Recent content by Darius

I will note this. Thank you Laurie @lgelb I did see a physio a while back, whenever I had pain, but since I've been referred to the MND clinic, I've not seen much of them. I think because of my familial status, they're more zoned in on MND. And I'm not familiar of any pain/wasting syndromes...

Nikki, slightly tangential, but I have finally been contacted by the GENFI study near me and I've signed up to aid with research (they open up later in year). It doesn't mean much for my diagnosis, but I'm glad I can participate going forward. One researcher who has also got in touch, sent me a...

Still in waiting, done the counselling - voiced my wish to do the blood test. But they won't let me back in the building until this is over.

My initial thread won't let me update there. I am creating this one to provide updates, as asked. Just wanted to thank Nikki for her help so far. Background: M, late 20s. 4 known cases of fALS/FTD due to the c9orf72 gene in family. Currently a CALS for my mother who has leg onset. I've been...

Kept off the forum for a little while whilst I focused on the family. However when I'm around family at this moment in time, it feels like I'm having to keep a lot to myself, and that can be a little isolating. I don't want to mention it to my mum or anyone else in the family as my mum's...

Mum's leg is starting to get quite bad, she can still just about make her way through our park walks with lots of bench stops, but I'm wondering what I should make a priority in case this relatively slow lack of progression hastens up. My brother and I are trying to buy a house so she can move...

Hi Nikki, Yes it is proving somewhat challenging, but I'm utilising the MND charity for support. What I can't bear is the thought of this disease starting in me so early, that's such a hellish scenario to consider. Honestly I'm open to this coming for me in my 40s/50s, but I pray it isn't my...

Hi, Just wanted to ask two questions, as my weakness has gotten a lot worse, but as I'm trying to remain objective and scientific I want to consider other logical reasons/remain level headed. After a few months of neurological back-and-forth, I feel as though the symptoms I'm experiencing...

Hello, Posting again to provide a thorough update, to provide a breakdown of what has happened since my last post, and tell you what the neurologist has said. I'll also leave a couple of questions below. If you could help me with them I'd appreciate it. For recap sake, my family carries the c9...

Nikki, thanks. Just to answer your questions. I had a very brief video consultation 7 days before the EMG was done. Neurologist told me to take off my shirt, and he saw atrophy in my right bicep and tricep. He asked me where I felt weakness and I told him in that arm. He also asked me if...

I was told to keep people updated here, so that's what I'm doing. And I continue provide care to my mum to the utmost of my ability. I'll likely be consulting people here over the coming months as my care for her progresses. I have three questions today that my relate to the test results that...

I visited the hospital last week, and had an EMG and nerve conduction test carried out. Upon completion, the EMG technician mentioned he noticed "subtle differences" between my right and left side. And I'd have to wait to speak with my neurologist about his analysis next week. I rang my GP to...

I take both of your collective words and advice seriously, and apologise if the update message appeared disrespectful. I do believe focusing on my mother is of upmost importance right now and will update you with regards to my next visit to the hospital. I also have a genetic counsellor...

Hi, Since my last update I have found out the following, and had a neurologist consultation. I am male, 26, in a few days I turn 27. Family background My mother and great auntie were diagnosed with MND. My mother quite recently in 2020, at 65. She has also informed me that the c9 gene is what...