Any knowledge of burning sensation at back of head followed by dramatic overnight muscle wasting throughout body weeks later then ALS symptoms.

[Jez]

see above

 

[Nikki J]

No. I do not believe muscles can waste overnight from anything but certainly not remotely ALS. See a doctor

 

[Jez]

No. I do not believe muscles can waste overnight from anything but certainly not remotely ALS. See a doctor

I do know how bizarre and unusual it sounds which is why I’m asking the question. It was literally like something shutting down. Do you have any knowledge of people experiencing a burning sensation at the back of the head at initial onset of symptoms?

 

[Nikki J]

Again no. See a doctor

 

[Jez]

Again no. See a doctor

Are others seeing my questions or just you? Obviously you won’t have heard of everything that can happen with this mysterious illness. I’m hoping someone can help me find a glimmer of hope. Perhaps I was so highly stressed that I had these extreme symptoms but I can assure that they both happened. I wish they hadn’t.

 

[Nikki J]

Everyone sees it. You have had 14 views. I don’t know everything but I have been a member here for 7.5 years, I have lost 5 family members to this in my life time ,have had both friends and professional contacts with ALS and have attended professional ALS conferences. You have said nothing consistent with ALS. If anyone disagrees with me they will say so

 

[Clearwater AL]

To be be blunt... I seldom post on this forum anymore. But... your post above is
over the top. First, I have never heard of over night muscle wasting in the 100s
of Threads I have read. Second, burning sensation on the back of the neck isn't
even remotely related to ALS or have I ever read of that.

See a doctor... there is nothing this forum can help you with until you do.

Finally, plain and simple... NO.

 

[KarenNWendyn]

I see your questions. Whatever it is, it’s not ALS. ALS tends to start insidiously, typically with failure in one small area such as in a finger or ankle, and then spreads from there.

Nikki is one of the most knowledgeable people on this forum. She has seen most everything ALS-related. I also have ALS and am also an MD with 30 years of practice experience. I haven’t seen overnight muscle wasting. But if someone has a severe infection or widespread malignancy, or even severe dehydration, they can become weak very rapidly.

You need to see your doctor if you have concerns. But what you have is not our experience with ALS and we really can’t help you with it. Sorry.

 

[Jez]

Everyone sees it. You have had 14 views. I don’t know everything but I have been a member here for 7.5 years, I have lost 5 family members to this in my life time ,have had both friends and professional contacts with ALS and have attended professional ALS conferences. You have said nothing consistent with ALS. If anyone disagrees with me they will say so

All of your experience and knowledge is the reason I am here. I want to speak to people like you because you will have so much you can give to this conversation. All I can say is that I have Als symptoms throughout and this is how it started. I know that, you don’t but it won’t matter to me if I find a thousand people that say they never heard of it, I am reaching out for someone that may have done in the hope that it can help me. The truth is the truth no matter how bizarre, unreal or seemingly impossible it may appear to some. Thank you. I will hold out for more people to see this even if it will mean that I get painted as someone that is saying something that no one can possibly imagine is true. I know it’s true. It happened to me.

I see your questions. Whatever it is, it’s not ALS. ALS tends to start insidiously, typically with failure in one small area such as in a finger or ankle, and then spreads from there.

Nikki is one of the most knowledgeable people on this forum. She has seen most everything ALS-related. I also have ALS and am also an MD with 30 years of practice experience. I haven’t seen overnight muscle wasting. But if someone has a severe infection or widespread malignancy, or even severe dehydration, they can become weak very rapidly.

You need to see your doctor if you have concerns. But what you have is not our experience with ALS and we really can’t help you with it. Sorry.

I am so hoping that you could be right and that I don’t have it. It is the reason to post this. The burning at the back of the head was on 1.12.18 and I understand it could have been an early indication of damage to the CNS. Then the night of the strange symptoms was mid January. I am not saying that my muscles may have been deteriorating during that time period as I could literally feel things happening to my body. All I know is that on that night my muscles somehow changed which was a feeling and visible to me. The next day I had jelly feeling legs, buttocks etc. even some indication that the muscles in my bladder had been damaged. When I showed what had happened to someone that I hadn’t seen for a while they even joked about how my buttocks had gone. Believe me I know this sounds odd but it’s true and I’m looking and desperately hoping for something that could match it to something other than als. Since that night I have progressed with every other ALS symptom.

To be be blunt... I seldom post on this forum anymore. But... your post above is
over the top. First, I have never heard of over night muscle wasting in the 100s
of Threads I have read. Second, burning sensation on the back of the neck isn't
even remotely related to ALS or have I ever read of that.

See a doctor... there is nothing this forum can help you with until you do.

Finally, plain and simple... NO.

Thanks for your response. I’m hoping to reach out to someone that has heard something similar no matter how bizarre it may sound to those that haven’t heard of anything like it. Please see the attached file. I’m grateful to any input. Thanks again.

I am so hoping that you could be right and that I don’t have it. It is the reason to post this. The burning at the back of the head was on 1.12.18 and I understand it could have been an early indication of damage to the CNS. Then the night of the strange symptoms was mid January. I am not saying that my muscles may have been deteriorating during that time period as I could literally feel things happening to my body. All I know is that on that night my muscles somehow changed which was a feeling and visible to me. The next day I had jelly feeling legs, buttocks etc. even some indication that the muscles in my bladder had been damaged. When I showed what had happened to someone that I hadn’t seen for a while they even joked about how my buttocks had gone. Believe me I know this sounds odd but it’s true and I’m looking and desperately hoping for something that could match it to something other than als. Since that night I have progressed with every other ALS symptom.

Nikki or Karen - is it possible to private message with either of you. I am new. I am not sure what is possible. Desperately needing to speak to people like you. Thanks

The previous answers are spot on. Also, I've never had a burning sensation anywhere. My first symptom was left side foot drop, and I felt just fine.

If you can see atrophy/muscle loss, you should also have clinical weakness - something a doctor should easily see. If you had noticeable atrophy overnight, it isn't ALS. But I'd be seeing a doctor ASAP.

Hi. Not sure if you can see the attached file. I am new. I so wish I didn’t have these symptoms. I am looking for reasons why it can’t be als as any sane person would. These bizarre things did happen to me. I seem to have felt every little change throughout this rather than not notice anything until there is a dramatic symptom as in most cases such as slurred speech or a dropped foot.

 

[grounded]

The previous answers are spot on. Also, I've never had a burning sensation anywhere. My first symptom was left side foot drop, and I felt just fine.

If you can see atrophy/muscle loss, you should also have clinical weakness - something a doctor should easily see. If you had noticeable atrophy overnight, it isn't ALS. But I'd be seeing a doctor ASAP.

 

[lgelb]

Why spend time here, on line, "looking for reasons why it can't be ALS" when you can see a doc who can tell you for sure (while actually examining you) that it's not, and who can suggest further diagnostic processes or treatment if/as applicable?

We cannot support circular speculation in the absence of willingness to seek medical help, so I'm closing this thread. All the best.