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Progressing ?

PostPosted: October 21st, 2014, 3:19 pm
by Bibi
I have Twitched for 6 months now , left foot every Day All Day and Twitches All over , back everyday but not All The time , face , arms etc. I saw A neuro 28/8 he saw The Twitches in The foot and asked me if i had cramps several times. At that time i did not have A lot cramping , but i have always had periodes of cramping in feets and intold him . I Got an EMG in left leg ( shin ? ) and left upperarm 18/9 and it was clean . But now i am so worried because i have cramps in left foot and twitching going crazy. I have A stiff feeling in Right leg and my Neck hurts . I am scared because i Think symptomes is progressing . I am going back to neuro 20/11 .

Re: Progressing ?

PostPosted: October 21st, 2014, 3:46 pm
by LKP1231
Bibi, yours sounds more like it could be issues with your back than mine does! Maybe when you see the neuro you should ask about that. And MRI of the back would show any problems that could cause cramps twitches and pain

Re: Progressing ?

PostPosted: October 21st, 2014, 3:57 pm
by Bibi
LKP1231 wrote:Bibi, yours sounds more like it could be issues with your back than mine does! Maybe when you see the neuro you should ask about that. And MRI of the back would show any problems that could cause cramps twitches and pain



Yes i Will ask him if it could come from my bak , i have had A frozen shoulder for almost 2 years and after that pain in back and hip. I Think i am so worried now because of The cramps , he sounded very concerned about that symptome. And the fact that i am now 6 months into this twitching worries me because i Think that if it is *** it Would show up from now .you know the teori that says that You could go up to 8 months with only fascikulations before other symptomes.

Re: Progressing ?

PostPosted: October 21st, 2014, 4:03 pm
by LKP1231
The specialist I saw yesterday said cramps are not an early symptom of ***. Cramps and pain either. I had cramps and pain in the beginning. My right thigh on the top always seemed to hurt. Except today which is weird.

Re: Progressing ?

PostPosted: October 21st, 2014, 4:10 pm
by Bibi
Thanks for your reply about your neuro visit and asking about cramps. And your thigh feeling better today , maybe you are feeling A little better after talking with The neuro ?

Re: Progressing ?

PostPosted: October 21st, 2014, 4:13 pm
by LKP1231
Not sure. I almost want the cramps or pain so I can feel it's not ***!

Re: Progressing ?

PostPosted: October 21st, 2014, 4:32 pm
by Bibi
LKP1231 wrote:Not sure. I almost want the cramps or pain so I can feel it's not ***!



Yes i understand You about pain , it Would be Easier to understand if your back hurts , but things doesnt always fit. When i had my frozen shoulder it started with pain in my forearm i had no pain in shoulder , i went to my Gp after 5 months and he Said that : pain lies . I couldnt raise my arm at All ad he Said it was my shoulder.

Re: Progressing ?

PostPosted: October 21st, 2014, 4:41 pm
by LKP1231
Makes sense. Your shoulder is involved when you raise your arm. I wouldn't mind if my back didn't hurt. As long as something related hurt or tingled or went numb. Something.

Re: Progressing ?

PostPosted: October 21st, 2014, 7:14 pm
by leaflea
Bibi,

I am in your age group. My neuro, MND specialist, DID ask me about cramps. I did have them and told him about it, common in feet and calves even before other bfs things, but sometimes intense ones that lasted maybe one minute in part of my abdomen, the same part I noticed my first twitches. The cramps started a few weeks before to the best of my memory. Pulling tight socks or shoes off can induce them. HE DIDN'T CARE. It did not change his assessment one bit. Since then, I cramp more, in new places (back, other parts of abdomen, forearms). It also confused me why he was interested and asking, but then didn't care when I said YES, I do have that. I think that the cramps in MND sometimes last hours with days of soreness afterward.

My mother cramps, and always has. Her cramps are now much worse than mine, but she never cramped as bad as I do at my age. I went with her to a neuro a few months ago. He said she has "common cramps." She has them all over, regularly - many times per week, and they are so strong they disfigure her while they happen - dystonia or spasms. They are very painful too. Still no MND. The neuro thinks there is a hereditary component to this bfs/bcfs/cfs Titchydoc said something to me in a PM about why cramps are to be EXPECTED with bfs. Nothing to fear or be surprised about.

