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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Hello. I am 25 year old female. Paternal grandfather dx ALS at age 74. Died two years later. No other family members with ALS

Several months ago, I thought I was having a bit of difficulty speaking, but on refelxtion, I think it may be that the my TMJ has worsened and makes it difficult to move my left jaw.

I think I may have had the occasional muscle twitch from time to time, but never noticed en masse until recently (more to come on that matter).

Let me start by saying how guilty I feel posting on this thread. I know first hand what a serious, devestating illness ALS is, and I feel terrible taking time away from people who have been dx and need help. It seems shallow somehow, like I am taking away attention from those who are truly ill. I hope someone will reply though, as I feel so alone and frightened.

Now, what brings me to why I write: two weeks ago, I spent 17.5 hours at my computer typing a paper that was due the next day. After I finally got up from the computer, I experienced numbness and tingling so serious in my legs, arms, feet, and hands that I thought I might be having a stroke. Several days before that, also while working at the computer, I experienced serious back pain.

Not long after fininshing that paper, I began my second one. I noticed that the migrating tingling and numbness continued, sometimes accompinied by a sensation I can only descibe as someone putting a tournetquet around my elbow or calf, like I am not getting enough blood to my extremities. and my anxiety grew. Finally, last Friday, I went to see a GP about it. She said keep a diary and maybe go see e neuro later.

Well, that very night as I was researching ALS symptoms, I had a twitch of knee cap. I also remembered that I had right eye-lid twitches for several months before the computer typing marathon. Then, for two days staight, I had nearly constant twitches in my calves and then a few elsewhere on my body.

Later, when I read thay drop-foot could indicate ALS, I suddenly felt like my left had dropped. But, I can move it just a I ever have before.

Though I feel weak and tired, I do not appear to have any actual loss of muscle strength. After having a near panic attack the other night, I went back to my GP. She said based on the sudden and non-patterend nature of my symptoms, she doubted an early onset of ALS. She encouraged me to keep a dairy of symptoms and to reevaulate before I go to a neuro.

The GP prescribed Klonopin for anxiety and that has stopped the twitches completely. I must admit that I have not gotten ANY exercise for a long time (PhD candidate holed up writing papers), nor I have eaten more than 500-1000 calories per day for over a month. However, I have had a complete metabolic profile, including for b12, and all was ok.

I also have a history of depression, anorexia, OCD, hypochondria, and obviously, anxiety. Right in the middle of the stress of writing my papers, I found out my little sister (20 yrs old) who has a serious auto-immune disorder has to have serious, life-threatening surgery. I am her only support (our parents live 7000 miles away) ans this has been very hard for me.

I am the first to admit that this may all be psychosomatic. I am just reaching out, looking for some reaasurance since my GP said at this point I do not even need to see a neuro. I guess it is hard for some reason to imagine any other dx than ALS.

Again, THANK YOU THANK YOU THANK YOU for your time and I am very sorry to take up space needed by people who are actually fightint this cruel disease as my grandpa so bravely did. Not people with computer chair injuries and anxiety like me!





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