Awaiting firm diagnosis

[TinyLady]

Ellie - thank you so much for your reassurance. It really is helping me. I know you must have come across people like me on here a million times, so I do appreciate you taking the time to chat. If I can find a way to improve my energy levels then that would be great. Although I'm still aiti g to be told I'm a fraud... 😆

Doug Carpenter - yes, I believe I've been referred to Annabel Nickol, but we spoke to someone called Harriet on the phone. I'm hoping the readings are all fine, but good to know I will have options and support if I do need it. I am so grateful for all these kind words. I feel like a slowly relaxing spring... just don't mention Christmas!

Managed to eat loads more today too, so I must be feeling more settled xx

[Doug Carpenter]

@TinyLady – Your overnight oximeter/data logger will probably come from the Sleep and Ventilation team at the Churchill Hospital who work closely with the MND clinic at the JR nearby.

The Consultant there, Dr Annabel Nickol, and Kathryn Bowyer (Kat), the lead physiotherapist are very skilled and empathetic. They will look at your data and recommend NIV if appropriate.

As Ellie says, it can be a huge comfort, just by giving your breathing a little assistance. Don’t be put off by the masks. There are various types and Kat will make sure yours is comfortable. Just try wearing the mask alone for a few minutes a day while you get used to it.

Hugs
Doug

[Ellie]

Ellie - yes she said they would post it and it is like a watch. I think knowing where I am with the breathing will help me as Prof Turner was concerned about my excessive deep sleep, headaches and grogginess.

Then it will be good to get started on non-invasive ventilation sooner rather than later, if that's what you want - NIV makes the breathing process more effective and effective by increasing O2 levels and decreasing CO2 levels (the culprit for headaches and grogginess.

I know it sounds rather scary but it isn't really and, once you feel its benefits, it quickly becomes your friend 😏

I'm glad you have support and it sounds like the 4 of you are there for each other.

I'm so sorry you didn't have the 'luxury' of a proper diagnostic process and now everything wouldn't be so frenetic and immediate/urgent. xx

[TinyLady]

Deb - I think Christmas will have to happen slowly.... as my left hand is useless and I use a walking stick in my right I can't go shopping so relying on Amazon! But not really in the mood for it all xx

Ellie - yes she said they would post it and it is like a watch. I think knowing where I am with the breathing will help me as Prof Turner was concerned about my excessive deep sleep, headaches and grogginess.

Yes, my daughters live with me - one is still at school and a serious runner and cello player in the county orchestra - so keeps me very busy. The other has been seriously ill with her mental health recently and is not managing too well. My hubby is around too, but works far too hard! I'm lucky to have them xx

[Ellie]

TinyLady Are your girls living with you? xx

[Ellie]

Had a call today, they are sending an oximeter? They want to check my oxygen levels over night.

It's a fingertip monitor and watch strap little device you wear overnight which records your 'Sats' (oxygen saturation) for about 8hrs.

It's not neccessarily that your breathing is of concern, it could be for baseline test data. xx

[Deb]

Hi TinyLady and a warm, belated welcome to the forum from me.

I am so sorry for your suspected diagnosis. The early days are so scary and overwhelming. Its not surprising you feel exhausted as you have such alot to deal with. I found it hard to tell anyone at first because they looked so shocked but I did feel better when everything was out in the open. Youve had the conversation with your children which is the hardest one so you should feel very proud of yourself.

Is there anyway someone else can do Christmas so you can rest and be looked after ? Thats not to say you can't do next year but maybe this year is too tiring.

Take care and rest if you can,
Love Debbie x

[TinyLady]

shelly21 and Rosemary6NT thank you for the reassurance about Oxford and also that all this sudden activity is normal but overwhelming for everyone.

I think it is because I am supposed to be doing Christmas and I just can't get my head round it at all. I'm totally exhausted all the time.

Had a call today, they are sending an oximeter? They want to check my oxygen levels over night.

Hoping PIP money will help pay for a cleaner - I got a robot vacuum cleaner but he refuses to clean the bathroom! 🤣

[Rosemary6NT]

TinyLady Hi and welcome. I can understand your terror, I was so terrified when I suspected ALS/MND I couldn’t function. Oddly once the diagnosis was confirmed I was able to handle things better. The team at Oxford is very good and Rachel Marsden is super. You are in good hands. The first few weeks after diagnosis are crazy busy getting things in place but it is good to have all the services involved. It is worth keeping a large folder to hold all the contacts, notes and appointments in one place for easy reference. Hang in there and best wishes.

[shelly21]

TinyLady its tough for sure. My diagnosis was may this year but it was suspected last year.

The ds1500 can be scary as officially its saying 6 month prognosis but please don't think that is fact. They issue them so we go onto higher rate of p.i.p and don't have to fill in pages of forms. The money comes in useful.

If you stay with Oxford then you will be looked after as they are a specialist mnd centre.

these next few months will be tough for you re house adaptions, countless appointments but maybe try to treat yourself. Xx

[TinyLady]

Susie - it's been hard and confusing. Mostly I've been pretty unkind to myself, questioning why I kept failing to do more and more, feeling I was going mad.

Ellie - love your comment about your son - I loved my time at Uni, I would have hated to spend it at home! But good that you have company and support.

Mary C - I like having people around, but get tired quickly now - especially trying to talk clearly. But adds variety to the day. I really miss my job and long country walks.

Today things changed significantly. My GP called me in because Prof Turner had contacted him and asked for everything to be put in place for an MND diagnosis. So got referred to neuro rehab, major adaptations, physiotherapy, OT - not really sure who/ where else. Plus a DS1500 form.

I'm wiped out and overwhelmed again. But at least help is on its way!

[Mary C]

That’s great Ellie,you have your son close by and daughter at home.

I find when I have company I look forward to it.Some days I just want to stay in bed longer than I need to.( not depressed just being lazy)

Out for some fresh air soon and then some of the grandchildren are popping in with our son after being in the school Carol service.

Have a good day
best wishes
Maryx

[Ellie]

Do your two still live at home?

My son, the 20yo, is away at Uni, but spent much of last year studying from home (I liked this fact more than he did 🤭)

My daughter is in Uni close to home, so she lives at home 👍👍

They bring friends to the house, which is great, they don't feel the need to 'hide' me away, which is a relief... 😘

[Susie]

TinyLady Welcome. Everything we're going through and we still really struggle telling family and loved ones. So much better once it's out in the open though.
Reading your journey makes me realise how lucky I've been. I saw the GP with foot drop and limp with fasciculations in both legs on 15th Dec. GP said MND in his opinion. Referred to consultant neurologist who I saw on 22nd Dec. He agreed with the MND opinion. Tests then in Jan and Feb to give the confirmed diagnosis on 10th Feb.
Hope you get some speedy answers xx

[TinyLady]

Thank you Ellie, it is good to remember that. Just so hard to say the words. But they knew something serious was wrong - it was getting too obvious.

Do your two still live at home? Xx