I also had an unexpected increase in anxiety around the six and eight month marks, thinking I was just not quite out of the woods yet, and it would still come to get me. However, overall, I'm the same...just different :-) As if that makes sense. I am not worse in terms of no real weakness or atrophy, things just move and change. I am now at 12 months, and think I'm finally turning a corner. Staying away from the forum and facebook for a while may have something to do with that also. These things keep reminding us.

Re: Progressing ?

PostPosted: October 22nd, 2014, 4:37 am
by Bibi
leaflea wrote:Bibi,

I am in your age group. My neuro, MND specialist, DID ask me about cramps. I did have them and told him about it, common in feet and calves even before other bfs things, but sometimes intense ones that lasted maybe one minute in part of my abdomen, the same part I noticed my first twitches. The cramps started a few weeks before to the best of my memory. Pulling tight socks or shoes off can induce them. HE DIDN'T CARE. It did not change his assessment one bit. Since then, I cramp more, in new places (back, other parts of abdomen, forearms). It also confused me why he was interested and asking, but then didn't care when I said YES, I do have that. I think that the cramps in MND sometimes last hours with days of soreness afterward.

My mother cramps, and always has. Her cramps are now much worse than mine, but she never cramped as bad as I do at my age. I went with her to a neuro a few months ago. He said she has "common cramps." She has them all over, regularly - many times per week, and they are so strong they disfigure her while they happen - dystonia or spasms. They are very painful too. Still no MND. The neuro thinks there is a hereditary component to this bfs/bcfs/cfs Titchydoc said something to me in a PM about why cramps are to be EXPECTED with bfs. Nothing to fear or be surprised about.

I also had an unexpected increase in anxiety around the six and eight month marks, thinking I was just not quite out of the woods yet, and it would still come to get me. However, overall, I'm the same...just different :-) As if that makes sense. I am not worse in terms of no real weakness or atrophy, things just move and change. I am now at 12 months, and think I'm finally turning a corner. Staying away from the forum and facebook for a while may have something to do with that also. These things keep reminding us.


Thanks for your reply Leflea !

Thanks for mentioned about 6 and 8 months marks .
My mother also had cramps easily and i remember her talking about eye Twitches , and also she Said that sometimes it felt like she had A baby kicking in her abdomen , maybe that was A Twitch too. She is dead so i cant ask her. She also had auramigraines and so do i , i wonder if there is A corealation here ( hyperexitabily ) i am not A doctor and dont know much of nervesystem , it is just A thought.
Glad to hear that You are feeling better at 12 months !
Bibi

Re: Progressing ?

PostPosted: October 22nd, 2014, 3:28 pm
by leaflea
I'm sure what you said about your mom and baby kicking was probably a form of bfs! That is the first twitch I noticed (EXACTLY like a baby kicking) besides a few eye twitches and leg/feet cramps I've had for many years. I mentioned the anxiety at 6 and 8 months as a warning. I expected a relief, so it was a surprise when they increased at those milestones. But, it has to do with getting new symptoms or changing symptoms at those times, it is like I was MORE aware. But, those spikes passed pretty fast. Hope so with you also.

Re: Progressing ?

PostPosted: October 22nd, 2014, 4:52 pm
by Bibi
I also had an unexpected increase in anxiety around the six and eight month marks, thinking I was just not quite out of the woods yet, and it would still come to get me. However, overall, I'm the same...just different As if that makes sense. I am not worse in terms of no real weakness or atrophy

My problem is that i fear that now it Will come and get me , i Think ok ,You an Twitch 6-8 months without weakness , but now it will come . And then i Got The cramps and issues with my Voice , and try to Tell myselves it must be from anxiety But i really dont believe . Went for A long Walk today , it helps me When i feel depressed and anxious .

Re: Progressing ?

PostPosted: October 22nd, 2014, 7:02 pm
by leaflea
I understand. I also have speech issues, slurring and people notice I am more quiet. I feel like I don't want to talk. But it seems we are both fine as hard as it is to believe. BFS is a *beep* and cruel disorder, but it could be much worse.