Recent content by affected

Yep, we stopped going to clinic, even with rapid progression we chose who to see and when. It can be overwhelming if you feel like you are on their schedule not your own. @vltsra Don't people love to give their advice? I often just smiled and said thanks, and then kept contact to the minimum...

I sent you a link when you first started this thread and it totally answers you. Please, back to your doctor, it is not appropriate to keep asking these questions of terminally ill people. Only a doctor can help you.

@JackieZ we have a member here lgelb who has worked with a lot of our PALS to tweak their settings. This may help you and she would work with you privately on this. She may have mask suggestions you haven't tried yet. Unfortunately though, if you have no use of your arms as you say when you...

Oh Jessie, fly free and bold, you deserve to soar 💜💙💚

looks like a bot creation Al

this has to be the best thread of story-telling we have ever had on this forum Steve! and I agree with everyone, Kevin's responses just bring the story to new levels in between each instalment. Talk about on the edge of the seat!

You don't mention a doctor examination at all? Surely you have consulted a doctor, been examined and had advice given on your particular issues? No matter what you read elsewhere, the post I'm linking to is our offical position. This was written in great detail to assist you and so that our...

PICNIC Plastic is causing nightmares, indefinitely circulating CIRCLE

Please just be aware that oxygen on its own is dangerous for him. Remember PALS die from a build up of CO2, not a lack of O2 and so giving O2 can cause even more CO2 to build up. I'm so glad the bipap is helping and he is adjusting. If he truly needs extra O2 (and his pulmonologist is the one...

We will take every good day thank you very much Aunty Celexa! And GB may have a good bearing too. Helping them settle into the new home and babies is all about living and that is a good thing to be focused on. Great to hear from you Sue 💚💚

Oh I love the shot of tequila and some perfect Queen to lift the spirits in his last hour. I wish you peace as you find yourself on the other side. This, I hope, will truly help you deal with the grief in many ways 💚💚💚

@krnNdug I remember you!!!! so good to see you posting!

Unique cases that don't match our Read BEFORE posting post, never turn out to be ALS. That's why we created the post. Please do work closely with your doctors.

No it's not. I hope you read the post you are directed to read before posting. Continuing this with the terminally ill will not be productive nor appropriate now.

I'm so glad her story could resonate with you Lenore.

If you read the link I sent you, there is nothing at all textbook about your symptoms. I will just gently say however - people with no medical training will read lists of symptoms and imagine they are experiencing them because they don't understand them. I don't mean they are imagining...

Your doctors are highly trained and know what they are doing. My husband was bulbar onset and it is nothing like what you are describing, not a single thing. So you must let that fear go, and let your doctors work with you. You must be consuming so many calories with your constant state of...

great stuff, so glad you have done this!

This is our official stand - anything else you find outside of this is not. You need to work with your doctors, if they say nothing is wrong, what could you want from us? I see nothing concerning in your description...

I would like to assure you that you are not noticing the weakness and fatigue before failure, you are trying to convince yourself you have a terminal disease without having the hallmark symptoms. PALS are constantly shocked that they feel totally normal, yet their body won't do what their mind...

twitching means nothing. please go back to your doctor if you are really concerned and work through it medically. Laurie gives great advice, but also remember, this is a forum for terminally ill people. We are happy to answer your questions, but we can't hold your hand every time you get...

that's great, the buttons really make life so much easier don't they? I think this respite trip is brilliant. While he can have that time to himself, take it. You both need it! Recharge and enjoy.

those little things can hit the hardest, especially when unexpected 💙 I'm so glad you were out with a friend that evening tho

Hi John It doesn't sound like ALS swallowing issues, but your GP can send you for a barium swallow test - that will really sort this out fully for you. Have a good read here to understand why sensory symptoms are not part of ALS. It's really detailed and helpful...

you live a soap opera!

Please read this, it answers all your questions. You have an appointment very soon. https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/ Let us know how things go after the appointment.

Nope, not how ALS starts (and my husband was bulbar onset). Twitching means nothing. Let your doctors do their job, they have the training. You can worry yourself all you want by googling, but we can't play the game with you here. Let us know the results of your doctor tests and examinations...

