Still here, waiting in limbo land..

[Sammbie]

Hi everyone,

I posted a little while ago (March, I think).

I was waiting for my EMG, which I had on the 1st April. Since my last appointment with my neurologist my symptoms progressed some more, more weakness and atrophy in left foot and hand and a cluster of pyramidal signs.

Due to the progression I'm having another MRI of the brain and whole spine early May. The nerve conduction studies were fine but not had the results back from the EMG yet.

I know at the moment there isn't a lot I can do other than be as optimistic as possible but days like today get to me more than others. My kids wanted to go up our local mountain, whilst I may make it up, I won't be able to get down. My leg gives out when walking down any kind of slope, I'm also pretty rubbish on uneven ground.

After hours of whining and moaning everyone has settled and I was feeling pretty low. I ignore the more annoying symptoms, like losing the ability to spread any of my fingers on my left hand or wiggle my toes on my left foot. However, I'm still hopeful there is some other cause.

How did you or your loved ones cope, knowing that you have something that was causing weakness, atrophy and the beginnings of losing use of part of your body? But not having a definite cause but knowing what it may be?

Again, thanks for your support, past and present.

Samm

 

[WendyWooG]

Hi Samm
It's more difficult if the kids are younger, we tried to ensure that they didn't miss out on things. So if they wanted to do things I couldn't manage they did them with their dad or friends and relatives and took lots of photos so I could be part of it when they got home. I had lupus and fibromyalgia for years before the mnd arrived we learnt to balance life. We also got very creative with doing things that I could manage found new hobbies and fun things to do that were not s physically demanding.

We were also very frank with the kids that I was poorly, and that it meant that I couldn't do things. We didn't go into nitty gritty or scare them but we were honest about what I couldn't do. I have a four year old granddaughter she adores coming to visit as she gets to dress up and snuggle up in bed with me to watch Disney films and is allowed to have rides up and down on the hospital bed.

While we were waiting for the diagnosis she just gradually got used to the fact that when she spent time with me we did things like reading colouring films cooking and that we didn't know if I was going to get better, she now takes it all for granted and enjoys doing things for me. It's a time when calling on friends and family can really help you and the kids get through it.

I really hope they find something that's treatable for you.

Sending warm hugs from the South.

Wendy

 

[Sammbie]

Thanks Wendy,

That's what I am finding hard is to achieve that balance. I'm a single mom of 3, aged 12, 9 and 8, we've already had 4 tough years through DV and stalking. We also have a 10 year restraining order to prevent dad contacting us.

At a time when I should have been piecing our lives back together I started on this new journey. It will be a year June. Family is strained too, my mom is full time carer to my dad with severe COPD, my grandma who has terminal cancer and also my grandad with severe heart failure.

I try not to put so much on them right now, especially when I don't know what it is I'm facing. Going out is a struggle, mostly because of my PTSD and dad (the stalker) been allowed to live in the same area. Now I'm losing strength in the left leg I certainly can't run anymore, so we mostly go out of town if we do go out but I'm struggling to be on my feet after a few hours.

Lots of what ifs and uncertainty being in this limbo. I don't even want to consider what will happen to them if I continue to progress at the rate I have been these last few months.

On a more positive note, I'm teaching them to cook, bake and tonight we're having a duvet night, pop corn and BGT.

Mostly I carry on, and rope the kids into helping in fun ways.

Still hopeful it's something treatable also, I'm not ready to leave my babies just yet.

Warm hugs from Shropshire

Samm x

 

[Sammbie]

Hi again,

I've been busy trying not to think too deep about my health since my last post. Slightly more progression in my hands, in particular the left and in the left leg.

I'm dropping things on a daily basis now and can't turn my front door key with my left hand anymore.

Still not had the results of my EMG yet, neuro wants to wait for results of MRI before calling me in to discuss further. Since my last post I've had 2 full MRS and CT scan of my cervical spine.

No further forward yet but becoming increasingly frustrating not knowing one way or the other.

I'm still hopefully it could be a number of things other than ALS but I really can't help but worry when my hand looks like the poor cousin to the right one. (Pic attached).

I hope it's OK to post here, I don't know where else to go yet, I've talked through my worries with my GP but the answer is the same, let's wait to see what the neurologist says.

Thanks for being here and sending you all much love and appreciation for such a great job you do here considering <3