Hi everybody,
I was hoping maybe some of you could read my post and try to give me advise. I have been struggling for 15 months to be diagnosed and don't even have a follow-up with a doctor as of now! It started l11/5/05 when I felt this electrical type shooting in my head, my heart rate quickly went up and stayed in the 150's for quite awhile. This happened many more times for several months. I had cardiology workup and went for a cardiac ablation. My heart rate went to 300 bpm when given the adrenalin and there was nothing to ablate!. To make a very long, very horrific story short, I now have fasciculations that look as if a bag of microwave popcorn is popping under my skin. They started in my legs and have moved to ribs and arms, now hands and occasionally face. I have incredible leg weakness, but mostly right side with right arm now added to it. I am extremely exhausted and have terrible muscle cramps. I have trouble sleeping at night with vibrations, twitching and weakness. I have had an extensive workup to include an abnormal 24 hour urine with high norepinephrine for which I was diagnosed with pheochromocytoma (didn't have), then they thought MS (MRI normal), then fibromyalgia (crock). Now, I have no follow-up, can barely leave the house and am growing weaker by the day. I am 43 and a single mother of 3 school age children. I cry almost everyday because my good intuition knows I have a debilitating disease. I live in a crappy little Upstate NY town and have only seen a NP in neurology, never the neurologist. I did have an EMG at the very beginning of this, which was normal, though the NP noted decreased muscle tone and clonus in my right leg on exam. I hate to burden the readers out there and I know you can't diagnose me, but I am so scared and alone. My friends have all disappeared and I have very little family. I have tried to make an appointment at Upstate Medical in Syracuse, about 2 hours away, but so far insurance co. is giving me a hard time. Anyway, thanks for listening.
I was hoping maybe some of you could read my post and try to give me advise. I have been struggling for 15 months to be diagnosed and don't even have a follow-up with a doctor as of now! It started l11/5/05 when I felt this electrical type shooting in my head, my heart rate quickly went up and stayed in the 150's for quite awhile. This happened many more times for several months. I had cardiology workup and went for a cardiac ablation. My heart rate went to 300 bpm when given the adrenalin and there was nothing to ablate!. To make a very long, very horrific story short, I now have fasciculations that look as if a bag of microwave popcorn is popping under my skin. They started in my legs and have moved to ribs and arms, now hands and occasionally face. I have incredible leg weakness, but mostly right side with right arm now added to it. I am extremely exhausted and have terrible muscle cramps. I have trouble sleeping at night with vibrations, twitching and weakness. I have had an extensive workup to include an abnormal 24 hour urine with high norepinephrine for which I was diagnosed with pheochromocytoma (didn't have), then they thought MS (MRI normal), then fibromyalgia (crock). Now, I have no follow-up, can barely leave the house and am growing weaker by the day. I am 43 and a single mother of 3 school age children. I cry almost everyday because my good intuition knows I have a debilitating disease. I live in a crappy little Upstate NY town and have only seen a NP in neurology, never the neurologist. I did have an EMG at the very beginning of this, which was normal, though the NP noted decreased muscle tone and clonus in my right leg on exam. I hate to burden the readers out there and I know you can't diagnose me, but I am so scared and alone. My friends have all disappeared and I have very little family. I have tried to make an appointment at Upstate Medical in Syracuse, about 2 hours away, but so far insurance co. is giving me a hard time. Anyway, thanks for listening.