25yo Male's Experiences with Twitch/Pain

[yodaiguy]

I am 25 year old male, slightly overweight but it overall good health. I started twitching October 31st, 2010 in my right pinky which spread body wide in about 3 days. In December the pain in my calf set in and has not gone away since.... In February I had my first neuro appointment who stated that I have no serious neurological symptoms and to come back in 8 weeks. In April 2011 I returned to the neurologist with the same symptoms, who once again refused to order an EMG stating that I do not have anything serious but he decided to order an MRI to see if my back was causing the pain. In July did MRI lower back everything came back normal. Now here's where my worrying started again. In late June I had 1 night of violent cramps in my right foot on the little toe side (edge of foot), it hurt enough that I'd wince or hold my breath every time. Since that day my right foot is uncomfortable to walk on, especially in the morning. I continued to go to gym, when I noticed my knees both left/right were throbbing while doing squats. The next day at work I went to go down the stairs and had intense pain in both knees especially the left, I literally had to go down the stairs on my butt. This knee/foot pain remains but in bearable now. I have no weakness at all, I am stronger than I was last October but my joints in my knees/right foot and thumbs are very painful. I returned to the Neurologist on August 02 this month, who performed my third neurological exam. He once again said I have absolutely no weakness/tremors and diagnosed me with BFCS. He stated that he ordered me a EMG at Toronto General Hospital to rule out nerve damage, and referred me to a Rhumatologist to determine if the pain is arthritis. I asked him about the cramping in my foot causing the pain, he said that pain is not a neurological symptom he'd be looking for, especially joint pain. I am in full panic mode, I went 10 weeks without googling anything about my symptoms or visiting these or the *** boards, but I'm on both daily now to reassure myself. I don't agree with his diagnosis of BFCS because I've NEVER been able to find anything about pain lasting this long and progressing, only thing keeping me sane is that I haven't found anything about ALS progressing like this either. Any advice/support would be greatly appreciated. I don't know what to do anymore, I am in pain daily with no signs of relief.

 

[christinasgirl123]

I'm so sorry that you have these terrible pains too. I suffer alot from pain, esp. in the area around my knees/hamstrings. I've read here many times that the pain becomes better with the months/years, and I hope so for us , too. Till then, I find Ibuprofene works best for it. Right at this moment my left leg is hurting like hell since almost 7 hours, and I already needed two Ibus..

 

[angusglover]

I also have pain, but mine is all over. You are correct however, in that ALS DOES NOT present or progress this way. EVER!

 

[nomad37]

The neuro should have done the emg along with the MRI! Why dave doubts the doctor is simple, the medical facility in canada sucks. End of story. Dave good luck in your EMG it will be fine i am sure! your symptoms seems more on the arthritis area.Congrats on the clean MRI.All the best.

 

[RainCat]

Pain and cramping has been part and parcel of this condition since the onset. Its also quite common for PNE/BFS Neuromyotonia to be a side issue with other autoimmune conditions like ME /CFS and Fibro. Check out my LDN mag phos, its the only thing that has given me constant relief from the pain stiffness and cramping.

 

[yodaiguy]

Neuromyotonia sounds a lot like my symptoms since if affects lower limbs more than upper. The fear of *** is not as bad as it was last October when I first googled "muscle twitching," but the continuous pain in my legs/joints,is what had me worried. Just seemed strange that my symptoms would last for so long, I couldn't find much about continuous pain/problems on the BFS boards. Most posts said pain goes away after a few days/weeks, but I'm relieved and saddened that a few people here have symptoms similar to mine. I'll write a brief summary of symptoms, just to see if anything sounds familiar, or if you can provide anymore feedback. - October 31, Twitching started. Twitching has basically stopped, I get "pops" now maybe 100 a day from 1000's when it started. Not as noticeable anymore. - December 2010, Right calf extremely tired after running. Can't run anymore because it takes WEEKs to recover after a run. Calf strength is fine, but calf does tire easily. - January 2011, Left side of face/neck twitching extremely bad lasted about a month would cause my left side of face to burn, feel numb. Symptom has stopped. - March 2011, Right wrist extremely sore, extreme pain when PUSHING on objects. Used a brace for workouts. Symptom has stopped. (This may have been an injury from sports.) - June 2011, Right foot cramped, been "uncomfortable" to walk on since. Some days are better than others, pain has spread to the joints of my toes on the right foot. No gait change, just a lot of discomfort but I manage. No weakness, I test almost everything daily. - July 2011, Knee pain. Extremely painful when going down stairs/squatting. Pain is more of a discomfort now but will kick in if I do too many flights of stairs. Squats at the gym is impossible, it's excruciating. No weakness just pain/discomfort. Thank you everyone for your replies I really appreciate the support, and Wanderer I agree about the Canadian Health Care symptom being GARBAGE. I've been going to doctors for almost a year, no diagnoses except BFCS, no medication, no explanation, no support, just test after test being scheduled with 3 month wait times between each one. It's extremely frustrating.