Clinic appointment upsetting

[TinyLady]

Sorry to come on here and moan. I've been awake all night crying, which I know is pathetic, but I feel really vulnerable and scared. I'd quite like to call it quits now. I'm not scared of the MND so much as the feeling of getting more and more vulnerable but with no help forthcoming.

I've lost all confidence and trust in all the services supposed to help me and I really don't know what to do. I feel alone and helpless.

I had my first clinic appointment yesterday. Wasn't entirely sure what to expect, but certainly didn't expect to be treated like I was. I'm not sure what the point of the clinic is? They want to see me in 3 months, told me to inform work and DVLA (I had to actually ask if I do have MND), apparently yes I do, but he seemed guarded about it, said I was atypical and something along the lines of lucky I'd had it a while and was still alive... no idea when I was officially diagnosed (or maybe that was it?).

I had thought I would be seen by the team, meet the MND nurse. Apparently my oximetry readings weren't even recorded.

Do I just get on with it and hope if things get urgent they will do something? I did mention 20% weight loss, sleeping 11 plus hours deeply a night etc. But they didn't seem too concerned. Maybe I am just neurotic 😆. Will the palliative care team look after me instead?

I think I'm also scared because I keep nearly falling backwards downstairs onto a tiled floor...

Thanks for listening xx

[Hope]

TinyLady Sending hugs. I had to ask whether I had a definite diagnosis as the consultant just told me the signs pointed that way. It was explained to me that in order to get all the support services in place, it would be noted that I had bulbar onset mnd. My follow up appointment is 4 months after that. I had my respiratory tests last week and my next appointment is June! I do not understand why I have to wait so long at this stage. I understand the feeling of being alone and helpless, I hope you get some helpful answers from your MND team. x

[Rosemary6NT]

@Tiny Lady that sounds horrific, no wonder you are upset and scared. Help just kicked in for me I didn’t have to initiate anything. Others will no doubt have ideas/experience. Hugs xx

[denise]

You are not pathetic don't even go there. You shouldn't be treated like that. How cruel. I have found things difficult and the multi disciplinary hopeless, if that's what you attended. You should have someone fill in a ds1500. I'm trying to think back to how things worked for us. We had/have a fantastic Mnd coordinator and team who helped with everything.
im sure others on here will have better suggestions. Having been abroad I found it a struggle to know where to go for help and 6 months on it's still difficult. Everyone quotes covid and no one seems to share information.
Can Mnd connect help with putting you in touch with your local team.
We are all here for you.
Love and extra hugs Denise xxxx

[TinyLady]

Hope - I was seen 2 months ago initially, but had been misdiagnosed since 2020 with something else.

I've lost my ability to walk since Christmas as my remaining useful leg has given up. My left arm is pretty useless and my speech not great. So I'm not able to look after myself. Home alone all day, I can't get food or even walk about now. Hubby is at work and daughter at school.

I'm only 46 and I feel like a waste of space and a nuisance. Social services keep promising a needs assessment then when I chase (via text) they have excuses why they can't do it.

The council send me in circles (probably hoping I just give up and either sort myself or die)

denise - I had a DS1500 completed early December - which I thought might finally get me help. Lots of people came, talked, promised... but are all now fading away again...

Rosemary6NT - appreciate you sending hugs. I think it's all just too much for me.

Was promised stair rails but that fell through too. I feel really lost and just wanted to rant I suppose. I'm not sure who should look after me, maybe no one? Maybe my expectations are too high? In which case I don't want to just exist. I had hoped to enjoy my last few months of some mobility.

My brave face is slipping badly today...

[matthew55]

Please don't let one ignorant fool get you down. You can live a life you choose and we are here to help you..

[TinyLady]

matthew55 - thank you. I wish it was just one person.

