k2626
09-12-2008, 07:06 PM
Hi guys. My muscle twitching is real bad today,even had it in my chest. Has anyone else been scared they had ALS? I am getting nerve testing done (my primary dr is SO thorough). I have been to two neuro that did the basic reflex test and said whatever is going on it not neuro related-neither suggested further testing.I just have SO many little twitches in my muscles and that coupled with the migratory pain and extreme cracking makes me think I have ALS-especially since everything else is coming back normalWOuld love feedback
Sponsor
bluelakelady
09-13-2008, 11:31 AM
hi k,
i think it is rather normal to have the fear it is something really scary. always best to be sure it is not.
i also know the twitches, migratory pain, involuntary jumps, etc. are, for me, fibro. been doing it for years with no damage done. now i just relax and trip on the way it feels. the main arena for the past couple of years is my head, shoulders and upper body. it is visable to others. sometimes my hands too. like i said, i just trip on it now. no more fear.
remember, worrying about an unknown is using up precious energy and it is feeding fibro. my grandma used to say, worry never solved anything.
peace,
bluelakelady
i think it is rather normal to have the fear it is something really scary. always best to be sure it is not.
i also know the twitches, migratory pain, involuntary jumps, etc. are, for me, fibro. been doing it for years with no damage done. now i just relax and trip on the way it feels. the main arena for the past couple of years is my head, shoulders and upper body. it is visable to others. sometimes my hands too. like i said, i just trip on it now. no more fear.
remember, worrying about an unknown is using up precious energy and it is feeding fibro. my grandma used to say, worry never solved anything.
peace,
bluelakelady
k2626
09-13-2008, 03:21 PM
Thanks blue/ I guess I worry even more because I dont seem to have the trigger points!
DeBeachSiren
09-14-2008, 06:01 AM
Hi,
I agree with Bluelakelady. Don't let that consume you.
Hugs,
AnneBoleyn
I agree with Bluelakelady. Don't let that consume you.
Hugs,
AnneBoleyn
bluelakelady
09-14-2008, 11:48 AM
hi k,
remember there are no for sure rules with fibro. trigger points and all the other stuff is what they think they know now about it. doctors learn as they go. and science changes it's mind about everything when new knowledge is discovered.
when it comes to how fibro manifests in each human body it is very individual with bits that cross us all.
be cool.
peace,
blue
remember there are no for sure rules with fibro. trigger points and all the other stuff is what they think they know now about it. doctors learn as they go. and science changes it's mind about everything when new knowledge is discovered.
when it comes to how fibro manifests in each human body it is very individual with bits that cross us all.
be cool.
peace,
blue
Moonlady
09-14-2008, 02:10 PM
Now you have me worried. I try not to read up too much on my symptoms anymore because of this.... I am afraid I will be putting things in my head...lol. I have an appointment with a Neurologist on Oct. 1st.
I have bad muscle weakness, just walking across the floor or lift my arm up to get something out of the cabinet makes it feel like I have been walking or lifting my arm up forever. I had myself convinced it is Fibro because I get bad pains here and there and everywhere, I was getting bad pains that felt like it was in the bones too but started taking Calcium w/ Vit D and those are not as bad anymore. I have my good days and I have my bad days. Sometimes I can walk forever and be fine, other times I can barely move.
My latest pain is when I have my legs up and go to cross one on top of the other, it feels like it is breaking the ankle on the bottom... feels like the bones are separating or something, really weird.
I have bad muscle weakness, just walking across the floor or lift my arm up to get something out of the cabinet makes it feel like I have been walking or lifting my arm up forever. I had myself convinced it is Fibro because I get bad pains here and there and everywhere, I was getting bad pains that felt like it was in the bones too but started taking Calcium w/ Vit D and those are not as bad anymore. I have my good days and I have my bad days. Sometimes I can walk forever and be fine, other times I can barely move.
My latest pain is when I have my legs up and go to cross one on top of the other, it feels like it is breaking the ankle on the bottom... feels like the bones are separating or something, really weird.
k2626
09-14-2008, 02:51 PM
My pains feel as though they are my bones too. What scares me is the twitching-it just started a few wks ago and I have it all the time. Its just hard to not have these things consume my mind when I have no dx yet, not even fibro
Moonlady
09-14-2008, 05:57 PM
I have no dx yet either... no insurance and no money! I am going to the cheap hospital on Oct. 1st and hopefully it won't cost to much to get a dx.
I don't get twitches often, maybe once in a while and it is usually in my pointer finger on my right hand, my finger will jump and move around all on its own... can't even hold a cigarette with it without dropping it. It comes in spurts, right now no twitching and hasn't for at least a month. I get jumpy nerves once in a while where you can physically see the nerve jumping, but not a whole lot on that either.
