Hello

[Chrissyfwb]

Hi Everyone.. I am just going to tell you my whole story.. so here it goes:

I am a 25 year old female and about a month ago I got in a little fender bender (I rear ended someone) it was VERY minor I didnt even have my foot on the gas and we were going out from a red light. Well about two days later I started getting a twitch in my eye.. it lasted a couple of days I didnt think anything of it and then it went away. Well also about 4 days after my accident I got this thing called Costochondritis which is an inflammation in the cartilage in your sternum where the breastbone meets your ribs. Anyways around that time my right arm shoulder muscle started twitching.. and it wouldnt stop! it twitched almost non stop for about 2-3 weeks. I didnt really worry too much about it probably because I had no idea bout anything that it could be. well it stopped after about the 2 weeks. but THEN there is some muscle in my upper middle abdomen that started twitching.. and that kinda freaked me out. and then it wouldnt stop twitching and then when that started the SAME part in my right arm shoulder started twitching again.. and I notice little twitches all over my body now.

I have NO health insurance and I have called neurologists and all of the ones in this area do not take self pay.

I now think that my legs feel weak. I just dont know what to do. I know that my age is young for ALS but its not unheard of.

So what do you guys think? I am a stay at home mom to two little kids. a 4 year old and a 20 month old. and this is just breaking my heart. In my heart I know what I have is ALS..

My main question is and I have not been able to find the answer to: can you have ONE muscle that twitches in such an odd spot and it be normal. It seems like BFS is twitching all over. not one muscle twitching. so I dont think I have that.

What are your thoughts?
Thank you so much in advance for taking the time to read all this and comment..

Chrissy

 

[wright]

You have muscles that twitch . . . just like everyone else on the planet. You don't necessarily have BFS (and by the way, one muscle or 100 muscles can twitch and you can get a diagnosis of BFS). You are anxious and it's causing you to twitch more . . . or you're simply noticing it more. You were twitching before any of this started, I can assure you. Twitching occurs for a gazillion different reasons, nearly every one of them, completely benign and harmless.

My advice: Get off of the internet, because you are now going to a very dark place where rational thought will soon be gone (it is already beginning to leave you). How do I know this? You've diagnosed yourself with ALS, just because a few of your muscles are twitching. If that is how ALS is diagnosed, then everyone on this planet would be diagnosed with ALS. You are clearly not qualified to interpret what you are reading on the internet, so please . . . for your sake and the sake of your children . . . stop these ALS thoughts, because nothing that you have shared would lead anyone that knows anything about ALS, to think you have it.

Now go enjoy your life and your children. I'm sure they need you. I wish you peace

 

[Twinsmom]

So what do you guys think? I am a stay at home mom to two little kids. a 4 year old and a 20 month old. and this is just breaking my heart. In my heart I know what I have is ALS..

My main question is and I have not been able to find the answer to: can you have ONE muscle that twitches in such an odd spot and it be normal. It seems like BFS is twitching all over. not one muscle twitching. so I dont think I have that.

What are your thoughts?
Thank you so much in advance for taking the time to read all this and comment..

Chrissy

Chrissy,
You do not have enough information to know in your heart that you have ALS. You are letting your anxiety and fear of not understanding what is happening to your body and misinformation lead you to a place that is not reasonable.

PLEASE, for your sake and the sake of your children, let the worries go.

Self diagnosing yourself based on other people's interpretation of other people's interpretations will only stress you out more and paralyze you with fear and worry. Twitching does NOT meet diagnostic criteria for ALS.

Peace,
Melody

 

[Chrissyfwb]

Thank you so much for your response... I am just so confused now. You said "because nothing that you have shared would lead anyone that knows anything about ALS, to think you have it." Are you saying that it is not an initial symptom of ALS that you have one muscle twitching NON stop and then another muscle starts twitching non stop?

It is interesting to know that BFS can affect only one muscle?! I didnt realize that at all. That is the main reason why I am scared. I see all the people come on here saying "oh my calf started twitching and then it moved to the rest of my body" and obviously the calf started twitching and then they started paying attention to it and noticed the other twitches. and its not a problem. but in my case that shoulder hasnt stopped twitching for a month now! with a week break for a little while. and then now an incredibly strange muscle wont stop twitching. something in my upper abdomen?! thats just a very odd place. I do understand the other twitches are just probably from my awareness of everything now.. I am not really worried about them. they never happen in the same place over and over like my arm and my belly..

Also I was reading the stickies and I was reading over and over that you just need to go to dr. and dr. and dr. but I cant. I have no one except the emergency room and you guys... thats why I am turning to you.

And please dont just discount me for my age. It says that 5% of ALS cases are under the age of 30..

 

[joelc]

Twitching is not used to diagnose ALS. Please remember that the posts you have been reading that talk about twitching are in the "Is this ALS?" section. Twitching is not an initial symptom of ALS. It is highly unlikely that ALS could strick you at such a young age and what you have decribed is not ALS.

 

[wright]

ALS is a denervating disease that causes weakness and muscle atrophy . . . and the weakness and muscle atrophy occur in such an insidious manner . . . that by the time you realize you have it, it will be quite apparent that you do. Twitching means nothing in the absence of weakness and atrophy and still wouldn't mean you had ALS, even if you had all three.

It doesn't matter if twitching is a first sign of ALS or not. A bleeding nose can be a sign that someone has Ebolavirus . . . so if you get a bloody nose, would you think you have Ebola? My guess is, no. If that's the case, then why is it that just because you have a few twitching muscles, that you all of a sudden (by the way, there is nothing "all of a sudden about ALS) have a disease such as ALS . . . when there are so, so, so, so, so many other things it almost assuredly is?

