new here and very scared!

[Guest]

Dear Emma

ALS strikes in very different ways but there is one thing clear.
Athrophy starts after fasics. Tongue athrophy starts far after certain ALS sypmtoms which can not be ignored by a neuro or any doctor.

Best wishes

 

[Guest]

Emma--

Please keep in mind that health anxiety is often caused by health problems. The fact that you had to deal with swine flu, the pandemic that had much of the world freaking out, can certainly raise your awareness to your body and the things that can go wrong with it. Also, it is quite possible that the flu or something else is causing some type of complication in your body and/or immune system. But that does not mean it's ALS. Twitching can be caused by literally hundreds of things and sometimes the doctors simply don't know what's going on. But the inherent good news in that is that no one seems to think it's ALS. I'm not saying that anxiety is causing all of your problems, but it can certainly add to them and exacerbate the ones that are already there. Hopefully you can get these things figured out with doctors.

Best of luck,

Andy

 

[Guest]

I would google ALS clinics and see if any are near you. You may be able to get an appointment directly or refereed by your GP.

 

[Guest]

Emma ...

a) bulbar onset almost always starts with slurred speech and swallowing problems.

b) the skin does not thin out in bulbar ALS. Again ... you have lost almost 50 pounds in three months. That is a huge amount of weight to lose suddenly ... for a man or a woman, tall or short, thin or fat. Have none of your doctors commented on the weight loss? Is nobody concerned? Have you been dieting or have you been unable to eat following the flu? Are you still losing weight?

c) The face changes enormously when you gain or lose weight. Naturally your face will look different now than before you lost the weight.

d) You clearly have some serious health issues to deal with. I sincerely hope that you will run into someone who takes your symptoms seriously, and gets you the help you need.

 

[Guest]

Emma,

I don't think anyone is suggesting that anxiety is causing all of your symptoms. Glad to hear that your are taking something to help with that issue.

I simply think you've exhausted the neurological aspect of what may be going on and need to look elsewhere for an answer by consulting with a rheumatologist or gastroenterologist.

Also agree with Capt AL that if it would give you peace of mind, go to the experts at an ALS Clinic.