I also go through phases where I can't focus correctly, I guess that is the word for it, during those times I can't even use a fork because I continually hit my teeth with it. I bump into people or step on their toes and heels, I run into walls or doorways or trip over rugs or sometimes just the floor itself seems to jump up and trip me... darn floor!!
So, while guessing it is Fibro, I really don't know. The more I research the more I want to tell the kids and hubby what I think it is or isn't and when I do that, they think I am making things up by researching and saying something about what I think I have from the research and not actual ailments etc. so I just try not to go there anymore.
I don't get twitches often, maybe once in a while and it is usually in my pointer finger on my right hand, my finger will jump and move around all on its own... can't even hold a cigarette with it without dropping it. It comes in spurts, right now no twitching and hasn't for at least a month. I get jumpy nerves once in a while where you can physically see the nerve jumping, but not a whole lot on that either.
I also go through phases where I can't focus correctly, I guess that is the word for it, during those times I can't even use a fork because I continually hit my teeth with it. I bump into people or step on their toes and heels, I run into walls or doorways or trip over rugs or sometimes just the floor itself seems to jump up and trip me... darn floor!!
So, while guessing it is Fibro, I really don't know. The more I research the more I want to tell the kids and hubby what I think it is or isn't and when I do that, they think I am making things up by researching and saying something about what I think I have from the research and not actual ailments etc. so I just try not to go there anymore.
k2626
09-14-2008, 06:39 PM
Yeah I hear you I think I have dx myselt with 10 things since this started do to my research-laugh. I need to stop researching the more scary stuff!
I bump into things and lose my balance too, but not sure if I have always been like that. I had an MRI to rule out MS but from what I understand one can only really verify that through spinal tap-which I dont want to get. The nerve testing will be painful enough!
You are lucky you dont get a lot of twitches that happens every day for me now... it scarese me a lot
I bump into things and lose my balance too, but not sure if I have always been like that. I had an MRI to rule out MS but from what I understand one can only really verify that through spinal tap-which I dont want to get. The nerve testing will be painful enough!
You are lucky you dont get a lot of twitches that happens every day for me now... it scarese me a lot
Twinkie50
09-14-2008, 09:35 PM
I had severe muscle twitching for years and went to a neuro and he told me over and over again that I did not have ALS or MS, but I had myself convinced I did. Well that was 12 years ago and I am still here!!!! It can be part of FM and your anxiety in worrying about it is not helping. I can tell you that from experience. For sure go thru the testing, but know that if everything comes back ok, it can definitely be from the fibro and try to relax. I know its easier said than done, but in time, the longer you have this illness, the less you worry when you see symptoms come and go and return again and yada yada yada !!! ;) Its a hard disease to live with, but you'll be ok !!!!!
MaryAnn
MaryAnn
k2626
09-14-2008, 10:20 PM
Thanks so much twinkie. Do you think a standard neuro test that tests reflexes would show ALS? I have seen two neuros that said "you are fine its not neuro related" but they did not do any testing aside from the standard in office. How can they be sure?!
My GP scheduled my MRI after hearing about this which was fine and he is the one that wants me to do the nerve tests...
My GP scheduled my MRI after hearing about this which was fine and he is the one that wants me to do the nerve tests...
Twinkie50
09-18-2008, 12:03 PM
My neuro just did standard neuro testing in his office - I did have an MRI of the brain to rule out MS - he was so patient with me cause I went to him for a few years and everytime I would go I would be in a total panic worrying about the ALS. Eventually, the twitching stopped and I somehow learned to live with the symptoms and not go into major panic mode everytime one popped up. That was over 10 years ago. I think if 2 neuro's are telling you its not ALS, its not. However, if it will make you feel better to have the nerve testing done, then have it done if it will give you peace of mind. I feel for you - you sound exactly like me years ago. I lived in a total state of panic and anxiety. I also was not sleeping either for a few years. My neuro tried me on a few different antidepressants - 5 I believe before one helped with no side effects. I have been on 100mg of Trazadone at bedtime for 10 plus years and when I started to have better sleep, my anxiety lessened and I was able to deal better.
MaryAnn
MaryAnn
k2626
09-18-2008, 02:56 PM
Hi Twinkie-- I had the nerve testing done yesterday and it was fine-thank God. So the only thing left really is to follow up on my thryoid and if that is okay then I think we will chalk it up to fibro or/and anxiety. I just cannot believe the sharp shooting/burning/stabbing pains I get all over my body could be caused from this!