Saturday, May 26, 2012


A lot of people with Chiari Malformation find themselves with various diagnoses over the years until they finally find someone who understands Chiari and gives them the right one. (Then they have to worry about finding someone who knows what to do about it.)

I also got a lot of misdiagnoses throughout my life. Here are some of the highlights:

- a heart condition (nobody could ever figure out what said heart condition might be, other than a murmur, but for years I went through a gamut of heart monitors and cardiologists trying to figure it out. On the plus side, it DID get me out of PE.)

- Chronic sinusitis (Now this one might be legit. Often, sinusitis and Chiari go hand-in-hand. I am not convinced, though, that what they thought was sinus pressure was just that-it might have been the CSF buildup.)

- Epilepsy (This was the big one. Although people with Chiari CAN have epilepsy, my docs and I are pretty convinced that what my neurologist said was epilepsy was actually vasovagal syncope, a symptom of Chiari.)

- Depression/anxiety (Yes, my son died. But my had been around long before that. Depression is a common misdiagnosis for Chiari patients. Ironically, those with Chiari who keep getting a runaround do often end up depressed.)

- "normal pregnancy pains" (I never understood why I experienced so much full body, debilitating pain when I was pregnant. I was told that it was "normal" yet nobody else I knew found themselves virtually disabled by pain when they were pregnant. Now we know that pregnancy made the EDS worse.)

- vitamin deficiency (My surgeon was sure that I was a vegetarian when he did my hysterectomy since my tissue kept falling apart in his hands. He said a good multi-vitamin would fix it right up. It's EDS, not a vitamin deficiency.)

- Vitamin B12 deficiency (Yes, a B12 problem will cause some of the symptoms. But I was tested for that. And it was normal.)

- Restless leg syndrome (That might explain the pain in my legs but how was RLS supposed to account for memory loss and back tingling?)

- Sciatica (Yes, that might account for the pain in my hips and the tingling, but what about the cognitive problems?)

None of my diagnoses ever made sense completely. When my PCP finally got my the MRI in January and got the report back, we were excited. FINALLY something that actually put all of these symptoms together in a cohesive way that let us know we weren't (or at least I wasn't) crazy.

It WAS all in my head. 

According to the Mayfield Clinic, Chiari is often misdiagnosed as "fibromyalgia, migraine headaches, sinus disease, multiple sclerosis, and other complex disorders of the nervous system." My doctor and I actually thought it might be multiple sclerosis. That was what we were expecting the report to say. Others have been misdiagnosed with Chronic Fatigue Syndrome, Parkinson's Disease, dementia, carpal tunnel syndrome, irritable bowel syndrome, bursitis, TMJ, and PTSD. 

No comments:

Post a Comment