None of my family contacted me to wish me luck/ ask me how the appointment went. The council are useless, social services are full of empty promises and I can't even work out what my date of diagnosis is for these stupid forms 😆

Staying in bed today sulking 😆

[denise]

Well if it helps I have had the same problems. It's covid Brexit and leaves on the line. You are certainly not alone.

[LindaB]

TinyLady sounds liken you've had an awful time at the hands of professionals who should know better!

All reports from neurology will be (should). sent to you and your GP. Can someone chase this up for you? This should include diagnosis and onward referrals.

Not sure if you're linked in yet to the hospice community team I've found then great at chasing up other professionals.

As Denise says contact MNDA they can offer advice and support.


Good luck 🙏

[Heather R]

TinyLady hugs from me too. It seems such a postcode lottery. I have never got much from the neurology team. Met the consultant initially when first diagnosed one and a half years ago on zoom, after this occasional zoom with a young registrar, felt very nominal event. Where I have got a lot of help from is the local neuroenablement team with OT, physio, SLT, etc. Have you not been referred to anyone like that? Maybe MND connect can help you find more help? Good luck with it all and keep us posted how you get on xx

[GillB]

TinyLady

Sending hugs as it seems like you are having an awful time.

Same here in that the MND clinic and Neuro are only three monthly appointments but the local team are a lot more proactive, although I have had to chase some referrals.

MND Connect might know who your local team is and could out you in touch? Or as others have suggested try contacting your GP.

In terms of the DS1500 it gives access to the higher level of PIP and support group for Employment Support. You do have to apply for both. The MNDA Benefits helpline advised me on this.

I hope you get some help soon x

[TinyLady]

Thank you for your kind words - I'm seeing the palliative care doctor tomorrow 🤞- not sure what to expect but really scared that this final thread of hope will not be good.

Not had official letter of diagnosis from anyone yet, but consultant phoned my GP early December and told him and that's when DS1500 got done and other referrals.

I really thought things would happen, especially as we are on catch up already... it started 2017!

I keep hoping each week... maybe this week I will stop getting worse and help will start... I'm just exhausted.

I will see if palliative care doctor wants to look after me. Otherwise I will email MND association for advice. I must do things wrong/ present wrong or something. Only one consultant has been amazing and he was the private one who told me I absolutely didn't have what the others insisted I had. Shame you can't keep a specific consultant 🤣

Just sent ranty text to Social services- I wish I could still phone and shout!

[matthew55]

You will find all the doors open with an official diagnosis. We all did. Just hang on. 🔓👍🎂✌️😍xx

[Suefromwakey]

Dear Tiny - it's a lousy situation and some parts of it I think we have all experienced,

The only way I got anything moving was 2 years ago, before diagnosis, I "Self Referred" that did the trick - certainly at Wakefield - for OT, wheelchair services and Adaptations, but as for other stuff I can only sympathise,

I had to bang the table for both of us to get a Social Care assessment..........waste of time but at least we are now an a "List" they'd better be geared up for him come the time I really need it,

I personally am up the old creek - and defo have no paddles - Albert's not been seen by anyone to do with MND for 24 weeks now - I feel more than isolated and whilst he's not bothered and says the MDT meetings are a waste of time, for me its about keeping in touch, somebody remembering about him,

His last appointment (at 22 weeks) was cancelled the day before due to the Patient Transport services being withdrawn due to Covid - it seems like something thwarts him, his main aim of that particular day was to get a DNR (New name for this escapes me) so even that didn't get done,

Its a merry go round - but not very funny

Sue

[TinyLady]

matthew55 - hanging on with gritted teeth here.... about the strongest grip I have 🤣

Suefromwakey - sounds like you have struggled too. Lots of people suddenly came, seemed to panic a bit and have now all disappeared again. Am I right in thinking Albert was also an unusual/ atypical case?

Unfortunately I am home alone all day, most evenings and some nights/ weekends. As I can't even prepare food or move and hold a drink, I'm fairly sure a bit of assistance will transform the quality of my life. I'd like to get out and about and doing my hobbies 🙂