Recent content by affected

You could do a video-visit with a doctor surely. At least see if you can get an initial phone visit with a doctor and get started on advice. Google is never a good place to start.

Um what did your actual doctor say? Truly, you don't come and ask people with a terminal disease before you even see a doctor. Go see one and report back after.

Nup, not a chance of this being ALS is my thinking. Whatever it is, hopefully your doctors will figure it out. Please report back after the EMG, after all you have less than 3 weeks to wait for it now. We can't speculate on years of clean EMG's any more than that.

I didn't watch the video thanks but I'm sure as Karen says you are fine. Twitching means zip :)

Actually it would be awesome if Jim could give us an update on how Darcey goes with this, every few weeks or each month. If that isn't asking too much 💗

you are such a gem Jim

Don't worry, if you had ALS it would have shown on the EMG in April. You don't need to push this - ask your doctor what is next, don't try and lead things towards ALS.

yes, Cathy, dribble all day long was probably FTMI :geek: :ROFLMAO: :unsure: made me think of our poor koalas with chlamydial cystitis :cry::oops:

Oh yes, but you can remove the bag and do a shower or similar I believe. Not leave it stopped up for hours at a time (even though that is how our bladders work - fill, then empty, rather than dribble all the day long ....

That's right Kim :)

Hi Sam, Read this link a couple of times, there is a lot to take in there. https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/ You are not describing ALS and should always go back to your doctor if symptoms change or you have...

Huge congratulations on your lovely baby. Great news - not a single chance in the world you have ALS. Twitching means nothing at all, and all that stuff you feel have nothing to do with ALS. Cherry picking through stories online is never good. Have a really good read here, read it twice as...

We didn't, but I know some people do use these for a short time. They are good while you have core strength but weak legs.

I've had more than a week with no koalas on the property :( Finally Bullet wandered along and was in KimT's tree :)

I would actually say that it's important to do things according to what your father wants. Many PALS choose many different mixtures of strategies according to how they want to respond to their own rate of progression. Find what he wants and advocate hard for him to have that - try to avoid...

The only predictable thing about ALS is how unpredictable it is. We just can't answer these questions, I'm sorry. I know you want to know, but every person is different and there are so many variables. For example one aspiration when eating and a pneumonia could be life changing for him...

Sounds like you need to phone your GP rather than sit and stew over this as it seems pretty odd.

Please not more until AFTER you see a neurologist - then you can report what he or she says. You don't have ALS symptoms and we can't help you.

Must be scary, but it isn't anything like ALS, so you might want to get in to see a speech pathologist to follow this up and let your doctors figure it out.

To be honest - if you had really read that post carefully it answered everything you are trying to ask. Please leave it at that and see a doctor.

Let us know after you see a neurologist :)

You need to understand that we are not going to engage further and describe this to you. This is for your own sake. If we do, you will say, oh yes that's actually what is happening, or you will start to imagine it is happening. You don't have ALS symptoms. The people who are answering you...

Please calm down, let them do the tests, but with respect I want to suggest you maybe think about supporting your mum who is dealing with the actuality of having this disease and needs all the support you can give. When she is gone you won't be able to get the time back with her that you could...

Please understand that while you are very worried, your symptoms are minor, vague, and point to nothing serious, particularly ALS. My husband died of bulbar onset. You are then asking people who are actually dying and may be extremely paralysed and breathing with the assistance of machines to...

I created video of tasks with Chris. I'm not allowed to link to where I have it all online but you can hopefully find it through the about section in my profile.

That bowl is brilliant!

Um you aren't really at increased risk, your dad had sporadic ALS. You can choose to future worry or not, but I'm glad we could answer your questions here. Only a doctor can help from this point forward, I wish you the best in a long life.

Great - but may I politely suggest that before posting such a long post again you consider that our members who use eyes or a toe to operate their computer, and breathe with the assistance of machines, don't need to read such long posts when that resource we have answered you before you typed...

I had a plastic sleeve folder with instructions, including pictures where I could to help with things in as much detail as I could. Our staff found it really helpful, and used it when training new people as well as just reminding themselves of things. Also easy to update as things changed with...

Great news, please do read the link provided. Overall not a single ALS symptom!

Swallowing issues are certainly an initial bulbar symptom, but your descriptions don't really match up with what usually happens. Hopefully you can just stay calm and take care when eating and drinking - tuck your chin before swallowing helps. Looking into neurological issues for yourself is...

Oh that's painful :( I also wondered that you were quiet and I'm so sorry you have to suffer physical pain just now. Did you say you are being injured during transfers too?

Agree with Karen, it looks great! If they loan them, get one and try. However, it's really important now to get solid plans in place on how you are going to handle toilet situations as your strength continues to decline. It's so hard to face, but the more you can plan and put in place in...

Please go back to the post I linked you to when you first came here as it's really important realise that your answers are in there. When you have health concerns, or think things have changed, first step is to go see your doctor.

This is definitely something to take back to your doctor who can examine you and decide on tests needed. This isn't how I've ever heard of ALS starting, so put that out of your head and work with your doctor to solve together. All the best.

We only support ALS here, it is not a general health forum - you need to take this all up with your doctor. All the best sorting your health issues out and getting back to full health.

The possible option of renting your home out while you rent another suitable place could make a lot of sense and be a faster alternative with the option for you to sell or not at your own pace later.

I'm in full agreement - restricting fluids is never a good strategy, and taking risks, especially when alone is really to be avoided. Falls can be so life changing. My Chris was in awful pain for the rest of his life after one fall because you often simply will not heal properly with muscles...

and always listen to everything Steve says about wheelchairs, there ain't much he don't know in that department!

