AngelM
Senior Member
- Messages
- 150
- Location
- Oklahoma City
I worry that since, according to most doctors, CFS is a “Cry Wolf” disease, it is making it more difficult to get to the bottom of what I believe is an unrelated problem. Once a doctor has pronounced that your CFS symptoms are “imagined,” he or she will invariably think you are making up any additional symptoms you might present with. I’ve been feeling ill over the past few weeks, but because the symptoms began as rather a non-specific sore throat and headache, I assumed I was experiencing a worsening of CFS. After a visit to my PCP— who doesn’t believe in CFS—I was told he could find nothing but a slightly enlarged lymph node. So I must be imagining my symptoms. Right? But as days have gone by, the pain has become concentrated in my head, and behind my eyes, and it appears to me (from experience) that this is very likely a severe sinus infection.
I went through someting similar twenty years ago, made multiple trips to a doctor who insisted I was having migraines. Since I’d never experienced migraine or any headaches before, I thought his diagnosis was highly unlikely. Besides my intuition told me there was something else going on. It felt like my sinuses were involved. However, the doctor refused to believe me, showed me in-office lab results that he said proved I did not have a sinus infection, and continued to treat me for migraine. Finally, much to the consternation of my primary doctor, I went to an otolaryngologist, who ran a needle into my sinus cavities and came back with pus—an obvious sign of infection. Actually two infections—staph and pseudomonas, and neither responded to antibiotics. In fact, the kind of antibiotics I had been given by my primary doctor had only made the infection worse by killing some of the bacteria and allowing the staph and pseudomonas to grow more antibiotic resistant. Because the infection was in the sphenoid sinus, located between the eye and brain, there was a clear danger that I could develop meningitis. The only option was an emergency sphenoidectomy. It was a miserable experience but, because of it, I clearly recognize the symptoms of a simmering sinus infection.
I just received an email message from my doctor’s nurse stating that after reading the lab results from a week ago, he could find no evidence that I was ill. This feels like deja vu. With one big difference. In 1998, I was able to see an otolaryngologist by simply calling and making an appointment. Today, it is impossible (at least in my state, which BTW ranks 49th in healthcare) to see a specialist without first getting a referral from a PCP, then going through a central referral service. It usually takes weeks or months—if it happens at all.
The idea of going through a repeat of twenty years ago, is unbearable. So what can I do? I am feeling worse every day. But I can’t prove I have a sinus infection. The otolaryngologist I established with twenty years ago is retired. So do I call and beg to get in to see another without a referral? Urgent Care. Emergency Room? I am honestly at a loss.
I went through someting similar twenty years ago, made multiple trips to a doctor who insisted I was having migraines. Since I’d never experienced migraine or any headaches before, I thought his diagnosis was highly unlikely. Besides my intuition told me there was something else going on. It felt like my sinuses were involved. However, the doctor refused to believe me, showed me in-office lab results that he said proved I did not have a sinus infection, and continued to treat me for migraine. Finally, much to the consternation of my primary doctor, I went to an otolaryngologist, who ran a needle into my sinus cavities and came back with pus—an obvious sign of infection. Actually two infections—staph and pseudomonas, and neither responded to antibiotics. In fact, the kind of antibiotics I had been given by my primary doctor had only made the infection worse by killing some of the bacteria and allowing the staph and pseudomonas to grow more antibiotic resistant. Because the infection was in the sphenoid sinus, located between the eye and brain, there was a clear danger that I could develop meningitis. The only option was an emergency sphenoidectomy. It was a miserable experience but, because of it, I clearly recognize the symptoms of a simmering sinus infection.
I just received an email message from my doctor’s nurse stating that after reading the lab results from a week ago, he could find no evidence that I was ill. This feels like deja vu. With one big difference. In 1998, I was able to see an otolaryngologist by simply calling and making an appointment. Today, it is impossible (at least in my state, which BTW ranks 49th in healthcare) to see a specialist without first getting a referral from a PCP, then going through a central referral service. It usually takes weeks or months—if it happens at all.
The idea of going through a repeat of twenty years ago, is unbearable. So what can I do? I am feeling worse every day. But I can’t prove I have a sinus infection. The otolaryngologist I established with twenty years ago is retired. So do I call and beg to get in to see another without a referral? Urgent Care. Emergency Room? I am honestly at a loss.
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