Hello Everyone

[DW7186]

Hello everyone,

I was given a likely MND diagnosis in September, referred to MND clinic this month and received diagnosis of MND Flail Arm Syndrome.( Am based in North East UK)


I had posted a thread:

Motor Neurone Disease/Hirayama Disease/Brachial Neuritis

Hello I have read the rules before posting and am hoping to find someone with any similar experience. I was referred to rapid neurology after severe atrophy of my left shoulder which then progressed into the lower arm and hand.After nerve conduction study showed denervation of the motor nerves...

www.alsforums.com

in could this be ALS. It's been locked so I can't reply on it. Just wanted to come back with an update and introduce myself.Still reeling at the moment,so apologies for that!

Best Wishes to everyone,Denise

 

[Nikki J]

Sorry to hear it was confirmed. I hope for very slow progression for you. I also hope that you are able to access good resources. In general the UK is better at this than the US but I understand access has been spotty recently

Keep in touch

 

[DW7186]

Thankyou Nikki! My area does have an MND centre,I've been told by the MNDA that's a very good thing.

Am going for follow up in 3 months just in a real state of shock,hoping I'll snap out of it soon!

I will, best wishes,Denise x

 

[julianuccikelly]

Hi Denise. I was just diagnosed this summer, so far PLS so lower motor neuron symptoms only. It feels like I have quite a bit to learn. So good to connect. Wishing you well, Julia

 

[Nikki J]

Shock is completely normal. Even I , a known gene carrier with symptoms, was shocked. It took me a couple pf weeks to begin to function, longer to get to a new normal but I think it was relatively fast for me as I knew my family history and my genetic status.

Hope you have a lot of support from your centre and the mnda

 

[lgelb]

Welcome, Julian. I think you meant "upper motor neuron symptoms only" as would be the case in PLS.

I'm very sorry to hear the flail arm variant was confirmed, Denise.

We are here to support both of you however we can.

 

[julianuccikelly]

Denise, I read your other thread. If it helps, my road to diagnosis was very similar. I had trouble with my right shoulder and was prescribed physical therapy but made little progress. That was in 2018. Shortly after my mRNA vaccine in the spring of '21, I started to experience spasms in my arms and legs. I was losing weight and had my thyroid checked. My endocrinologist noted that I had a tremor in my hands. Neurology said it was essential tremor. But I kept losing weight. Finally at an annual checkup I said to my physician, please look at my weight chart. We need to find out why I'm losing weight steadily. So the tests began. My endocrinologist is the one who had me see oncology, rheumatology, and neurology again. But this time, they could see the atrophy in that arm and a small tremor in my tongue. MRI and EMG were ordered and we were referred to the Neuromuscular Research Center in St. Louis, where they did the EMG again and a full workup. I'll have my 3 month check up next week.

I feel like the biggest battle has been keeping my weight on (since February!) and trying medications to see what my body will tolerate. I know it's the start of a long road. I'm just trying to learn as much as I can and assemble the care team around me that I need. I'm interested - what does your ideal care team look like?

 

[DW7186]

Thankyou Nikki and Laurie for the kind words and support,it's much appreciated.

Julia,lovely to meet you aswell despite the circumstances! Very helpful thankyou... aswell as the weight loss I was and still am under the care of Endrocinology too.

I wish you lots of luck with the weight, I haven't been able to get mine back up (ongoing 3 years now)

My care team, well I don't have an ideal, I'm pretty introverted,before this my long term plan was to move to the Scottish highlands with a ton of animals! Lol! My hospital has an MND clinic with a multi disciplinary team which was where I got the 'second opinion' full diagnosis.

What about you?What's your ideal?(aware things are different in USA) Also all the best for your 3 month check up!

All the best,Denise

 

[julianuccikelly]

Thank you for the well wishes, Denise. The 3 month was mixed. I gained a pound! And strength tests showed additional leg weakness. But other strength and breathing was even with the previous check-in. I am showing both Upper and Lower neuron signs now, so status is confirmed as ALS. Now, I'm working on that care team. For me, it's spouse and children, longtime girlfriends, my siblings. I started physical therapy (very gently) and speech therapy to voice bank. I'm also seeing a counselor to talk through the shock of this. It still feels like a lot to process.

How are you managing?

 

[DW7186]

Hi Julia, a pound is still a gain! I'm sorry to hear it was mixed for you.
Sounds like a really supportive care team you're putting in place.That's positive.

I completely understand about the shock, am feeling very much the same and seeing a therapist. I'm trying to schedule happy things to do in the next few months like little breaks away and treat days and trying to focus on anything but this! But I realise I can't ignore it either so it's a tough balancing act.

Wishing you all the very best for now, take care