My least favorite medical term I've heard over the last few years is "medically significant." This term, and what is functional played a part in the journey I took to get to my diagnoses. My experience of how some doctors handle patients with difficult to diagnose problems also played a part. 

Medically significant is a term doctors like to use, at least some of the ones I've seen. As I understand it, it means that you have a problem that warrants medical attention. But sometimes tests or exams don't reveal a need for some sort of fix that the doctor can provide. Sometimes the problem is what I, and my therapists, would call functional. In my experience, doctors need to be better about recognizing when a patient has a problem that needs help that they cannot provide. Or that a patient needs more testing to figure out what's wrong. Technically, I don't have medically significant problems with my eyes. There's nothing wrong. This fact still astounds me - it's just absurd! But it's true, according to various measurements that a doctor can achieve by performing tests on my eyes. 

Correctly diagnosing a problem can be very difficult, and this is definitely the case with vestibular disorders. So what was my route to my combo diagnosis? It started with a neurologist. He did correctly diagnose BPPV. The problem was that when my MRI a month later was normal, he didn't say "OK, clearly you're not OK. So now what do we do?" I wasn't in a position at that point, and hadn't learned nearly enough, to advocate for myself. So I went from doctor to doctor, being told over and over "BPPV." Finally, I went to an ear specialist - I only saw him once - who said that I might have what he called vertiginous migraines. I wasn't sure what he meant, but I do remember having this light bulb "a hah!" feeling. He said he didn't feel qualified to make a diagnosis, so he referred me (yes, finally a referral!) to a dizziness specialist. 

I ended up at the Chicago Dizziness Clinic in July, ten months after first getting sick. I had had some tests during the winter, but not a complete battery, so I had to do some more. The neurologist explained that beyond symptoms, there was no test for MAV (what the ear doctor had called vertiginous migraines), which is what he thought was the problem in addition to BPPV. He said he had to rule out a bunch of other stuff in order to confirm the diagnosis. So the good news was that I did end up with the diagnosis of MAV, but the bad news was a) not being told anything about a migraine diet, and c) not being told there might still be something else going on, in my case with my vision. I had the distinct feeling my eyes were over reacting during some of the tests. I figured out about the migraine diet on my own with help from various sources, including VEDA. I also figured out by the winter time - now a year and a half AFTER initially getting sick, and having started therapy with Joyce the previous May - that I definitely had something going on with vision. Something that was beyond diet, or help from Joyce. It's also worth noting that I did NOT get to Joyce because of a doctor, but rather on the recommendation of a friend.

I think one reason doctors don't always make referrals is because they, in my experience, don't want to admit when they don't know something. It's true that I want doctors I see to have answers I don't. I don't expect non-medical people I interact with to understand my situation, but I do have an expectation that doctors will be informed about the basics. It's strange to be in the position of needing to inform THEM. I've found therapists tend to be better about this. Certainly Joyce fits in this category. When I first saw her I said I wondered if there was something going on with my eyes, but then we moved into concentrating on what she could do for me. By the winter - about eight or nine months after I'd started with her - I brought up my vision again. By then she thought I had progressed enough to check this out, and I ended up in Dr. Margolis' office. 

I went through a variety of tests, and then had a consultation with Dr. Margolis. I finally had found someone who understood what I was experiencing. I no longer felt like I was going nuts. Going through the tests was difficult, but getting a diagnosis, and being told he could help me was worth it. I still feel like my vision problems are a bit strange, but when I'm there, even though the therapy is difficult, I also feel understood. I now know that I must have had Convergence Insufficiency (CI) as a child. There is a genetic component and both daughters have it - Leena needed therapy. I don't know back in the 60's if there was any kind of vision therapy. I've never done the research to find out. I know that vision is very complex, and my problems are really more than the CI. I'm very fortunate that I ended up with Joyce and that she sent me to Dr. Margolis, who has skilled therapists who are also wonderful people. My vision problem is not, technically, a vestibular disorder since that refers to problems in the inner ear. But vision is an integral part of balance. I've been told that I rely too heavily on my vision because of my balance problems, and this in turn is a problem since I have a vision disorder.

I don't know if my situation would have been different if I hadn't had such a circuitous route to the final piece of my diagnosis, or if I'd found out about my migraine condition earlier in the process. I'll never know. I do know that doctors need to be willing to help patients regarding conditions that may not be "medically significant" but ARE what I call functionally significant. Being functional in the good sense of the word matters a lot. Bodies are amazing, complicated systems and doctors can't know everything so they need to be open to sending patients elsewhere. Even in the best of circumstances, pinning down a diagnosis can be difficult, and once diagnosed the problem may be difficult to deal with. Knowing what's wrong can give some peace of mind. I know when I do something and I feel bad, knowing WHY I don't feel good takes away some of the anxiety. I can figure out ways to cope, and utilize my support system. I couldn't do that when I didn't know what was wrong.