- CASE FILE
4 rare neurological issues, 3 in the head. Fatal rare lung disorder, never smoked, heart failure from the lung disorder. Fibromyalgia
ABOUT THIS CASE FILE
I'm seeking help from Chasing the Cure cause half of my conditions are rare. I use to joke that if it was rare, I was going to get it. It almost sounds like I'm a hypochondriac but I have the symptoms & testing to prove I'm not. I was healthy as an ox up until 1993 (Iwas 31) when I was diagnosed with Fibromyalgia. I use to run 3 miles day and do every sport imaginable. I took care of my heart & lungs by not smoking, drinking or doing any illegal drugs. Now that seems to be for nothing as both are killing me. Not counting the rare nerve conditions in my head. Basically I have 3 pain conditions that are being treated by low dose pain meds, I refused heavy duty pain meds early on cause I was young (around 40) and thought I had a lot of time and didn't want my body to become resistant to them to where I wouldn't be able to go to a different, heavier drug when I got older. That doesn't seem to really matter now. In 1995 I started having problems with dropping things and losing my pulse in my right arm. I was diagnosed with Thoracic Outlet Syndrome and eventually had a surgery to remove the 1st rib on the right side. The theory was to make more space for the veins and nerves going down into the arm. It has now been known as a hack surgery and failed. My right arm does not fully extend up when I raise my arms. A year after the surgery I got diagnosed with a rare nerve condition called Trigeminal Neuralgia. We finally got it under control with Oxycarbezpine but it's side effects include messing with the brain, primarily memory. The med is now used for Bipolar issues so I'm sure it is affecting my brain in other ways. After being diagnosed with Trigeminal (4yrs later), I started also having problems with the back of my head which was diagnosed as Occipital Neuralgia. From then on I had nerve problems all over my head. I got shingles twice on the top of my head and have now been diagnosed with Postherpetic Neuralgia so I can't touch the top of my head cause it hurts so much. They gave me a cream to put on it but it isn't easy to get the pain down once it starts. And now the big one that's killing me and I need the biggest help with. 8 yrs ago I started noticing I couldn't breathe easily when I did work that I had been doing all the time in my adult life. Over the next 4yrs it got worse and worse. The dr's kept saying I was "barely" passing the breathing tests so they refused to send me to a Pulmonologist. In 2015 I got very sick with what started out as a cold. I was in & out of the hospital for 3 months before they finally diagnosed me with Pulmonary Hypertension. They started me on Sildenifal (Viagra) and oxygen. But the disease has now progressed and they don't seem to know how it came about. I now technically have Pulmonary Arterial Hypertension and both sides of my heart are seriously being affected. I need help cause I live in Nevada which ranks almost at the bottom for health care. I've been disabled since 1993 (from Fibromyalgia), so being on Social Security Disability I don't have money to go to another state and get a second opinion on the care I'm getting. And honestly I don't think I'm getting the best care. The Cardiologist doesn't do anything and the poor Pulmonologist is having to do both Dr's jobs. I'm stuck in a situation where I can't exercise cause no Dr seems to want to help me in that respect, but they all want me to lose weight. I'm hardly eating anything (Calorie wise) but we can't seem to get the fluid down to get the weight off. The Pulmonologist did an extreme diuretic thing, I ended up in the hospital and almost died. This gives you an example of the care I'm getting. They're reaching out to do extreme measures which aren't always the safest thing for me. This has severely impacted my life in many ways. I'm now home bound, can't seem to get around much cause it's just so difficult. I'm on 16 different meds all that seem to just treat symptoms. Especially on the nerve conditions, I'm wondering if they missed something or misdiagnosed something in the past that has caused all these problems to come out. I've been told by several people that the way I've deteriorated almost acts like MS or Lupus.