You don't seem to have read the post Nikki gave you a link for as it addresses all the new questions you are asking. Please read it again and wait for your tests. I'm so sorry you are scared, we can't do anything more.

Baby food is just that, food for babies. Does your dad have access to a dietitian who can organise help with this? He could have the meals everyone else is eating blended for him - I blended my husbands food for him. Bladder control is very often affected I'm afraid, but usually it is that the...

Twitching is a symptom of ALS in the same way that a headache is a symptom of a brain tumour. On its own, MEANINGLESS. If you are concerned the doctor saw something, go back and confront them. Don't try to pick it apart here.

MINCED Mice in nightclothes cause exceptional disruptions MICE

Twitching means nothing 😊 I am totally with Nikki - why would you possibly think after one week of a vague symptom that you have a rare terminal illness? Actually that is rhetorical. Please see a doctor, you don't say anything about having done that, and surely that is the first thing you...

I had almost forgotten about the hope we had in diaphragm pacing for quite a while and so many were trying it, then the devastation as it proved to actually hasten progression of loss of breathing muscles. Important warning of the potential to not only not help, but to harm.

It can take time to get used to, and the settings may need tweaking or a different mask tried. Many find the nasal pillows great. A great way to start is in a comfy chair, watching an enjoyable show or movie. Leave it on just for 10 minutes or so, even if comfortable, the first couple of times...

The link I gave you already gives a long list of possible things that could be wrong. The fact you did not stay in your original thread tells me it is unlikely you even opened that link. Please realise we are not doctors, but terminally ill people or their carers. Yet we took a lot of time and...

PALS don't feel any of these things, they simply fail to be able to do things and are so surprised that what feels normal won't work. Twitch means absolutely nothing. Please either trust your doctors, or go and get a second opinion. But only a doctor that is examining you can help you work...

If you read the pinned posts, then in your heart you know that you have not described ALS in the least. 2 neurologists have told you the same. Please keep working with your doctors to find the cause of your fatigue.

PALS don't feel any different at all - they don't like joints are loose or whatever. They are totally surprised that they simply can't do things when it feels like it should simply work. This is great news when comparing to your symptoms. Please follow the advice and work with your doctors as...

Hey Banksy, twitching means absolutely nothing. I'm thinking the 3 neurologists have suggested to you that what is happening is benign. You can truly just get on with your life now.

@Blu - welcome to the forum. I'm just wondering, your profile says you are a PALS, yet you re posting in the CALS section about your husband? Maybe you just need to change your status to CALS? That cream is really good for bed sores. It is important to try and prevent them forming at all...

Viv, go back to your doctor. You have worn out all that can be offered here. Mods, please close this for Viv's own sake.

Sorry Viv, we do not compare notes with people in this section and asking for that is really quite inappropriate. Denervation in 2 muscles does not mean anything like ALS, not even close. If we compare symptoms, people start to believe they develop them. So the best thing is: you describe what...

Scared, if your parent is not displaying any sign of ALS, and no one else in the family has ALS, you can be pretty sure your grandmother was a sporadic case. Most cases of ALS are. At any rate, the chances of you developing familial ALS at your age, while the parent who would have passed on...

My husband had bulbar onset ALS and I can assure you that you are not describing a single onset symptom. I'm not saying nothing is wrong, just saying that we are agree with your doctors that there is no ALS detectable. I'm sorry but as a terminal illness, you can celebrate that the thing you...

Hi scared, I'm sorry you are going through this. We wrote that important post because that is our offical position, and we know you might read any number of different things by googling elsewhere. However, that is why we wrote it, so we don't have to keep justifying what we know from a huge...

I'm so sorry for this diagnosis, I am glad you have reached out here. My husband was also bulbar onset and quite rapid. Do you have palliative care or hospice there that could help her with her wishes?

Oh Jessie you are a true inspiration, and through your words here your inspiration will live on and help many for as long as ALS continues to take our best. I wish you so much peace. Thank you for all you are.

