AndyDJX

Andy, your symptoms sound VERY similar to mine. I've been twitching since June 2022. Numbness and pain primarily in my arms, mostly my right arm. 4 clean EMGs to date, and reflex and "clinical" strength is "normal"....yet my symptoms continue to progress day to day...week to week. Curious to hear if there's been any DX for you.

Hi Andy, hope you are well. Reading your posts, I was amazed to see the similarities in our situations. I would really appreciate speaking to you. If you're still around, could you send me an email at [email protected]? I am really struggling with my situation and have a few questions. Greatly appreciated. Gabe

Hi Andy, I've been reading your posts with great interest since I can relate to almost all of your symptoms.

It would be great if you let us know what your doctors said about the denervation-reinervation issue found in your muscle biopsy. If you have an email or a Facebook account so we can be in touch please let me know.

Thanks.

Hi Andy, I can't send private messages here but I was I retested in getting in touch with you. It's about talking to you about our symptoms that are so common and seeing if there are things that helped. My email is [email protected]. Would be great to get in touch with you. Cheers, matt

Hi Andy, thanks for sharing your story. It is incredible how similar to mine your symptoms are. I mean, the whole thing including muscle tiredness, uncontrollable shaking (you should see me in a plank position!), weakness right after exercise and the list goes on. I have tried a lot of things from natural remedies to Lyme disease related antibiotics. Have been seen by a few neuros and had an emg and mri... Nothing comes up yet I continue to feel abnormal. Lots of back pain and cramps when I flex muscles too. Have you tried anything that helped? Any diagnosis by now? Thanks for sharing your story, sometimes knowing there are others out there like me is a form of reassurance.

So Andy how goes it...
I'm just a little over 7 years of widespread twitching...did you find out anything more?...

Hey Andy,
my English is not very good but I hope that you can understand. Here and in another forum I saw that you describe all the symptoms that I have and I - flickers in my periphal vision, vision floaters, see my pulse in my right eye, tinnitus in my ears, muscle fasciculations in all body, muscle weaknes. I want to contact if you have the time and willingness to share information about how each of us fight with this bad situation. I hope You are better now.

Best Regards,
Georgi
[email protected]

by the way, I'm also from Boston.

Hey Andy, I just wanted to send you a message because I've been having bodywide twitching for the past 6.5 months, including my tongue which really freaks me out. At this point, I've had a clean EMG but my twitches are out of control. Literally tongue to toes. At any given time, I can feel a tug, twitch, pull, pop, vibration, flutter in some muscle in my body. At night, I have several going off at the same time. Usually my back, thighs, calves. I get tongue zaps fairly regularly as well. Can you relate to this? I have not noticed any weakness as of yet. Any advice you can give would be great as far as anything you've noticed that helps with twitching. I was hoping that after 6 months, this would have started to subside but it is definitely worse now than its ever been. My twitching has definitely progressed as each month passes. -Matt

Andy -- Thanks for your reply to my inquiry ... I am visiting St. Elizabeth's Hospital in Brighton ... though intend to seek a second opinion at a downtown Boston hospital. Again, thanks.

well that stinks i hate when you pay all the money and they are specialist and dont even follow up with basic test.. , even if not dealing w issues and just a followup..yah i need to be more agressive also, my friends told me thats my problem bc iam so quiet and laid back so put all that together with a women who is in complete scared terror, its not the best of communication. i go for the ncv the 9th for my legs.. which i thught was super strange bc i told her my arms fall sleep from figertip to sholder ... so i wrote her a long letter of my physical symtems to get a better understanding . but according too al the post i read here time is good if things dont get worst and in your case 2 years.. so probably not als,,, iam sure we are both fine.. keep in touch let me know what happens

I have been to a neuro last week and i do not have much atrophy she said.. (i didnt even know i had ANY of that haaha).. my twitchs startd in dec and followd with spams n back in jan and weakness in feb now its aug and last month a i a slew of new issues, like balance, new neuro seen me 10min, did a lil exam and said idk.. but iam getting nvc and emgs as all my blood work is good, i have the numbness in my hands like i seen ur old post.. and i had the EXACT same thing with my face when i hold smiles etc etc..good thing is yours been 5 yrs whats ur next step?

I heard about a few patients who has been suffering from that als syndrom some time after they took chemo and radiation.This is not an als cause they expecting problems for 8-9 years.I suppose that their condition is due to radiation but i dont know will it get worse or maybe stop.
Doctors have not found anything abnormal in neuro exam for a half of a year.Emg without denervation but i dont know will it appear or not.I m very afraid because i ve read about als in some cases with lymphoma and leukemia and i ve not done radio only chemo.That 's a big problem cause doctors dont know why it happen,is that chemo or not.
p.s Thanks for the answer.You have not answered for a while.I thought i offended you with my first message bout condition

Hey Andy.I read your topics after you ve said that you ve got lymphoma.Do you think your symphtoms may also cause chemo?Did it finished much time ago?And how is your lymphoma tests?Hope you ll be fine.

Yeah I have read your posts and would agree - very similar stuff. Here's to hoping we have the worst cases of BFCS ever!