Recent content by affected

Jrzygrl so sorry for the loss of your mum. I hope that sorting all the financials and house affairs out goes as smoothly as it can and you find yourself in a place of peace. We can never describe this 'side' of things, but it's nothing like I ever imagined! Sue, I'm so glad to know a little...

So sorry you fell, this is the sign you needed to tell you that walking is not safe anymore, and the days you knew you were not steady were signs that things are progressing. What you describe is typical. Muscles are losing function and others are compensating, then a tipping point is reached...

The lead up to these anniversaries and occasions is always really hard. I'm glad you getting help to work through it. 2 years - hard to believe it's been that long already, and yet that is not very long at all, still so very raw and fresh. Take much care Sue, you don't have to rush sorting out...

I'm 5' and operated hoist and did all care alone no problem 😊

we don't get fall here the way you do - even in autumn as we don't have deciduous trees in general. they are so beautiful to see! here where I live things flower all year round, just a bit less, and winter is just cold, but not enough to even frost. we have bees and butterflies all year round...

Very sorry Krys - so much the same for us, such torment during, but the last 3 - 4 days were peaceful and my Chris had a gentle passing that was a true blessing 💜 I hope this for you both.

TOLERATE Thank our ladies everyone really appreciated that event APPRECIATE I did that one by using the autofill options on my mac 🤣🤣

Wow Nikki I never said anything would stop ALS, not even close! Things that you mentioned are what I meant, as well as high calorie diet, lots of PALS believe supplements they take help them. I said nothing about stopping ALS. Obviously I was clear as mud. Sorry I upset you so much, I was only...

Really sorry to welcome you here. There are lots of oral therapies that can help maintain health, but there are no cures yet. We would be shouting them from the rooftops if so, truly. But for now you are in some shock and need to allow the reality of the diagnosis to sink in so you can start...

huge congratulations to you! Please do take this and stay away from here. If you have more symptoms stick with your doctors, but we are very happy to say goodbye and all the best recovering and moving into a life of health. Recovery can take some time, I've had some post viral issues when I was...

Still nothing like ALS which is great news. Remember that EMG is a tool that is used to diagnose a huge range of diseases and injuries along with the clinical exam. Good luck, but the kind of pains and aches you describe just don't line up with ALS.

PASTRIES Perhaps a strudel tastes really interesting enclosing strawberries? TASTE

I'm also sorry to welcome you here Powertools, but wow as a CALS widow all that god stuff is terribly offensive. Hopefully not to the person you are responding to, but really you are best talking up in the PALS section about your own stuff. I say that most respectfully. If you want to talk...

3 weeks isn't long mate - stop googling. Since you are not a doctor, you can find all kinds of results online to google searches, but you have no way to validate what you are finding. Cherry picking those results to make your experience fit is like being on a brain tumour site and arguing with...

I'm so sorry you are in such deep distress. It just isn't anything like ALS, not even a tiny bit. You can only work with your doctors, or join a general health forum. We only do ALS here and no matter how many times you try to make your symptoms fit, they simply don't. I am not saying nothing...

I truly feel for you but twitching means nothing, really it means NOTHING. I'm starting to feel very concerned for your anxiety that is shifting into panic. Please call your doctor and get an urgent appointment and discuss this so you can get help. We really can't do anything, but your doctor...

probably fungal, many PALS have skin problems and most often fungal cause - have it checked as you may be able to treat this fairly simply

Thanks for letting us know which doctor you are seeing. You are definitely jumping a long distance to go from a dent in the elbow to a terminal disease. Hopefully this general neurologist will help you find the cause. Honestly it is like someone being convinced they have a brain tumour...

and Bullet was in Angiegal's tree 😊

Then the next day he was in KimT's tree 😊

Hugo has been moving around this weekend. First he was in JuJu's tree 😊

Really don't see ALS even a tiny bit! Who are you seeing next week?