In short, no what you heard about EMG patterns is not the least bit correct. Your latest EMG might not be normal, it is not an EMG that indicates ALS. Truly it is time to celebrate and get back to your doctor and say, ok no ALS what do you think we should do next. Your doctor can work through...

I'm so sorry you are experiencing these things. You really need to get a good primary doctor and describe all your symptoms and let them work out a diagnostic path for you. It is nothing like ALS, not even a bit, but only a doctor can examine you and take this a step at a time. If you won't rest...

Hi Kevin, not sure if I am reading you correctly - you started with stuff happening, and after some months those things have lessened considerably. However you have somehow decided you must have a rare terminal disease that nearly always affects older people? Please read this really carefully -...

Hey bcc, thanks for the update. In the link I gave you last time there is a really long list of things that people are often diagnosed when they really thought they had ALS. Please understand, this forum is for people with ALS and it consumes us. That post is really detailed so that we can...

remember that twitching means nothing, either at rest, when using the muscle or during an EMG

I found her and I remember her Kevin! She truly was a lovely soul, and sad loss for the world 💚

Yes indeed, if Chris got frustrated everything went to pieces fast

I agree with Fiona totally - contact your doctor and ask your concerns. You probably know that while we sympathise with your situation and fears, twitching without clinical weakness means nothing.

I'm so sorry for the loss of your friend. You said she was a member here, do you recall her user name? Every loss is so hard to accept as this disease marches on 💚💚

The biggest thing you need to get clear on is - twitching means nothing. Like really, without actual failure, it means not a single thing. Just stop and let that really sink in before you say: yes, but ... It means nothing. Let us know after your appointment, but coming here between now and...

The EMG does not seem to suggest anything that would lead to you thinking ALS. Please let us know once you have more results after the appointment coming up.

Day at a time RMT, don't future worry what will come. Hard I know, but god knows it's all hard enough now, don't add to it. We don't know how quickly FTD will progress if that is at play, so try to keep on as you are 💚💚💚

HABIT Having a blast in town TOWN

So glad you got away RMT - hopefully he can build on this to relax more next time, but it's hard when being involved in 'doing stuff' is what he enjoys most. There is a language variant FTD. You can research it a little or just wait and see, but even just being aware now should help you cope...

No, no way, not at all. Your doctor will give your EMG results and help you through your anxiety. Please take my reply as enough, it is not appropriate to continue this with terminally ill folk. All the very best.

BUGLE Black underwear gives lasting effects LAST

I hope you give a rest to this now. You don't get it still - no matter what people say their 'first symptoms' were, those diagnosed with ALS tend to have clinical findings (which indicate failures) from their first visit. You are not presenting with clinical findings, but are describing all the...

nope, this is not ALS by any stretch of any imagination. Please go see a doctor and discuss your concerns 😊

Let us know what the new neurologist says, but I'm trying to figure out what you think is wrong? Let me say why by quoting you: The conclusion of the EMG report mentions "unspecific findings", suspects myogenic lesion... neurologist gave me a diagnoses of tetanus... Please read here really...

note @Bestfriends14 the appointment is in July, so just a few weeks away. Chuckles, there are still many options to investigate, and I truly hope whatever is going on is identified quickly and can be treated. Please let us know once you have EMG findings. Try to make the most of your time in...

My husband was bulbar onset and he definitely experienced an inability to do things he once could do. Differently to how bestfriends husbands inability to do things presented, but an inability to do things nonetheless. We are not going to be argued down, or into a corner on this. Please, just...

Totally second that he needs bipap, not oxygen or cpapa. It is really hard to find somewhere that can care for a PALS, their needs really need more personal attention.

We found an alternating pressure mattress was pure gold for Chris as he had so little ability to move. Roho when out of bed, checking the pressure of the cells every day before using was the next bit of gold. Then of course skin care is just as critical no matter what combination of mattress...

