Painful cramping & twiching!

[mhswarriors]

I copied this post here but it was supposed to be #14 not 1. It has an good explaination of twitching. Joel

I think you will get good news. Twitching and cramps are not an initial sign of ALS as far as I understand. Nor would it hit that rapidly (twtiching body wide suddenly). That is what happened to me and I still don't have weakness (3 months in). The big thing to remember is ALs is a disease of WEAKNESS not anything else. It's the weakness/atrophy that is the problem.

here is a good article to read if you get a benign diagnosis like I did:

AboutBFS.com • View topic - als twitching vs bfs twitching

 

[cajebe]

Well, I am again looking to all of you for advice. I have been feeling worse lately...my arms and hands hurt so much, more when in use. Just driving or blow drying hair hurts hand. The lower arm cramping is really bad. Twitching continues and it is all worse on the right side. Also, tired and ache in arms and tingly feeling comes and goes. I noticed large indention near elbows and smaller ones on upper knee area. I have been doing stretching for my right foot which is smaller than the left 'atrophied'. I can feel and see my tongue twitch even while in my mouth. Lyme neg, thyroid norm, all general blood work came back fine. Emg was done on right foot, calve was normal. That was done earlier this month and neuro want me to come back the end of next month. Any suggestions on what more I should suspect or test further. :!::x thnx

 

[cajebe]

re: Painful cramping & twiching!

Sorry... I forgot to add...cmt a possibility? Neuro did not suggest a thing. I just researched this before of my foot problem. Weird looking high arch and smaller then other foot. This is something that has only in a last 6 mo. or so developed.:sad::sad::sad:

 

[cajebe]

re: Painful cramping & twiching!

anyone?:sad:

 

[archie]

re: Painful cramping & twiching!

Someone should at least comment on your post. For what ever reason this is a fairly stanoffish group to newbies. I'm sure they have their reasons. People on thie forum are not here for happy reasons. Reliving pain and suffering through newbies must be difficult. Still, courtesy is courtesy.

 

[joelc]

re: Painful cramping & twiching!

Okay, since you are upset no one has commented I will try. It is hard to know what you are experiencing, we are not doctors and the primary purpose of this forum is support for those with an ALS diagnosis. We don't really know what to say to those who have unexplainable non-ALS symptoms.

Twitching and the other symptoms you have listed are not symptoms of ALS. I hope you can find a doctor that can give you a diagnosis and cure. Sorry about the lack of responses.

 

[Phil M]

re: Painful cramping & twiching!

And since we are not doctors. Nobody is going to say..yep..you have ALS! From what I hear, and from what you can read all over the internet. Your pain, and tingly feelings is not consistent with ALS. It always amazes me how people always assume the worse when something is wrong with their body. I told myself that its probably nothing, and did not google ALS until a good while after I got my Dx. You couldn't be further from the truth when you say people here aren't nice. This is the nicest group I have found. Good luck.

 

[trfogey]

re: Painful cramping & twiching!

Someone should at least comment on your post. For what ever reason this is a fairly stanoffish group to newbies. I'm sure they have their reasons. People on thie forum are not here for happy reasons. Reliving pain and suffering through newbies must be difficult. Still, courtesy is courtesy.

I notice you didn't give an opinion about what appears to be ailing cajebe. Why is that? Maybe other folks declined to answer cajebe for similar reasons. And it is quite discourteous to impute bad motives to people you are asking for help. Nobody here owes answers to anyone.

For the original poster -- your symptoms don't sound like ALS to me, and the normal EMG would tend to confirm that conclusion. They do resemble the symptoms of BFS/BCFS, however, and you may find some useful information about that disorder on the AboutBFS website, which you can find by searching on the Internet. Otherwise, my advice to you is to pester your current doctors until they give you some answers. That is what you are paying them for.

 

[sadiemae]

re: Painful cramping & twiching!

At least you do not have ALS right now. What I wouldnt give for a DX like that. With my husband, there was no doubt it was ALS, as his EMG was dirty. But even before the EMG, the doctor said that I was right when I said I thought he had ALS. We waited a long time to go to the doctor, as we had no insurance, and I do not regret that at all. A day without an ALS DX is is a good day. Once you have a DX, it goes downhill from there. Be grateful, and enjoy this day.

 

[archie]

re: Painful cramping & twiching!

I notice you didn't give an opinion about what appears to be ailing cajebe. Why is that? Maybe other folks declined to answer cajebe for similar reasons. And it is quite discourteous to impute bad motives to people you are asking for help. Nobody here owes answers to anyone.

For the original poster -- your symptoms don't sound like ALS to me, and the normal EMG would tend to confirm that conclusion. They do resemble the symptoms of BFS/BCFS, however, and you may find some useful information about that disorder on the AboutBFS website, which you can find by searching on the Internet. Otherwise, my advice to you is to pester your current doctors until they give you some answers. That is what you are paying them for.

