Not open for further replies.


New member
Feb 13, 2019
Learn about ALS
Hello everyone , thank u for taking time to read my post , any and all feed back is greatly appreciated , and for all of u suffering with ALS I pray for u all and am starting a campaign to raise and donate money for ALS ! Ok so here is my story , for the past 2-3 years I have suffered with what ever dr has called panic disorder , I feel
Non stop panic attacks 24/7 have been to many ers / drs /specialists with no real diagnoses other then anxiety ... my ALS worries started about 3 weeks ago , first I noticed a very weird sensation feeling like it was coming from my scalp and face it was like pins and needles dripping down my face and it was burning in a weird way ! My nostrils felt burningly like as well ! Super weird .. I then noticed a weird metal taste in my mouth like iron it was just there and everything I ate tasted like metal ... I started to have weird head aches that would just stab me in the head for like 30 seconds at a time then go they hurt so bad it was like an anyersum feeling ! I couldn’t take these weird symptoms any more and went to the Er , the Er did a cat scan which showed nothing bad an blood work nothing bad ... they gave me a weird cocktail I Remeber it being benadryl and some medicine called REGLAN , at first I felt super drowsy thinking it was prob just the meds about an hour after it was pushed thru my iv I felt the most god awful symptoms I’ve ever felt it felt like I was being electrocuted over and over my hands felt like they weren’t there then all my limbs would get pins and needles all over !!! It was horrifying !! I went back to the Er and they brushed it off saying it was prob just the medicine .. this was January 21 ... that night I woke up with a racing heart rate and could not breath right ... the next day I noticed twitching through out my body stomach arms legs hands face in different places ... I didn’t think much of it until I started looking up signs of twitching and of course stumbled on als !! Since then now I am wondering if all the signs I’ve felt through out the month could be als building up ! I’ve had trouble with swallowing I haven’t chocked or anything but certain foods like chicken etc it just feels like it’s getting stuck going down a little , i also get a lot of stomach acid coming back up my esophagus an severe shortness of breath ! I’ve always thought this was due to GERD having stomach reflux but wondering if these are signs of Bulbar onset als :,( the shortness of breath and difficulty swallowing .. so anyways flash forward .. I went and saw a neurologist he was highly recommended in the area , he did a strength test which was great he said and he did and emg on both of my arms and one under my chin made me push down with my toungue to my teeth to check my toungue strength he said everything looked perfect and no need to worry ... said he was 100% sure no als or MND ... since then I’ve been back to him again to show him my toungue which I thought looked weird and wavy but he said it was just from
My teeth and did another strength test saying to stop worrying ... I called today to see if we could do another emg on my face neck and legs but he said he Reallt doesn’t think it’s necessary.... from ur guys opinion what do u think ?? Am I worrying for nothing ? Is this just all anxiety ?? Or would u just go to a diff nuro for more exams ?? Please let me know ur thoughts an thank u so much for reading this
Not open for further replies.