You had a car accident . . . it caused you to have a few twitching muscles . . . you then "research" it on the internet . . . you start to panic because of that misinformation on the internet . . . and low-and-behold . . . you have diagnosed yourself with ALS. If someone told you that story, what would you think to yourself?

My advice to you was for you to get off of the internet but obviously you haven't taken my advice. You apparently are going to continue your quest and cause yourself more needless worry and ruin your life in the short run and maybe even in the long run. Believe me, we've seen it over and over and over and over and over and over again . . . and in the end . . . you will look back and wonder what on earth you were thinking. As I said, we've seen this scenario more times than you can imagine.

You can choose to listen to reason or you can choose to become so irrational that no one and nothing will be able to convince you that you don't have ALS. The choice is your's. Good luck with your decision.

 

[seanoc1]

I thought I would expound but others have said it better than I can.

I would implore you to do two things.

1. Get to a Doctor. Get a referral from a free clinic. You need the information.

2. Do not assume it is ALS. You REALLY do not want this disease.

 

[sadiemae]

Go to the emergency room, but be prepared to pay for it when you are not DX with ALS. We had no insurance, went to ER, and got the DX after a 7 day stay. My husband had difficulty walking, talking, eating ,breathing, and a few twitches. Until you have more issues, save your money, enjoy your life, and stay off the internet. HUGS Lori

 

[Twinsmom]

It is interesting to know that BFS can affect only one muscle?! I didnt realize that at all. That is the main reason why I am scared.

That's actually NOT what Wright said-please go back and read through his post carefully. He said BFS could be one muscle twitching OR 100 muscles twitching.

Just twitching DOES NOT meet the criteria for consideration of an ALS diagnosis. If you want to understand more thoroughly, there are "sticky" posts in this "Do I Have ALS?" grouping that will go over the diagnostic criteria.

BUT, to answer your question and give the feedback you are asking for, you don't sound like ALS-honest. I completely understand how the twitches can be scary, but they are more often associated with other health issues, or BFS. If you have no insurance, there are lots of resources out there. If you end up going to the ER-you can ask for a social worker to help get you some help.

Best of luck
Peace,

 

[Chrissyfwb]

Thank you guys again. I totally understand that MOST likely I don't have ALS.. And I will try and get off that kick. But do you guys think though that it sounds like there is SOMETHING wrong with me? I mean last night I went out with some of the moms from the playgroup I am in and I had a couple of drinks but through the whole night my shoulder never stopped twitching... And it's still twitching like crazy this morning. That can't be normal, can it?! And that doesn't sound like BFS does it? I just don't know if I should wait it out or what in the world I should do.. This is something I have not been able to really find anything on the Internet about.. (one muscle that just won't stop twitching) except for ALS.. So I guess I just don't know what to do or think. The muscle in my belly that twitches still twitches on and off throughout the day but not nearly as constant as my shoulder. This has been going on for over a month now!

 

[ktmj]

I have had BFS for 21 years. YES, a single muscle can twitch for months. At one point I had both lids of both eyes twitching for almost a year. I promise that will make you forget about your shoulder.

 

[lydia]

Chrissy,

I know the twitching seems so bizarre that it is hard to believe they don't mean something significant and scary. But without any other physical problems, they really don't indicate anything. Really. You will get used to it, since they will probably stick around for a while.

Lydia

 

[Chrissyfwb]

Ok... I had such a great day today.. I felt completely happy from your responses and also found the BFS support fourm that even more so encouraged me..

but then tonight I was just sitting on the ground playing UNO with my daughter and the arch of my foot started cramping so much. and it hasnt stopped. I NEVER get cramps in my legs, feet.

And please, before you say again that I dont have ALS can you just explain to me one thing?

If the first very early symptoms of ALS is cramping, and twitches... than why can you be so sure that its not ALS?

I mean that IS what the starting symptoms for people are right? well for those who have those symptoms before they are able to feel or notice the weakness.

This is just making me so angry! I was finally feeling so great. and I was SOO thankful for you guys that basicly gave me the slap in the face that I needed, saying hey! your fine! and THEN my foot starts cramping!

Do you still feel that this is not ALS?

 

[lydia]

Chrissy,

BFS is frequently referred to as benign cramp-fasciculation syndrome, so yes, cramps can be a part of it as well.

 

[Chrissyfwb]

ahh yes I saw that as well.. but its just a little confusing to me I guess. I am so very new to all of these weird strange feelings and you guys HAVE to understand from reading such conflicting info from so many different sources saying: cramping/twitching= signs of ALS.. and then you guys saying "anyone who knows anything about ALS would know that you dont show anything pointing in the direction of ALS."

I was actually going to come on here later tonight (before the cramping started) and say you know its just so sad and I can also see how frustrated you guys become from people that are healthy coming on here making themselves completely miserable and depressed with worry when they could/should go on living the life that people diagnosed with ALS probably wishes they could go on living. like I am sure you guys look at people without ALS that lock themselves up in their own prison when they should be living the healthy lives that they were blessed with. I cant even begin to imagine how that makes some of you feel. And I am truly sorry about that. I am not trying to be one of those people I promise. I am just trying to make sense in my head as to how you guys say that a person with twitching/cramping (oh and if it makes any difference I have had NO twitching in the place that is cramping) leads you to believe that I am not showing symptoms of ALS. thats all.. just that one simple question.

Thanks again..