But your cholesterol is great

I purposely haven't written about the various doctor appointments and such since going back to the diagnostic drawing board. I'm ready to again although it's so jumbled. Keeping this inside is turning into anger. Not the useful kind rather the type that seeps out when you don't intend for it to. The kind that I don't want to own or at least propagate.

I'm angry that I catch things and make the self-referrals. So far, I've been the referrer (is that a word?) on all the big discoveries on this journey. Where are the GPs who actually help patients with coordinating multiple complex conditions? Grr. As much as I believe in patient advocacy, I really think this journey would have been different and more efficient if I'd had someone at the helm, like a primary care doctor.

I see some of the mistakes I made in retrospect. Point being though -- I did the best I could without much guidance. And, in the face of docs being out-right dismissive or not really knowing what to do with a complex patient. A woman with fatigue prominent in her symptom complex and who is difficult to diagnose often gets sent to the dump station in regards to diagnoses. I never would have believed my journey if I hadn't lived it. I openly admit to being jealous of those who receive quick diagnoses.

The most recent new internal medicine GP was referred by other docs in the large clinic I go to. She's young and still proving herself. However, she's already missed blood work issues that one should be looking for post-thyroidectomy and is confounded at my non-MS CNS demyelinating wonk syndrome and issues piling up. She keeps telling me to be patient with her while she wraps her head around my case. Three months and counting. Recently she made an unbelievably lame referral that I won't even go into. Let's just say I was outraged. So, was everyone familiar with my case. I didn't pursue it.

So, I self-referred back to the Rheumatologist I saw last year. He's refreshing in that he knows I'm sick and zoomed in right away on several things including my heart. The ECG was somewhat abnormal. He caught something on my blood work from the GPs office - grr. He also pointed out that several other autoimmune conditions aside from MS cause lesions on the brain, especially non-specific ones like mine. Yes, I know. I've been trying to point that out to doctors for a bit. I think we'll be looking at the connective tissue diseases. I think Lupus was the suspect last year. It didn't get pursued due to med reactions and then the brain tumor distraction. But I'm jumping ahead. I'm scheduled to return for a 2 hour appointment.

I also broke one of my rules. I don't usually mention labels since docs will think you're self-diagnosing and get bunched up about that. However, I asked for a specific condition to be ruled out. It's actually a neuromuscular condition. He didn't flinch and agreed. He'll run the first-line test and I'll see a general Neuro in...March. Sigh.

Meanwhile, my shortness of breath and wonk get worse with exertion. And, exertion is now classified as being upright and talking for any length of time. I have strangers approaching me in public expressing concern. It's kind of them. It's all strange. A friend did my grocery shopping for me this week as that's my most difficult task. The new normal keeps shifting.

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On an amusing note...I thought the Rheumatologist knew about my brain surgery and had it in his notes. So, while I was recounting events I casually referred to my craniotomy. He instantly sported a smug amused smile. Like, oh these patients, and how they mix up medical terms. He responded, "A craniotomy, eh? How'd they do that?" I was a bit confused and responded with, "Well, they drilled my head open. And..."

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