So sorry to welcome you here. You do need to plan ahead, but I agree that you don't have to do it all this week. Maybe read through our stickies on doing that planning, think about where in your body it is affecting first, and be ready with questions for your doctor next month on how to...

Alice you should always go to a doctor BEFORE asking terminally ill people to assure you about your fears. Please do so.

yeah, bouncing back means we go up and down and we hit the wall, sometimes the floor! I have always found the lead up to any big dates harder than the actual date. Glad you made it through another 💜

That whole week lead up can be brutal. It's an important part of grieving however and you have made it through all the 'firsts' now. That doesn't mean it's easy from here on, but please do be kind to yourself. You will be ok, but one year, such a big raw open wound still. It still hurts like...

JLynn it is incredible how far into our soul the effects of this disease sinks isn't it? 3 years is such early days, it is still a raw wound. I really hear what you are saying. I can talk about Chris quite freely now, but it has only been the past couple of years, and still occasionally a...

GRASSHOPPER Gratifyingly reassuring as slippery Sally hovers over Peter Pan’s exceptional rose SLIPPERY

How awful that you couldn't be here with your husband. Please do post the EMG results, as they can be given to you electronically there is no reason you shouldn't have access to them. They will really put so much into perspective.

Just doesn't sound anything even remotely like ALS - sorry it's taking so long to sort out. Please do work with your doctors and believe whatever directions they want to take with testing.

ICICLE Incessantly callous imps cancel lollipop events LOLLIPOP

CRACKER Consistently record all considered, kindhearted, eccentric responses RESPOND

You wrote: "I went to university of Maryland in Baltimore in March and saw a neuromuscular specialist who did strength tests and said I was fine." What you describe is feelings, not clinical weakness. I hope you believe this specialist this time.

Thread deleted for an obvious reason so you come back and try again when you will have been told - twitching means NOTHING and you do not have ALS. Please stop, only doctors can help you. Asking terminally ill to go through this is totally not appropriate in any way.

Bullet is having a visit in Angiegal's tree hooray!

twitching means nothing and truly that post I gave you should have reassured you that you are not describing ALS at all. Maybe you can get a video conference so you can get some help with the anxiety you are suffering over your fears. Regardless of what is going on, you do need help dealing...

and twitching means nothing - please see your doctor for practical help in dealing with the couple of weeks you have to wait

This answers all your concerns. Please see your doctor https://www.alsforums.com/community/threads/read-before-posting-answers-to-common-concerns-about-possible-symptoms.26591/

Listen - you obviously did not read this before posting. please do and see your doctor. Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

NURSERY Naughty underwear really sends everyone raucously yammering Karen would love that one 😊 RAUCOUS

really sorry Eric - you are so generous to have gone to such lengths to try - thank you 💜

Shaking is definitely not a symptom of ALS in any way - I would suggest you let your doctor sort this out rather than looking for something you are truly not displaying. All the best.

Welcome Dunric! We have a member here who was diagnosed in 1985 and was a neurology nurse before that. She doesn't come here daily but hopefully she will find your thread. It could help also if you start a thread up in the top area of the forum which will give you more posting rights over time...

Bullet spent a lovely day snoozing away in Beauty4Everyone's tree 😊

You wrote: "I had a clinical exam and normal EMG but the muscle biopsy did show chronic and mild neurogenic changes that listed a slew of things it could be attributed to one of which is MND. Based on the normal clinical exam and EMG they did not seem all that concerned" notice it could be...

Well it wouldn't be a full adventure if you didn't have some twists and turns to give us ... 🤭

You see the neurologist is trying to tell you that you do not have ALS. You don't need to pursue this as you have no ALS symptoms at all. Why don't you let your doctors decide what you have and what you need to do instead of trying to steer them to what you have decided is going on? Please...

Your stories are always such a journey - what a fleet. Enjoy this new chair, I love how you overcome such obstacles in life!