When I said pushing himself, I meant pushing through breathing difficulties. The more he can use bipap early, the less he is pushing his breathing muscles 😊 (bipap now may help him continue working far longer)

If you read here, you will see why you are not describing anything that would ring ALS alarm bells. I hope this helps you stay calm and work with your doctors. https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/

Nothing alarming in what you write, so far as ALS, but I think I can read between the lines that you know that. Let us know what the doctors say, that is truly the place to start, rather than here. All the very best.

Hi Becca, No that is not spasticity I'm happy to say. Twitching means nothing which I'm sure you read in the pinned post to read before posting. The neurophysiologist will be a good person to ask all these questions of as they examine you. All the best, there is nothing alarming in what you...

Are people telling you that you sound drunk all the time?

I'll just agree here, if you truly did read the pinned post then you know that you don't report the important ALS symptoms, and that twitching means nothing. I can only agree, keep working with your doctors, they are the only ones that can work through a diagnostic path with you as they examine...

Hey Samkl, it was a great thing to bring up. I rarely talk about our health system here as it is so different to others, but I felt it was worth explaining in a bit of depth to address what you said well because it's really complex. It is really quite impossible to compare across some...

It really is incredibly variable and we can't predict. We do know that starting bipap early can really help him not overuse the breathing muscles and could slow progression a little. Definitely pushing himself can speed things. We have members here that have been using bipap for years, so it...

Jim if you approach Fiona she will pass your email address along to Ruth if you want to help privately. Fiona has often helped me with new CALS in the past 😊

I'm so sorry for what you are going through. You don't have classic symptoms that jump out at me, but only someone examining you can really say anything much. It was a bit irresponsible of him to say things like that MND comment out loud when he is not in a position to diagnose you. Of course...

No, jerking, shaking, pulsing, tremors and twitching without clinical weakness are not a sign of ALS.

I really think these are questions for your doctor. Yes you would have true clinical weakness if you had atrophy confirmed by a doctor and it was because of ALS. You are not describing any pattern of ALS onset, but we can't tell much by text. Your doctor can examine you and test you and advise...

Thanks for being concerned for your friend, hopefully you can help her work through this. There are so many other diseases that could cause all this, and ALS is really not one of them without and actual clinical weakness. Try reading here, it should help you help your friend to stay calm while...

@Diane H yes indeed I was asking about you, I'm so glad to see you post. I love that despite all you are saying, you can say it with such elegant humour. Thanks again for your ALS from both sides website that has helped and continues to help countless thousands of PALS and CALS navigate things.

You are not reporting anything failing. But please, see a doctor and let us know after that.

Nothing like ALS. Unfortunately diagnoses don't always happen as quickly as we want, but keep working with your doctors and report new symptoms to them so they can direct the diagnostic process. Go back to the read before posting message here too as that will help show that ALS is a disease of...

You should always see a doctor before asking strangers anything for sure. That will be to find what is going on, not to rule out ALS, it shouldn't even occur to you. Read carefully here too...

CRICKET Constantly racing in circles keeps everything torrid TORRID

twitching means nothing. please go back and talk to your doctor about what is happening, show them your walking gait and ask what they think. also read here, read slowly and read through twice as there is a lot of information...

please go back to your doctor, it's not appropriate to seek comfort for anxiety from the terminally ill

the sticky posts suggests that sending us photos is pointless - please go back to your GP if you can't wait for the neuro appointment and get help there. all the best, I know waiting is hard, but we can't do anything here.

nope, twitching on its own means nothing as we have said. maybe make an appointment to see your neurologist, but we really can't do anything more as we are simply being asked to repeat ourselves. all the best, please join a BFS group and discuss this there

No. Leave it now to ask all these of your doctor at a physical examination.

Let us know after you see a doctor, they will know how to examine you and what is a true concern and the directions to take. Don't ask if you have ALS, let your doctor work out the diagnostic path. Good luck.

I have never heard of ALS onset or progression happening this way and I'm pretty sure you haven't read of another case like this in the reading you have done here (not one that turned out to be ALS). I really hope they find some answers for you soon. Has a neuromuscular neurologist said they...

Not sure if you read this one, it should show you clearly that what you describe doesn't match anything like ALS. Give it a really good read through. https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/ Your EMG gives a...

