VanessaGirlsarahs
Member
Well, I've been lurking for awhile, and I thought it was time that I give a brief outline of my story of CFS. Hope it's helpful to those of you just recently diagnosed, or still looking for a Dx.I am a 45 year old mother of 2. My "journey" began on Nov. 11, 2003. My inital onset wasn't actually with twitching. It started with an intense burning "hotspot" in my right calf, along with muscle stiffness. Over the course of about 2 weeks, it spread throughout both legs, and I developed extreme tiredness. Every muscle in my legs felt as if I had overexercised, and I had no "gas" in my engine - muscle shutdown when I climbed the stairs or driveway, or tried to run...just nothing there!..and I would have to stop and start all the time. I was also limping due to the pain in my right calf. Then the twitching began. All of this developed after a bout with a flu-like virus that lasted about 3 weeks, which I am now convinced was the trigger. My doctor was stumped...said it could be Fibromyalgia, but the twitching thing didn't add up. I have a family history of Fibromyalgia and RA, and my dad had Lupus and died at 55. I had always been extremely healthy up to this point. I tried anti-depressants and anti-anxiety meds, but they didn't help and made me feel really zoned out. My doctor referred me to a rheumotologist who ruled out Fibromyalgia, but was concerned because my ANA (antinuclear antibody) blood test was at a titer of 1:160 (which is 4 x normal). That is an indicator of autoimmune disease. He referred me to a neurologist. The first neuro I saw told me it was probably Fibromyalgia, and I should come back if I started aspirating my food....very not funny! My GP sent me to a better neuro in a larger city, and he knew exactly what it was and confirmed my diagnosis with an EMG. He prescibed me with Gabapentin. I immediately went to Costco and filled the prescrip. Within a half hour, the burning pain and twitching in my calves lifted and I had relief! All of this took 18 months. I have also been examined at the Neuromuscular Clinic at the University of British Columbia in Vancouver, and had the diagnosis confirmed there as well. My diagnosis is Cramp-Fasiculation Disorder, or Neuromyotonia...docs said it was the same thing, a Peripheral Nerve Hyperexcitably Disorder. Benign in nature - that is to say, not degenerative. However, it is not benign in the way it affects your life. I think a lot of people on this board have trouble accepting that BFS, or CFS, or Neuromyotnia, or Isaac's Syndrome or whatever you want to call it is an actual condidtion in itself, and NOT something that leads to the dreaded ALS. Any of you who have sat in a neuro's waiting room with actual ALS patients knows that what you have is not even an inkling of what they have.That said, I think the real hang up happens with the word "Benign". It seems to have a connotation that means "insignificant" or "meaningless". Not so...it only means that this disorder is, Thank God, not degenerative. So, that means that we have to find ways to cope with it and treat it and manage it so that we can live full and interesting lives. When people ask me what my health problem is ( I usually don't tell people, but sometimes I have to explain things), I say "Neuormyotonia...it's a harmless condition that affects the way my muscles fire and I get a lot of twitches. I'm pretty healthy otherwise." Trying to explain what fasciculations, myokymia and parasthesias are is a little tedious, and usually too much information for people!I take 2100 mg of Gabapentin a day, 3.5 mg of Zopiclone at night to help me sleep, and Extra Strength Tylenol if I need pain relief for muscle soreness. The 2 neuros that I saw for diagnosis said that many times this condition can last for 2-3 years, but if it is around longer than that, you are probably stuck with it for life. They also both said that it is likely an autoimmune disorder that was triggered by a virus. One explained it as the immune system being in hyper-drive, not realizing that the original virus is now long gone, but it is still attacking the VGKC (voltage gated potassium channels). It is this "miscommunication" that causes the small muscle fibers to "fire" without cause - hence the twitching, then the cramping, then the pain!Management is the key...healthy living, exercise, supportive friends, good medication plan, meditation and relaxation..and most importantly...NOT dwelling on it. Lots of people have worse things than this, and I am living proof that you can live with this condition and still live well. Whew! long post...sorry!