug now.

Bumping your post and sending you a hugs hug and a prayer this morning Martha xx

Just getting harder by the day.

Thank you

I'm so sorry. I wish I could carry some of the load for you.

How are you doing Martha? And your lovely daughter? Been thinking of you lots and can’t believe you’re going through this. Sending hugs to you xx

I just want to say ... so sorry.
You won't collapse. You will get through this.
You don't have MND . They would no, and honestly be thank ful for that and your daughter. He's done this to you. In a year you'll look back and will be a terrible time you've come through.
Much love and good wishes xxx

I most likely do unfortunately

It's a watch and wait I've been told.

The TAU leak that was left last April has caused this and it's breaking my heart. Trying to keep strong for my daughter but contemplating leaving life as it's all too much.

I'm not stupid I know what's happening to my body very quickly

Oh lovely, my heart is breaking for you too but stay strong for your girl.
Have you got a support network around you? x

No

My dad is 86 and cares for my mum with Alzheimer's

He's so worried

I'm not close to my brothers

I avoid everyone

I don't know how to carry on

I recalled a watery blood on my pillow after cranial leak but in my state of breakdown Dr just dismissed. They dismissed everything. Put it down to health anxiety.

They've killed me.