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Momofone

Member
Joined
Jul 10, 2015
Messages
15
Reason
Lost a loved one
Country
CA
State
Ontario
City
Toronto
Hi everyone,
I'm so scared that I have FALS. As far as family history with the disease goes, I've lost 5 family members, including my mom (49y/o), my Gramma (69 y/o), and uncle (56 y/o). We have chromosome 9.

I've been having symptoms about a week now; I'm a 33 y/o female. In the past, I have had scares, as I am obviously petrified of inheriting this gene. I have not been tested. I have had sensory issues and weakness in the past, had a full neuro work up done, and my bill of health was clear.

Last week my left thumb started feeling funny. That's the only way I can explain it. It's always my left side that I have issues with. Then the top of my hand near my wrist began feeling tight. A few days after these symptoms presented, was washing the dishes and had to stop, my hands were exhausted. I tried peeling an orange the next day and I had a lot of difficulty. It was slipping out of my hand, and my hands were both exhausted doing this simple task. This is when I started to worry. I've had the tired limb sensation before but never have I not been able to do something. I am praying it's all anxiety driven, but I am so scared. I've booked with my family doctor, bit of course she is on holiday until October 21st. I'm going to ask her to send me for an emg. I have a baseline, so it will help get me some answers.

Any input would be extremely helpful for me, as I am so nervous and anxious. I have a 2 year old daughter and all sorts of horrible thoughts are running through my mind. Please help. This is going to be the longest wait to see my doctor. :(
 
You are young for c9 onset ( I assume you mean c9 orf72). It is not supposed to start before 35 according to the experts although I do know someone who was not quite 35- 34 and some months. I realize that is not complete reassurance as you are 33 not 23 in which case I would just say don't worry!

You describe feeling which is not generally the issue but some failure which could be - but could be a thousand things besides MND - you also said hands plural which is not the norm.

Does your doctor not have a locum? I say this because I know how difficult it is to be FALS and wonder and wait not because I am convinced it is MND - far from it.

You chose not to reveal your location beyond UK which is fine. Are you near any of the MND centers? And did you know there are c9 studies that you can participate in without learning your gene status? One of my cousins chose that route
 
Thanks for your reply, Nikki. Yes, C9orf72. Sorry, I'm in a bit of a panicked state right now, so I'm not thinking properly.
I did say hands, but it's my left hand that struggles and my right hand works extra hard, which likely makes it tire as well.

I am two hours out from the ALS clinic that me family all attends. He knows us all well, and has seen me previously as a patient, and as a caregiver. What are the studies you're speaking of? I am always willing to participate in anything that will help als research.

So you are C9? Are you symptomatic?
Thanks for being so kind, Nikki. I greatly appreciate your help and support.

I joined this forum over a year ago when I went through a similar episode, which was more sensory than anything else. Is this only for people in the UK? If so, I'm in the wrong place. I'm from Canada.

My doctors secretary said no one is providing cover for her currently but I could attend their walk in clinic if I wanted. 9 months I moved 1.5 hours away from her, so if I'm going to attend a walk in, I would just do it locally. My doctor knows my family history and is very thorough with me. Very kind and will arrange testing. The wait is just so long. :( Do you think I shoukd just go to an ER or walk in clinic locally?
 
Yes I am c9. Started symptoms in 2014. No the forum is not just for UK. Most members are in North America as am I. In fact this forum originated in Canada. Your location data threw me that is all

I know of no genetic studies in Canada - US and UK I do.

I would definitely not go to an ER! I thought there would be a covering doctor who could make a referral. An ER would not start a referral and I doubt an urgicenter would. Sorry
 
That's completely fair. I don't recall inputting that info when I signed up a year ago, but I will update it. I didn't realize it said what it did. lol very strange.

Thanks for your advice on not attending a walk in or ER. I will just have to wait until my appointment in late October. Seems like forever away though.

Thank you again for your time. I appreciate it.
 
Hi again, Momofone. Sounds like it's happening again just like last year. And again, it doesn't sound like ALS at all.

Good luck. May your house be passed over.
 
I appreciate your feedback, Mike. It brings me great comfort.
 
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