Fear of ALS: New here

Highlights Only
F

fenix1

Member
Hey, my name is Andy and I am new to this forum. Im a 24 year old male and I am terrified of ALS. My symptoms started months ago with off and on stiff legs. My legs would seem to be stiff and tired for a month and then go away. Me and my doc always assumed that it was just my anxiety since i was diagnosed with anxiety disorder. Well about 2 and a half months ago all this wierd stuff started to happen. My legs went stiff again but this time it seemed like my right one more than my left, i could feel the stiffness all the way down to my toes and i started to worry. Got on the internet and sure enough self diagnosed myself with als. That is when the twitching started most notably in my feet and my left calf. I would get these wierd restless feelings in that calf and i could look at it when it was at rest and it would look like ripples in my skin but i couldnt always feel the twitches (thats what worried me). My doc sent me to get an mri of my spine and it turned out that i had a herniated disc and stenosis in my lumbar region, that made me calm down a little bit, but when the symptoms seemed to get worse i started thinking als again. The twitches started to pop up everywhere (calves, thighs, knee, arms, hands, face) then i started getting other symptoms where it would feel like my fingers would curl, twitch, and hands would hurt, my face would feel numb, i felt like my jaw was tired, felt like i couldnt swallow or talk properly, and now i get these spasms/pains in my legs where most of the twitching occurs. I have been to 6 doctors including the best nuero in town and all checked my strength and reflexes and said everything looked normal and the nuero said there wasnt even a need for a emg but i made him schedule me one for this week. What worries me the most is the wierd rippling twitches in my calf, they seem constant and i cant even feel most of them but if i move my calf and then relax it i can see them popping up all over the back of my calf. Does anyone else have this? What about the leg stiffness, could that be from my back problem? and the spasms and pains in my legs? It almost hurts to walk sometimes, but i notice that i can still walk fast on the treadmill and actually my legs loosen up (but ache more) after exercising. I am just terrified of having ALS, i check my body everyday for atrophy or some sort of weakness, im just worried that im one of the few that gets the weakness later or has it already and just doesnt know where it is. Can someone shed some light on my situation? I would appreciate it greatly thanks!Andy
 
This cetrtainly sounds like BFS. I can tell by your post that you are struggling with aneiety issues. This seems to be a common thread among us. First see a Neuro get an EMG. if everything is O.K. You need to find some one to help with your anxiety issues. Trust me, I am very familiar with your problems.
 
Thanks for the reply roger, i hope your right. THERE HAS TO BE SOMEONE ELSE OUT THERE THAT CAN RELATE TO ME!!! PLEASE SHARE YOUR THOUGHTS IM GOING INSANE WITH THE CALF TWITCHES AND PAINS AND THINKING I HAVE ALS!!!!!
 
Hey Andy Welcome to the site, from reading what you are saying you definitly have bfs and since you have been seen by the doctors and a good nuerologist I would bet big money on it. It sounds like the route cause of your problems is the anxiety disorder you have been diagnosed with, all these symptoms, twitching, muscle stiffness, you would not believe how many symptoms that anxiety can cause. So step one, BELIEVE YOUR DOCTORS, step two read "BFS in a nutshell"that is available on this site.Step three, Don't google any other sites for symptoms. Step four,Get some anxiety help stat, I take Ativan 1mg on bad days and it helps me. Step Five (Optional) Don't listen to Country music! Well a little Shania, but that it! You'll be ok Andy, just use this site to get a grip and you'll do fine. I'll take a while but your in the right place.Remeber if you have seen a Neurologist and he cleared you than you are all set man, thats a big thumbs up.Best of luck,Lefty C
 
Hey fellow: I think everyone of us who have posted here are familiar with what you are experiencing. You may not believe this right now, but you're not dealing with twitching and pain, you're dealing with flat out fear!!! and it is horrible. But, you can get through it. I feel very confident that you are not dealing with ALS, but are experiencing benign twitches and other weird sensory issues. They are real, they hurt, they scare the heck out of us, but they are not fatal. I don't know where you are or how you feel about psychological counseling, but try to find some one to help walk you through this. There is hope! Find a friend, doctor, minister, whoever. From someone who was at the breaking point January 1 2008 and am now back having a life again - you can get through this and it doesn't have to control you. I wish you all the best - just hang in there and don't give up.BlessingsCindy
 
Anything that makes you terrified of ALS sounds like BFS. The reason for the horror that we experience when this illness pops up is it's ASTOUNDING overlapping similarities with ALS. What you need to ask yourself is this: Do I know more than the neurologist that just tested me? Doubtful. We NEVER believe them. NEVER. I have seen MANY instances where we come on this board after self diagnosing ourselves with ALS, spout panic and fear, then come the doctors visits. We are told something like this from our GP....."Probably nothing.....I will refer to a neuro for your peace of mind" Sounding familiar? Then, we go to the neuro, (still convinced we have ALS), they do the tests.....exam is normal, but they schedule the EMG for our peace of mind. Voila, it is clean as well. We feel MUCH better for about a week. Then the doubting begins. Well, I read a case study......or, I heard about some lady on the OTHER forum......etc. etc. It boils down to this. My neuro told me in his office....."I have NEVER seen an ALS case present with twitching, the patient rarely knows there is twitching, I have to tell them." They come in with WEAKNESS.....WEAKNESS is the key. Not feeling wierd, or crampy, or vibrating, or buzzing, or itching, or achy, or twitchy, but actually having weakness. So, if you've been to doctors and been cleared, BELIEVE them. If you have not been to a doctor, GO! And then believe them. Easier said than done, but once you get control of your mind, the body will follow. I promise. And yes, EVERY ONE of your symptoms are indicative of BFS. Good luck,Shauna
 
I just thought of something and it seems to be common here. How bad does this get when we get a diagnosis of a herniateddisc and spinal stenosis and we say WHOW! THATS GREAT! I have had two back surgerys and a steel plate put in my neckand beleive me its no picnic. (Buy the way nothing to do with BFS nor is it the cause).This disorder is brutal without a doubtbut the one thing I have found out over my 13 years of of this hell is that it is NOT ALS, nor will it turn into it. True some of us may develope it someday but it will be purely coincidence.
 
Andy, Yours case sounds like classic BFS. You are pretty early on in your symptoms, thats when they are hard to take, and alot of us have been in your shoes, it is easy to believe something bad is brewing. I am 18 months into my calf twitching, 24/7 in the right one, and alot of people here have this is well. I have watched the muscles in my calf do unreal things, including what you describe. As for the stiffness, it is a big problem for me, there are days where I stand from a chair and it takes me 30 seconds to staighten up and even begin to try and walk. I have no idea why it is happening. The Calf thing can drive you insane, I used ice packs every night for over a year to get to sleep , when I watched TV, or on long drives, it helps, give it a try. I still use them but I am also trying to build up a tollerance to the twitching as it looks like it is not going away anytime soon. Also rolling up your pant legs tight around your knee if you are wearing jeans seems to help some, just gives a different feeling or something. I also did not believe my early neurlogists who said there was no sign of ALS, that is also common, but they are right, you do not have it. I had one of the top neuromuscular specialists at the Mayo clinic tell me ALS is really an easy diagnosis, it is not that hard to spot. You are going to be ok, you just have to learn to cope with your symtoms, which is not easy. Good luck.
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top