Getting used to a new normal…

[AngieCanuck]

Hi everyone, my name is Angie. Last week my neurologist shared that he feels I have a motor neurone disease. Still not sure if it’s PLS or ALS, or Hereditary Spastic Paraplegia? but he is leaning towards PLS. Right now I appear to have upper motor neurone involvement only. But my condition has continually degraded over the past few months, so who knows where it will end.
I just turned 44 years old and I’m married to a very supportive partner and we have an 8 year old daughter. I was teaching in elementary school before my symptoms prevented me from doing my job.
It’s been a roller coaster of tests and dr appointments (MRIs, countless blood tests, 2 lumbar punctures, an EMG, and now genetic testing) but it seems that my neurologist has settled on a MND. Right now I can still walk a little, with a cane, but spasticity if worsening. It started in my left leg last February, with a tingling and weakness that worsened. Now I drag my leg and it’s moving into my right leg. Lately, my arms have started to weaken a lot more. It’s hard to lift them, and hold them up, especially my left. Lots of constant fasciculations, and some choking on my own saliva at random times.

I have SO many questions! I feel SO Overwhelmed!! It feels like a bad dream. I’ve been able to keep pretty positive and hopeful, for the most part and continue to have a sense of humour about it all. The only time that I get really sad is when I think about my young daughter. How can I tell her? Should I tell her? She knows that I’m permanently disabled and I might end up in a wheelchair. I don’t know! Any advice would be so appreciated.
My next neurologist appointment is at the ALS clinic, waiting for the HSP genetic results and I’m getting whole genomic screening. Started Baclofan. Don’t really know what to do!?!
thanks in advance,
Angie

[keno]

hi Angie, welcome to the forum

[Aidan in Shrewsbury]

Hi Angie sorry to hear about your diagnosis. You will find this a very sympathetic place to be as we all have or are caring for someone with MND. Try to stay positive my attitude is you can be completely miserable and depressed with it or try to stay positive. Not easy at all at times of course.

[Ellie]

A warm welcome to the forum Angie.

Are you in North America? I ask because there are booklets available for children affected by a parent/relative who has an MND in the UK so, if you're not in the UK, maybe your national equivalent has similar booklets and workbooks. xx

[AngieCanuck]

Hi Ellie,
Yep, I’m in Canada.
Thanks for the warm welcome everyone💕
We only have the ALS Society here in Canada. My neurologist said they support people with MND, but when I reached out they said I needed a definitive diagnosis. I’m really confused about that because from what I’ve read, it’s hard to be definitive with MNDs…? If the neurologist is leaning towards PLS, then I assume it’s PLS? I also heard they won’t diagnose PLS until after a few years because it could actually be ALS?? What do you do in the meantime…are you in diagnosis limbo? Does anyone else have any experience with diagnosis limbo?

angie

[Ellie]

AngieCanuck The term motor neuron disease is an umbrella term covering ALS, PLS, PMA, PBP and, to a lesser degree, Kennedy's Disease.

Often people get a working diagnosis of PLS because, as you say, many Neurologists don't diagnose PLS until after 3-4yrs of solely UMN involvement, i.e., an absence of lower motor neuron, LMN, signs which stops the diagnosis being ALS. Is your Neurologist an ALS/MND Specialist?

I know it must be tough knowing that you have an MND, just not which one, and I know it's pointless me saying that it's a relatively 'good' thing the exact MND can't be accurately diagnosed because, naturally, you wish you never heard any of the above disorders in the first place!!! The worst forms of MNDs tend to be relatively straightforward to diagnose.

[Maria C]

AngieCanuck Welcome! Fellow Canuck here, south western Ontario.

If your screen name didn’t give you away, mentioning the ALS Society did. They are the reason I’m a member of this forum. I had exactly the same response from them that I would need a diagnosis before I could register with them. Where in Canada are you? Feel free to message me.

[LindaB]

AngieCanuck welcome to the forum...look forward to reading your posts 🤗👍🏻

[Tabbycat]

AngieCanuck welcome to the forum.
I think lots of people here will share your experience of diagnosis limbo, or being diagnosed with something else, then a few years later getting an MND diagnosis. That was my experience I was initially told in 2017 that it was CMT (Charcot-Marie-Tooth disease).
As an aside, I spent my honeymoon in Canada 🇨🇦

[matthew55]

Welcome Angie to a site filled with kindred souls. Very sorry to meet you but very happy you're here. 😊🙏💐😁xx

[AngieCanuck]

Thanks for all of the warm welcomes. You are all so kind and helpful and I’m so appreciative. I have a zoom meeting with the ALS society representative for my area next week. My neurologist also has me doing whole genomic sequencing. Does anyone have experience with that?
I’ve also made an appointment with a dietitian to see about eating better. I’m having lots of trouble with my arms and hands in the last week. They feel so heavy, hard to dress, brush my teeth, lift a glass of water.
angie