Go see a doctor, that is what they are for. It is not appropriate to post long amounts of text to terminally ill people to try and pick apart and figure out. Please, get help from the appropriate place.

Having a friend stay V, and paying for care is probably the perfect mix. The friend can then be a friend, give company and the reassurance of someone he knows, and the paid people can do the hard yards. You do need these breaks that is for sure!

NEWBIE Now everything will be incredibly enigmatic ENIGMA

It is ridiculous how quickly 2 weeks rolls around, so I'm really glad they have changed this regime. It also means you unlikely to end in a crisis as you should order well before you are running out so that if there is a delay of some extra days it is no problem. I'm so happy that you are...

What I found the best when learning the hoyer was the OT demonstrated it first on ME. That way I got to actually experience all the feelings of the sling, straps, going up into the air etc. It really helped me understand what I was doing with Chris. Jim if you deliver that sling maybe you can...

just wait if you are so worried about the first neuro, it really isn't all that long, though I truly appreciate that it seems so at the moment. in the meantime work on mindfulness and doing all you can to look after yourself and live. you won't get this time back regardless of any or no...

Mary if you do a search here on RIG in the title you will find lots of great discussions that should help. Twilight anaesthesia I believe is normally used, more as a relaxant than anything, but full anaesthesia is used for a PEG and you can't use bipap as they have an endoscope going in through...

Yes Laurie that is totally correct. Also we have what is called a 'public health system' and a 'private health system'. Some hospitals are 'public' and some 'private', but to be confusing both can and do take both public and private patients. Mostly that dictates how the hospital is run and...

There have been higher profile people with money in Australia that have had a trach and vent.

Yes it is nearly unheard of for PALS in Australia to have a trach. You would have to really have the financial means to pay for assistance, it is not covered under medicare nor private insurance. It is not perspective so much as we have so much free or very low cost health care that other...

We explain really clearly here why the EMG was not done too early. Please return to your doctor for help. https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/

Definitely perceived weakness is not ALS. Lots of people report neurological symptoms post vaccine, so hopefully you can work through this without continuing to add too much stress.

Truly we can't say that vague symptoms sound like ALS or not. You are not reporting any failure, so that's a good thing. 3-4 weeks is really not very long to wait (I know it feels long), and you can do lots of mindfulness things during that time. Regardless of any diagnosis or not, you won't...

Thanks Brandon, your story is really important to have recorded here. All the very best.

Does anyone know how Diane is doing?

@Jrzygrl I love your son for that too!

Read this through really slowly and carefully as it will help you sort out what you are feeling compared to what ALS is. I hope things resolve quickly for you. https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/

That's great John, fingers crossed that if it is easier for you to purchase this, and it goes well in her system then it is a perfect win.

It took me years not to choke up and even feel anxious seeing couples out in public being affectionate or even just really comfortable together. Especially when I would see couples that are older. That feeling of ripped off would grab me. I didn't even realise that this truly rarely happens...

So glad you updated Sue - this side is anything but easy. To be honest, I have been totally shocked by the long running, deep repercussions of grief. But a day at a time and working on it, accepting help, and having things to look forward to all help and you will work through it all. Much...

You don't mention what your doctor has said about these vague symptoms? Have a really good read here - this is our official position and we don't argue outside of this so please sit down and read through twice as there is a lot to take in...

EMG are done for many reasons, it is not just an ALS test, but a tool neurologists often use. I hope all goes well, but twitching without weakness is not a scary ALS indicator. Let us know the results.

GOPHER Getting over petty heckling ensures restitution ENSURE

BUNS Broken underwear need stitches (one for Karen) STITCH

bestfriends we also often say here it isn't about the numbers so much about how you feel. So I would say, regardless of his numbers, if he seems to feel mucous on his chest and has a weak cough, a cough assist might be beneficial indeed. When my Chris was a PALS I couldn't get any health...

Sorry you have these issues, that is scary. I do feel you need to work with your doctor as they know your history and can examine you. ALS is a disease of the brain and neurons, so CSF problems are something quite different.

