Good-for-nothing diagnoses

I have a couple of people in my life, very close to me, who struggle with symptoms of some type of syndrome, disease, illness, or whatever that the doctors simply cannot identify precisely...so they do what doctor's call diagnosing them with an "exclusion diagnosis". This is when no other diagnosis they can think of readily fits the patient, so they just give a very general diagnosis...

One example that is common is irritable bowel syndrome. No way you haven't heard of it. Some call it spastic colon. It's all the same. It means you either have bouts of horrible constipation, diarrhea, or you vary between the two and the doctors cannot find a viral, bacterial or other reason through colonoscopy, x-ray, etc to link to Crohn disease, allergies, or the common exclusion/inclusion of campylobacter, salmonellae, helicobacter, and shigella or E. coli. So, they check you for all of this, most come up negative and they say "You have a spastic colon". There's nothing they can really do except give you meds to try to stop your colon when it's doing its "thing" and you have to play around to find which med works for you and at what dose. If you're lucky, it will go away on its own...if not, you'll be struck with it for years.

I have a little girl who just turned 5 and they have no idea why she struggles with bouts of constipation. She has to take Miralax at an adult dose 2x a day and she still gets "backed up" all the way to the pyloric sphincter (very bottom of the stomach). So, when this happens, she has to go through a horrible regimen of the Miralax PLUS Milk of Magnesia. When this has failed her, she has in the past been hospitalized and put on magnesium citrate (called Go Lightly) which is HORRIBLE. They put it in through a nasogastric tube (through the nose into the stomach). At this point, she has had several x-rays, a gastrogram, and blood work...I think they should do a colonoscopy and check for something else. This CAN'T be normal in a 5-yr-old...

Another lovely band-aid label I think is given out too often is "fibromyalgia". I've seen studies on this condition, watched medical shows on it, and have had 2 friends who were diagnosed with it as well. One of my closest friends battles with the symptoms of this label, and it is something I wouldn't wish on one of my worse enemies. She has been becoming more and more debilitated over the last 2 years; somewhat due to the pain in her muscles, but I also think it has a lot to do with all of the near-20 medications they have her on (no joke! but that's a subject for another discussion!). Simply stated, "algia" means pain, "myo" means muscle, and "fibro" means fibrous (tissues). There are so many other conditions and rare diseases this could be related to that other medications (which she is not on) could treat. Instead, her original physician (who did not put her through the proper test (pain in at least 11 of 18 designated "tender" points, and a >3-month history of widespread chronic pain in all 4 body quadrants) heard her story and just diagnosed her as fibromyalgia because he couldn't think of anything else. Now, all these years later and doctors later, they are still treating her as such. She could have rheumatoid arthritis, gout, osteoarthritis (her symptoms fit many of these), yet none of the physicians LISTEN to her. They look at her electronic chart, fill out another pain pill script, collect her co-pay and send her on her way.

I went with her one time because she was becoming more and more fatigued and was having chest pain. The physician she was seeing was chalking it up to her "fibromyalgia" and I was not having it, so I went with her and pushed for him to send her to a cardiologist. She got the referral and I went with her. The cardiologist did an EKG and found an abnormality. She had a cardiac catheterization and they found 2 vessels with occlusion and the cardiologist said at least 1 of the vessels was so blocked (90%) that she would have had a heart attack had she held out any longer and that this was the reason she was so fatigued. The heart could not pump the oxygenated blood through her body. Fibromyalgia my rear.

She also has a finding in her lung that the same physician says is normal for people who come from up north. Does he not see it in her chart that she was a long-time smoker? Does he not hear her when she says she has a chronic cough? He chalks that up to COPD. I think she should see a pulmonologist and have a CT scan, but I cannot manage her health care...I can only support her the best way I can.

I'm not a doctor, and I hope I'm wrong on some of this stuff, but all I know is that I'm seeing a lot of "lazy diagnoses" while my husband and my friends are all paying out some hefty medical/health care amounts. Frustrating doesn't even begin to cover how I feel about this.