ALS an insidious disease

[Suej]

I have just been diagnosed and I am not able to walk or stand or do much with my arms and my trunk area is weak too.Going down hill very fast.

 

[GregK]

Mod note: moved to Newly Diag.

Hi Sue,

I am sorry that you have fast progression. But you're not alone.

 

[Atsugi]

Sue, welcome to our forum. I trust you'll find some solace here, good advice and maybe an internet friend or two.

 

[lgelb]

A sad welcome, Sue. We have other BC members who I'm sure will chime in. Please pipe up with anything our little brain trust might help with.

Best,
Laurie

 

[Vincent]

Sorry to have to meet you here. ALS BC is a great help for patients and families. You are among friends.
Vincent

 

[Suej]

Thank you to all the people who responded to my post, It is comfort to know that there is support from other people that have als.

 

[soonerwife]

So sorry to welcome you here Suej. You will find awesome support here.

 

[KimT]

So sorry, Sue. Feel free to ask questions or just vent.

 

[scaredwifetx]

Sue, hugs and prayers. Any time you need support want to vent or just be among those who understand and care...just come on in.

 

[Suej]

I have joined the als society in BC, waiting for my power wheelchair, hope it comes soon. I'm in a lot of pain ,anyone else in pain? I walked for the last time on Oct 21.I stuggled with a walker for for 8 months, did not have any stength left.I believe I have had this illness for a few years already but did not get the right diagnosis until it got very bad. Will be getting a lung capacity test soon, hope that goes well. Anyone else have leg onset als?

 

[scaredwifetx]

My husband had foot drop onset. Like you he is using is legs as long as possible. He cant walk very far and must use a walker. His leg strength is very weak. He was diagnosed a 14 months ago but we also believe he had symptoms for at least one to two years before diagnosis.

 

[Lkaibel]

Sue, glad you joined us but sorry this is happening to you.

My husband had foot drop also, but it was a little complicated. He did trip and fall and injure a nerve in February. The nerve injury itself can cause drop foot. However, it was not until April 2nd that we noticed he actually HAD drop foot, and so the trip to diagnosis began. To this day, they are not 100% sure if the drop foot was caused by injury or the other way around, because the drop foot at least partially recovered, he can almost fully raise those toes up now.

It is as likely as not though that a leg/ankle weakness, if not a full drop foor was still the cause of the trip and fall. My husband has been one not only very fit but graceful man. I remember friends watching him get up on the roof of our garage just in the summer of 2015 and saying " Wow! Just like a cat! Are you sure he is 65?" So the fall itself in his case was a warning sign. In my case, it would be just another day as I clumsy for sure.

He was diagnosed June 30th. We were already getting towards an ALS diagnosis when he developed weakness also in his left hand you could see on June 15th which sealed the Dx even before the Doctor declared it in my mind.

Heavy cramping in his legs with big physical activity starting in Fall of 2015 may have been his first symptom. Now, he uses a cane some of the time, uses a bath chair, wears leg braces and has lost a lot of dexterity in his left hand (can't type with it anymore) and has pain in both hands, sometimes severe.

I would not be surprised at all to see Brian using a walker in 3-6 months. It depends on how progression really goes.

 

[KimT]

Sue, Pain has been my worst symptom. Mine started with cramps and fasciculations in my left foot, then moved to me left leg. It took them a whole year to diagnose me because I was strong. Today I have horrible pain in my trunk, mainly in my back. I've fallen several times and sprained my already weak ankles. I can still stand and up until my last fall I was walking pretty good. My "good" ankle just twisted and down I went. I am on constant 24/7 pain and the pain is causing depression creating a cycle. I'm having trouble getting used to the Trilogy and actually sleep better without it.

 

[Firefighter58]

Hi Sue sorry to meet you but I suppose we are all here for the same reason. Enough said about that, we go on enjoying life as best we can and most of the time it is good. If your in pain speak to your doctor, mine is very good and my medications keep me pretty well pain free, all though I have times in the day where I fall asleep for an hour or so but that is fine, the rest of the day I am pretty much normal other than the fact that I can not walk or talk. But I get down on my knees and still do most things, I repaired my generator up at the cottage last week and set my pump system and furnace up for the winter. It is all down in the crawl space so I do not have to stand up, just crawl around. There is no use feeling sorry for ourselves just carry on as best we can.

Al

 

[Suej]

Thanks to all who are responding to my posts. I feel for you all. The foot drop is severe in both feet, no calf or thigh muscle left. The falls have been many. I live in a small town and I know all the paramedics they have all picked me up off the floor.I'm in the hospital at the moment.Arms and hands are not working very well getting weaker every day. Don't have any bulbar symtoms at this point. Have a very positive personality which is a good thing, taking one day at a time. Cheers Sue.