ZephyrFun888
New member
Hi all,I'm newly registered on for this forum, but have been reading for the last month or so. It's great to have a chance to tell my story to people who can really get it. Although I've found many friends and family members (and even some doctors) who deeply empathize, without a doubt BCFS is one of those things that you just can't understand unless you've been there. I'm a psychotherapist and my dad, and practically the whole family, are physicians. I have been fortunate to have access to extraordinary doctors and excellent psychological support. Nonetheless, this has been a harrowing journey.The chase for a diagnosis (once the bad stuff was ruled out) became somewhat of an obsession. I've had a history of migraines with aura (often without a significant headache), depression, and anxiety. This was always attributed to hormones since the problems seemed to come up during pregnancy and PMS. When I look back I realize how much my attempts to solve "the problem" actually created other ones and made for a lonely roller coaster ride. I started taking Klonopin when the sweating became intense and there were stresses going on in my life, suggesting the problem was anxiety. I liked Klonopin. It relaxed me. Unfortunately, a little too much for a little too long, put me on a depressive path. My energy was so low, I couldn't function. My self-worth dipped and I didn't have the will to live any longer. I spent a year trying multiple varieties of antidepressants until I got so tired of being a patient that I finally quit counseling, psychiatry, and determined my identity as a patient became the problem. Within weeks I was functioning at a normal level, and I was committed to never being back in that place again. It was agony. That was about five years ago. Off and on since then, I noticed a pattern. Pain, low energy, itching without rash, and this peculiar buzzing in my feet and ankles that felt a lot like the vibrations of a cell phone against your body. I thought is was weird, especially when I noticed that it seemed to happen mostly from Sept. to April. Here and there I went a my internist, a rheumatologist, and they both seemed to think along the lines of myofascial pain syndrome or fibromyalgia. The prescribed meds didnn't make a difference. Whatever it was, I was gonna keep a good attitude and keep my mental health in check. Then this past September it got really bad. Burning sensations, pins and needles, a feeling like there was something caught in my throat, and a migraine aura that lasted well over 90 minutes. Oh s***! Health insurance was becoming unaffordable and I had just switched to a plan with a higher deductible. I told my father what had been happening and he said, "get to the neurologist, I'll take care of the bills, no worry." I am lucky or what? So I went. As a diligent patient with an understanding of the way doctors are pressed for time nowadays, I was prepared with a typed list of symptoms. This guy was a family friend and a practicing neurologist for 35 years. The facial parasthesias warranted an MRI. It came back negative. I wasn't really worried. I could deal with MS, I thought. In fact, I was a little disappointed. It didn't stop the symptoms and they were getting worse, interfering with work, fun, etc. I went back for a nerve conduction study and an EEG. I went to a ENT doc (nice guy, who kept trying to tell me it was anxiety), a new rheumatologist (who seemed more interested in my personal life than my symptoms), a chiropractor . . . the list goes on. All the while these bizarre buzzings were occurring more and more frequently and all over. And the pins and needles seemed to be going away, but the pain increasing. Everyone was saying it was psychological in origin, but I knew it was not. Even so, I'm a psychotherapist, and a hypnotist. I help people deal with chronic pain all the time. I took a mindful approach and decided to self hypnotize, reframing the pain as a pathway to relaxation, and the twitching (involuntary muscle contractions) as a a sexual turn on (it's muscle contractions we experience during the ecstasy of an orgasm). It's the "if you can't beat it, make it work for you" approach.Finally one night, I awoke at 4am in such agony that it took me about five minutes to be able to reach over to my partner and tell him I was in pain. The back of my head was cramping up. It didn't believe it was possible to have a charlie horse at the base of your skull. I didn't think I could even move to make it to the emergency room. My partner called my father, told him the problem and he called in a script to the 24 hour pharmacy across the street. With a heating pad wrapped against the back of my head I lay there, wishing for anything to take the pain away. Within ten minutes after ingesting this barbituate, I was back to normal with just a little residual pain, and exhaustion. Aha! It was cramps. I must have had some kind of electrolyte imbalance. More blood tests, etc. All normal. A relief? Yes. A solution? No. Another visit the neurologist came and I told him about this twitching. It didn't bother me so much, but it was exhausting. I tried my best to make fun of it, and considered it a little private party in my body. He spoke to my father while I was in the office and I heard him mention something about what I thought was "vesticulations." He ordered an EMG. When I came home I googled it and found three ALS sites. I logged off immediately and put that info in the back files of my mind. Didn't want to think it, didn't want to know it, and knew it would do me no good. But I did think about how I might do life differently if I knew I only had five years to live (a good exercise for anyone, as far as I'm concerned). Still frustated, my father arranged a special consult, a full work-up, by a university doctor voted the best diagnostician in the state by his peers (it was his former partner). That very morning, I thought I'd google "vesticulation" again, but this time I spelled it right, "fasciculation." And the first thing that came up was the pnhe.info website. I showed it to my partner, who suggested I hold off until the end of the consult to share it with the doc. The doctor, after the exam and full review of my records, said he didn't know what I had. He recommended exercise, additional vitamins, and paying less attention to my body. Easy for him to say, my body wasn't letting me ignore it. In other words, I was hearing the same thing everyone else was saying, it's psychological - get your head straight the feelings will go away. And then I showed him the print out of the symptoms from the peripheral nerve hyperexcitablity website. He said "this is what you have. My father said, "this is what you have." The neurologist said, "this is what you have." The EMG did not show the doublets and triplets seen when patients have neuromyotonia. But he was willing to make the diagnosis and start me on Tegretol. It's been about a month now. It helped. But the symptoms are coming back. The bad days come as a shock and I've learned that my Superwoman days are limited. Boy, oh boy, have I learned to be grateful. Attitude is everything. Adapting to the change and realizing this is just part of my life is a little bit of a challenge. But, without challenges isn't life boring? A friend of ours has spent the year dealing with stomach cancer, chemotherapy and radiation. Another friend, breast cancer. Another, domestic violence. Another lost her 15 year old son in a hit-and-run. Life is good, even when things suck. Someone always has it better and someone always has it worse.Thanks for dealing with this ultra long post. I promise you won't have to hear my long story again. And thanks in advance for being there on bad days. I'll need you all. I hope I can be there for you, too.