First trfogey I am new to this site and would not presume to have the knowledge the senior and older members do and hence be far better to answer the OP's question. Second please point out to me what bad motives I imputed. If anything I offered some speculation as to why such responses were lacking and after re-reading them find nothing offensive. If there were I certainly would appreciate your interpretation. Third, as these are volunteer members of this forum I feel that answers are indeed owed to those who ask from those who know. That is a main function of a support group. People who ask such questions are frightened, anxious, impatient with a long costly diagnostic procedure so they ask lay "experts" . As non- professional volunteers and not MD's it easy enough to draw on your vast wealth of information as lay people and offer support to people who ask. And of course you all have the right to not answer. ALS is a terrible terrible disease and to break opinions that might alleviate a little bit of stress down to what is owed and not owed is a bit beyond me. Good day to you sir. I hope I have not offended you further.

 

[archie]

re: Painful cramping & twiching!

Okay, since you are upset no one has commented I will try. It is hard to know what you are experiencing, we are not doctors and the primary purpose of this forum is support for those with an ALS diagnosis. We don't really know what to say to those who have unexplainable non-ALS symptoms.

Twitching and the other symptoms you have listed are not symptoms of ALS. I hope you can find a doctor that can give you a diagnosis and cure. Sorry about the lack of responses.

joelc, I have read many of your posts and they seem to me to be a nice mixture of wisdom and wit. I didn't know there was dichotomy between those who had ALS and those who my think they have ALS as far as the purpose of this forum. I can understand that. But as I read more and more into this forum I see many many undiagnosed, with fear in their questions not knowing what to expect. Somewhere in this forum is a copy of the gold standard ALS diagnostic procedure as administrated by a neurologist. Perhaps the questioners could be referred there. But I suspect what these questioners want most is some human insight into a human's early experience with ALS. I realize misinterpretation by an anxious questioner is a real concern. Thanks for listening.

 

[trfogey]

re: Painful cramping & twiching!

First trfogey I am new to this site and would not presume to have the knowledge the senior and older members do and hence be far better to answer the OP's question.

What makes you think that any of us knows what is wrong with the original poster? Thinking that is like thinking that anyone who can sit in an airplane seat is qualified to fly the aircraft. The original poster is under the care of a neurologist -- she should be directing questions about her condition to that neurologist.

Second please point out to me what bad motives I imputed. If anything I offered some speculation as to why such responses were lacking and after re-reading them find nothing offensive. If there were I certainly would appreciate your interpretation.

Well, calling the forum "standoffish" and implying that members of the forum are discourteous for not answering this post may not be offensive to you, but I'd contend that you aren't an objective judge of your own offensive behavior. As you say, you are new here and you are not knowledgeable enough to be able to draw those types of conclusions. Keep that in mind the next time you are tempted to offer "speculation" about those whose support you are seeking.

Third, as these are volunteer members of this forum I feel that answers are indeed owed to those who ask from those who know. That is a main function of a support group. People who ask such questions are frightened, anxious, impatient with a long costly diagnostic procedure so they ask lay "experts" . As non- professional volunteers and not MD's it easy enough to draw on your vast wealth of information as lay people and offer support to people who ask. And of course you all have the right to not answer. ALS is a terrible terrible disease and to break opinions that might alleviate a little bit of stress down to what is owed and not owed is a bit beyond me. Good day to you sir. I hope I have not offended you further.

Your sense of entitlement is truly mindboggling. What gives you any type of claim on anyone here? You've paid nothing for the advice you seek, so you haven't purchased a claim. You've contributed nothing of value to the forum as a whole, so there is no claim based on reciprocity. You come here purely as a supplicant, yet you assume the right to judge those that you are asking for help. Great work, if you can get it, but it does make look like an ungrateful jerk.

Consider this before you continue making yourself looking even more pompous and even more ignorant than you already have -- how much advice would you be giving on this forum if you couldn't use your hands to type with? That's the situation Joel and I find ourselves in every day. If "fear, anxiety, and impatience" over a remote possibility buys you the right to be snotty and judgmental toward us, what does living with the daily reality and still showing up here to answer questions for ingrates like you earn us? Other than a massive pain in the gluteus, that is?

 

[olly]

re: Painful cramping & twiching!

ok,i for one try not to respond on this part of the forum unless i see a poster with real concerns that i can identify with mnd.

yes archie,if new posters took the time to look through the threads at the top of the page half would not even bother posting.
we have asked many times for new comers with no diagnosed to do this.
some of us like us oldtimers on here have gone through the "twitching" posts and commented till were fed up of it.
were not rude or standoffish,we just need to conserve our energy for people in real need,plus our own needs.
remember also many have difficulty with there hands and only respond to a certain few posts..........i use one finger to type.

my answer to the origional poster is it does not sound like als,it does not start with global symptoms.

 

[archie]

trfogey, you have shed immeasurable enlightenment.
oily, I read the posts on twitches and I also recognize the likelihood of twitches actually turning out to be ALS related is unlikely. I do understand that the responses would be mostly wasted.
I am a newbie to this forum and will have my final two tests within the month that hopefully will give me an indication of whether I have ALS or not. After two 911 runs to the emergency room in the past three days I remain frayed. I do not wish to pursue this matter. It's not my thread to begin with. My apologies to the OP for hijacking it.

 

[joelc]

See Post #1.