Really good idea to go back and ask your Neurologist so they can explain why they made their decisions as they are the qualified person. The short answer is no, if you had ALS they knew which muscles to test and would have found it with those. All the best.

Pretty sure that's all we can do for you. Read the post I already gave you the link for, but read it slowly, and read it twice as it has a lot of detail that skim reading will miss. All the best.

I'm so glad to tell you that this does not sound like bulbar onset, not even really early. My husband died of bulbar onset years ago and I know it really well. Doesn't sound like you have seen a doctor, this would be a great idea, but don't ask if you have ALS.

Truly this is incredibly important - twitching means nothing. Please read the 'read before posting' message.

What did your doctor say? I'm so very sorry about your mum. If she is the only person in your family, there is no reason to think it is genetic. If it is, you are not likely to develop symptoms until you are around the age she was, so you have many years to keep living yet. Please see a doctor...

We only deal with ALS here, that takes all our energy and beyond. Your doctor however can help you work on the twitching if it bothers you. Many people simply twitch so that is why working with a doctor that is examining you is the best way forwards. All the best.

If you can't control your fear and anxiety on this, return to your doctor or join a forum for anxiety as that is where it will be appropriate to receive help.

Please read the post you were linked to as it says you must read it before posting. It does answer you, but it seems your anxiety is so high that you can't sit still long enough to read something that would calm you, only things that will alarm you more. That is something that can be treated...

Please realise you are expecting the terminally ill, paralysed, and on breathing machines to answer you instead? Please, go make an appointment with your neuro and discuss your concerns there.

SWALLOW Seems we all love leaning out windows WINDOWS

Truly, 3 years of symptoms and you say that you know the EMG can be clean. Sorry mate, please we sympathise, really we do. But you must understand that you are asking the terminally ill, many breathing through a machine and paralysed to forget all we know and agree with you. Please, work with...

MACHINE Making a coffee has intrinsically nice effects COFFEE

I'm so sorry but I just don't know how we can do anything. Only your doctors examining you can answer. You just aren't meeting the criteria, not even a little bit, yet pushing for a terminal illness. We truly sympathise, but how can strangers on a text forum truly tell you different to your...

I think the mods could do you a true favour and close this thread. It is not appropriate to post this to the terminally ill. Twitching and pops mean NOTHING.

gosh doesn't sound anything like ALS try reading carefully here https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/ Please update us once you have seen a neurologist as that will inform you more thoroughly. In the meantime...

yes, please let it go and live your life. this is a great result and we are thrilled you can move on. go back to your doctor for help it you can't move on, but we have done all we can. celebrate!

gosh, nothing to do with ALS please read here and come back after you have a diagnosis https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/

twitching and feeling week mean nothing please go ask your doctor to examine you again

gosh, nothing like ALS read this very carefully, we won't argue against anything in there https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/ You have been cleared of ALS and diagnosed with something you want far more

oh V, what a weekend. If you can find a way to afford some help you really need to do that. Sustainable is more than important. rmt that is just so great. I agree, if he is putting on weight and tolerating the formula well now, don't rush, give yourselves a break and change him over to...

Lenore, wish I could send that hug too. What I feel a big need to say is that your feelings are totally valid. Every single one. Screamingly valid! Now, step back and try to look at your valid meltdown this way - you released another lot of grief, that's good. The waves, at this level, are...

Try reading here really carefully, it works best to read it twice as there is a lot in this post and it really deals with your concerns. https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/ Let us know what the 2nd opinion...

You already had your thread closed last week by Laurie, please don't post again until you have a diagnosis to report.

QUICKLY Questions usually instigate candid kinetically lithe yawing YAW

definitely - think about how to put it across as a way of making wins for himself, not as a loss. If you decided to add recipes that you blend yourself you can use high calorie ingredients like coconut oil and creams to boost up the calorie amount of a good nutritional meal.

Laurie sorry I thought jevity was 237 ml per can. If not you still need to double your amount of fluid as she also gives 180 ml fluids with each can.