Hello again

[Robynnblue]

I've stayed away in hopes that it would allow some tensions to die down, and for my own anxiety level to decrease, which it has. When all this stuff first started, I had no idea where to turn for answers and support. Somehow, I guess because of my weakness and twitching, I ended up here with all of you. In which I managed to talk with some really helpful and caring people. I'm past the terrified stage, and now I'm just exhausted and frustrated. My symptoms now mainly include, pins and needles in the bottom of both feet, muscle twitching all over (sometimes constant after trying to walk around), my legs still feel very weak and awkward when trying to walk, my ankles feel so weak that it makes my feet feel like they arent attached to my legs. I have this strange tightness on top of my right foot, that goes to the same ankle and feels like I have a rubber band attached to my big toe all the way to the ankle, I dont walk much because of the weak feelings in my legs, and I still feel unbalanced. Oh and I occasionally still have some tremors in my right hand but not so much all over like I did.

I did finally have an EMG, just on my legs but I figured that was good enough since thats where the majority of my symptoms are, and from what he did do, it was clean. So no ALS at this time.

I only came back to post this for the ones who were wondering how I was doing or if I ever found out anything. And for scared people who come here looking for answers, I didnt want them to see my older post and freak out that my story just stopped abruptly.

Well thats about it, I'm mainly just dealing with the leg weakness, and limbs that fall asleep for no reason, I still have all over brisk reflexes, and still have the bilateral ankle clonus, but no real answers, but just wanted to let everyone no that I'm ok. Thanks for listening, blessings and huggs to everyone.

Robynn

 

[lydia]

Well Robynn, that IS good news. I know it is frustrating not having an actual label for what is going on, nor no alleviation of symptoms, but at least you have one answer so far: no ALS. What does your doctor suggest for now?

 

[safarhealthscihopeful]

you most likely have BFS

 

[Robynnblue]

Hi Lydia, good to hear from you. My neuro really didnt say what next, he just feels he has ran enough test to rule out anything sinister, and mainly he just wants me to focus on my anxiety and try to enjoy some of my life. If only it were that easy. The last tests that he ran were the EMG, and a Sed Rate to check for any inflammation, it was normal also. So yep, thats it for me and my neuro at this point. If I didnt have the walking issues along with the brisk reflexes all over and the clonus, I could just get on with things, but I do, so I have to figure out a way to function with these symptoms and pray they dont lead to something more sinister. Thanks again for responding Lydia


Robynn

 

[Robynnblue]

BFS is not something my neurologist would even discuss with me. He acted like I made a joke when I brought it up. He assured me that people absolutely can have benign fasciculations but refuses it as a diagnosis as a syndrome that involves tingling, numbness, burning, tremors, and all the other thing that come along with the twitching. And there arent many members on the BFS site with ankle clonus. But thank you for responding.

Robynn

 

[kathleenp980]

I've stayed away in hopes that it would allow some tensions to die down, and for my own anxiety level to decrease, which it has. When all this stuff first started, I had no idea where to turn for answers and support. Somehow, I guess because of my weakness and twitching, I ended up here with all of you. In which I managed to talk with some really helpful and caring people. I'm past the terrified stage, and now I'm just exhausted and frustrated. My symptoms now mainly include, pins and needles in the bottom of both feet, muscle twitching all over (sometimes constant after trying to walk around), my legs still feel very weak and awkward when trying to walk, my ankles feel so weak that it makes my feet feel like they arent attached to my legs. I have this strange tightness on top of my right foot, that goes to the same ankle and feels like I have a rubber band attached to my big toe all the way to the ankle, I dont walk much because of the weak feelings in my legs, and I still feel unbalanced. Oh and I occasionally still have some tremors in my right hand but not so much all over like I did.

I did finally have an EMG, just on my legs but I figured that was good enough since thats where the majority of my symptoms are, and from what he did do, it was clean. So no ALS at this time.

I only came back to post this for the ones who were wondering how I was doing or if I ever found out anything. And for scared people who come here looking for answers, I didnt want them to see my older post and freak out that my story just stopped abruptly.

Well thats about it, I'm mainly just dealing with the leg weakness, and limbs that fall asleep for no reason, I still have all over brisk reflexes, and still have the bilateral ankle clonus, but no real answers, but just wanted to let everyone no that I'm ok. Thanks for listening, blessings and huggs to everyone.

Robynn

Hello !
I am also a new member. Would a newcomer be warmly welcome here? Good day you guy !:mrgreen::roll:

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[/URL]

 

[Al]

New members are always welcome but not when they dump advertising links in their post. We don't do advertising here.

AL.

 

[Robynnblue]

Just wanted to clarify something in my post at the top. When I said I was still dealing with leg weakness, I didnt mean clinical weakness, I meant my legs still feel weak and fatigued. Just wanted to say that so there is no confusion if someone who is undiagnosed and browsing the site. Thanks Becky