Need help, reassurance, anything

[Al]

Hi there Megan. Sometimes what we think is thorough is not the same as what a doctor thinks is thorough. As I said before the chances of you having ALS are pretty remote. It can happen but it is rare for a person as young as you to get it. Comprehension and memory problems are not usual symptoms of ALS in a younger person. Frontal temporal dementia is usually found in quite older people. For you to have this would be like the odds of winning the Super Ball Lottery. I still think there is something else going on that you may not even be aware of. I'd wait another few weeks and see if anything gets worse and if it does go to your family doctor and ask to see a Neurologist experienced in Motor Neuron Diseases. Try to relax and don't think bad things every time you notice the slightest difference in the way you feel. Don't forget you are still young and some hormones might be just trying to catch up. Take care. Al.

 

[stu]

I had a scare myself, with some similarities. Mainly total body twitching and "perceived weakness". I got an MRI (brain & spinal) and some bloodwork done - all negative. From time to time I thought I was slurring words and it was hard to speak. Of course like a moran I typed in these symptoms and ALS popped up everywhere. I was freaked.

Then I ran into a site that helped me. It was a site for people with what's called BFS - Benign Fasicualtion Syndrome. It's benign (not terminal, and generally harmless). The people in the forum there are remarkable insighful, helpful and knowledgable of their condition. If you are still intent on finding out more, it sounds like you may want to research this site and see if this is what you have. It won't cure you, but can lead to some answers.

http://nextination.com/aboutbfs/forums/viewforum.php?f=5 (see the BFS in a Nutshell).

The bad news is that because it's benign, not much interest is placed in this area, and neuros don't know much about it. Only a few.

But a few of the main symptoms are total body spasms or twitching (fasciculations), perceived weakness (not clinical weakness), some body pains, lump in your throat - really, there are a ton of symptoms, and most of them are caused by stress/anxiety. BFS seems to have no age limit. There are a number of people your age who visit complaining of ALS like symptoms, and like you, go to a neuro and are told they have nothing to worry about. I think this is more the case with you - ALS is someone so young is extremely rare.

Also, with ALS, you don't get better the next day. There are no good days and bad days. Just a progression of loss of strength. Twitching is a secondary symptom, and caused only after the muscle has been affected. The twitching does not travel from arm to arm, from leg to leg, to back, to neck etc...It's localized.

So if you still want to seek out, take a looksee...

 

[hinomiko16]

Thanks for that, I will definitely check it out