Sorry you are here. It may be worth seeing if you can get her to describe how she wants to see things happen for her. With her speech declining, it may need to be done slowly or using paper or a computer. Does she have her legals in place - her living will and POA? Maybe she would be happier...

The best advice is to let this go now - you have asked which is good, and we have given time answering clearly :)

So sorry about your father. It is quite common for adult children to believe they are getting symptoms when they are only really twitching at a time of stress. You have no real symptoms and have clean tests, so I hope you can relax and enjoy the prospect of new life. All the very best - as...

Such important things being said in here and as CALS what we discover and learn to deal with is that no matter what anyone says, we have to accept however our PALS decide to live and die this out. Some of them have FTD, some just have cognitive and/or emotional changes, some just respond...

I think a wheelchair van is what you need to look at because you won't always be able to transfer him into the car. Also you can only haul the chair behind in good weather. A van will see you right through and you can purchase them second hand. Lots of threads here concerning vans if you use...

This is a good last question to ask - no not a symptom of ALS at all. Please try and let this go as you may have something going on, but it isn't ALS. It is also worth reminding yourself that you wouldn't develop ALS at the same time as your mum. Let your doctors guide what needs to be done...

My husband was bulbar onset ALS and you are not even remotely describing how it starts. Before you jump way ahead, let your doctors decide how to proceed with what test in order and follow their advice. You are being hyper-vigilant and this accounts for much of what you are describing, so let...

Bullet napping in KimT's tree :)

Go back to your doctor and ask for help with your anxiety, you know you don't have ALS. I hope they help you. We sadly cannot.

Please go see a doctor - there's nothing we can do, but a doctor can take you through everything necessary.

We already answered you I'm afraid - we can't keep saying the same things over and over. This is our answer- read it again at least twice so you absorb it all. https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/ The odds of...

You already know you don't have ALS, and we've given you a lot of time. Go see a doctor if you have concerns. All the best.

I'm so sorry. My Chris was pretty much never left alone. Sure he was given alone time, and space, but not simply at home for hours on end alone. I would go outside gardening and mowing and regularly check on him. Occasionally (a handful of times) I would race to the shops leaving him alone...

If you read that post from Karen again and really absorb it all it will help you a lot. You don't have ALS symptoms :)

Spotting koalas is definitely an art form .... ;)

The thing to do is go back to your doctors, that is the only possible advice.

You were asked to come back after 3 months and tell us how you went with your doctors. You don't have any progression beyond feeling things and reading lots online. You can read all you want elsewhere, but you know already that the below link is our official position and we won't sit and argue...

thanks Nikki - seems awfully insensitive this month in particular being ALS/MND awareness month.

I'm on a photography website and was horrified today to see a photo taken by a nurse in a nursing home in the UK today. It was of several people doing an ice bucket challenge. The text accompanying: "This is something that the managers at our care homes are doing as a bit of light relief for...

We also might see more posts here now as Statius@ has asked for a tree. I knew which tree I was going to choose as it is one I've been seeing Hugo in a bit lately. I couldn't put the label on the tree yesterday however because when I came along, indeed Hugo was in it! He rarely spends 2 days in...

Finally I've had 3 days in a row with 2 koalas on the property. So strange when I had been at a point of expecting at least 4 on any given day and now I'm like wow I found 2! With thousands of trees however, it has meant so many less chances of finding one in a PALS tree. I'm sure when the...

You are both missing out on things you could be enjoying together and that truly sucks. My Chris was very different, and put all his energy into insisting on things like walking to the toilet and back (would take 15 minutes, inside a small house), but then had no energy to come for a walk, or...

It doesn't sound like you have read our post in this link which you probably need to read twice as there is a lot to take in. https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/ You aren't describing ALS at all with all the...

If you try the bipap more during the day and it helps, then the answer is you need it more. If it doesn't, I'd really recommend discussing your settings with lgelb as it could make all the difference. Horrible feeling to be short of breath - don't feel you just have to put up with it.

You are definitely not being 'negative' and I really agree with ARCG that the huge issue with the 'think positive' fallacy is that it invites blame. If only he had tried harder, or if only she had supported him better or whatever. It is a load of bunkum and it makes other people feel better...

No offence mate, but instead of asking Laurie to take more time - please read the post I linked to you as it answers this question. Please realise this is a website for people dying of a terminal illness. You do not have ALS, no way.

You must start here and read it through twice, keeping in mind you have a medical degree. https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/ All your questions are answered here - you don't have a single symptom and I think...

I'm so sorry you are living in such a high covid-prevalent area. I can tell you that there is nothing of ALS in what you are experiencing, not a single thing. Keep working with your doctor and stay away from sites like this, they are not going to help you in this high anxiety time.

So sorry about your mum - please go back to your doctor and discuss again as this is definitely not ALS. You deserve to get well again. Posting here is the worst thing for you, so get a tele-appointment set up and start working on your anxiety as it can ruin your life.

Please slowly read this through twice - there is a lot of information here so it takes some absorbing. https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/ You are not describing ALS at all I'm really please to say. Dents...

If your son kept asking - do you think I have ALS, the doctor may have referred him for this to appease his worries. We see this often - someone comes here and asks a lot about ALS. We say, this doesn't sound anything like it. Then suddenly they say - I'm being referred to be checked for it...

Read this through twice to understand you don't need to be here (congrats!) https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/