New Member, but Old Twitcher (17 years)

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

New Member, but Old Twitcher (17 years)

Postby Nytviolet on June 19th, 2014, 6:33 pm

About 19 years ago, I had just recovered from 3 years of Chronic Fatigue Syndrome (my doctor finally found high Epstein-Barr titters). During the CFS phase, I had gained about 30 pounds, and was delighted to have my energy back, so I embarked on a rigorous exercise program and worked up to running 3 miles daily, lifting weights, and playing tennis every weekend. I shed the weight (plus an additional 10 pounds) and looked / felt better than I'd ever felt. About 2 years later (1997) I was about a mile into a run on the treadmill at the gym, and I told my husband, "I don't know what's wrong with me, but my legs feel like rubber, and I'm just exhausted!" He felt that I was probably coming down with a cold/virus, and suggested a few days without exercise. My energy never returned. Within a couple weeks, I began to experience widespread fasciculations, feelings of weakness in my arms and legs, and also noticed that I could not fully empty my bladder (there was also some affect to the muscles involved in, um, orgasm). I went through a year of terror obsessing over MND, going from doctor to doctor, having an MRI of the brain and spinal cord (no lesions), and a total of 4 neurologist visits (2 separate neuros were involved). Although an EMG was never done, my strength tests, peripheral nerve conduction, reflexes, etc. were perfect except for slight hyperreflexia (which the doctor said was not unusual, given my running / tennis). The fascics continued for so long that I eventually forgot about them and (despite some nerve damage from Heaven knows what), continued my life at a slower pace, finally receiving a diagnosis of Fibromyalgia in the Fall of 2000. Fast forward to today... for the past month (after dealing with a great deal of stress in my personal life, the loss of my father and a half-brother), I feel like the same inflammatory process or virus is "awake" again. I work in Social Media, and spent about 9 hours daily on the computer. I notice that my left arm and leg "feel weak", and the fascics are really popping (my back, my calves, my abdomen, my feet, and my left hand in particular feels achey (almost arthritic). Here's the sad part... I've started obsessing over MND again, and spend most of the day / night walking around on my tip-toes / heels, checking the dexterity in my fingers / hands (seems fine, but they FEEL crampy / achey). In my humble opinion, I feel that I've allowed my stress to get to the point where it's caused an inflammatory response in my body, and I'm absolutely obsessed with MND. I went to my primary care doctor's office (where I see the PA), and she has ordered an x-ray (can you believe it? a friggin xray!) of the C-spine and T-spine. Having anxiety, I was truly hoping that she would immediately refer me to a neurologist, but alas, she did not. Now I'm living in a state of dread, waiting for my next appointment in two weeks, and then the possible referral to a neuro which will take another 1-2 weeks, etc etc etc. I know that BFS does not turn into MND, but I can't stop thinking about it. I often wonder if I was originally misdiagnosed, and could have a somewhat benign, slow-moving form of MS (which, believe me) I'd take any day of a MND. Afterall, I did develop neurogenic bladder, loss of O-reflex, and have ocular migraines that leave me with blurred vision in one eye for anywhere from 15" to an hour. If there is anyone on here who has also experienced aching / cramping / perceived weakness / other symptoms along with their fascics, I sure would appreciate hearing from you. God bless my fellow twitchers! :mrgreen:
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
User avatar
Nytviolet
Selfless giver of time
Selfless giver of time
 
Posts: 122
Joined: June 11th, 2014, 11:48 pm

Re: New Member, but Old Twitcher (17 years)

Postby Nytviolet on June 20th, 2014, 1:10 pm

Guess I'm the only one having these symptoms... I might have better luck on the MS Boards. Best Wishes to your all :)
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
User avatar
Nytviolet
Selfless giver of time
Selfless giver of time
 
Posts: 122
Joined: June 11th, 2014, 11:48 pm

Re: New Member, but Old Twitcher (17 years)

Sponsor

Sponsor
 


Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 3 guests