Dr. Google

When medical things go wonky, you should be banned from the Internet. You should not be allowed to access Dr. Google until such time as you get to talk to and sit down with your actual physician. I'm sure some will be outraged by this statement, but this past week has driven home the notion that the ready access to information is both a blessing and a curse for those with chronic illness like myself.

Be mindful the information you consume, human. 

Last Monday I had an MRI at the behest of my rheumatologist. She'd been suggesting it for some time and I just never took her up on it. Mostly because the last time I had an MRI for this issue nothing showed up and the doctors made it seem like I was an attention-seeking hypochondriac. It didn't make sense to have another MRI for the same symptoms when the last one showed a lovely brain free from abnormality. Of course, that was about 15 years ago, so things may have changed. Since my balance and migraine symptoms were getting worse, I figured I should at least make sure things weren't dangerous in my noggin.

Wise goat approves of my choice. Those horns don't fit in an MRI, do they?

Apparently they've changed the contrast dye for brain MRIs. First, I got nauseated and wretched several times. I was exceedingly grateful that I had not eaten breakfast first. Then, after the MRI, my left eye felt weird. When I got back to the dressing room, I look in the mirror and to my horror, my left eye looked like someone shoved a walnut under the lid! It was getting difficult to keep open. I sighed and figured it was an allergic reaction. TV shows are right: you really can swell up to comic status due to an allergic reaction. Numb and tingly, too. Anyway, they gave me a healthy dose of Benadryl in an IV and about 3 hours after I checked in, I was finally released. Ugh! But that's not the really fun part of the story.

That's right, Friends. There's more.

I saw my neurosurgeon later that day. Through my Benadryl induced haze, he told me that my neck looks great and I have fully healed. He then told me he looked at my MRI and didn't seen anything out of the ordinary. I commented that it didn't surprise me since vestibular issues aren't known for producing unusual MRIs. He concurred, but then things got complicated.

Uh-oh. Goat's getting grumpy.

Two days later, I was thinking that there's nothing to be done about my balance issues other than what I was doing and that I just would have to manage somehow when I got a call from my rheumatologist. Nothing of major importance except that she saw evidence of small vessel disease. Now, why a neurosurgeon didn't mention that, I don't know, but she saw it and recommended that I increase the blood pressure medication I take to control the vessel spasms and migraines as well as add a baby aspirin daily. This would apparently help my balance issues and still be ok with the Von Willebrand's Disease (easy bleeding disorder). I thank the nice nurse and give my GP a call requesting an increase in my Amlodipine. An hour or so later, I get a call from that doctor's nurse saying that no, we're not increasing the BP medication because my pressure is already low and he doesn't want to bottom out. I am to request that the rheumy send the MRI report and then see my GP in a few weeks...on the first day of my winter break. *sigh

 

Oh sure. I can wait. The walking in a funhouse feeling and the visual migraine auras aren't that bad.

Well, I am glad that the GP called because I was just going to take two of the Amlodipine as the rheumatologist suggested knowing full well that the first few days would be a little unsettled. I was home on Thanksgiving break, so perfect time to adjust to a med change. I could also Google "small vessel disease" freely. Bad idea.

I know, Tom. It is astonishing the amount of information out there.

I got some fairly scary information about small vessel disease. It's common in lupus patients and people with migraines. That point is fairly solid. However, the results of that condition get a little muddled. One of the first sources listed 75% incidence of death or disability as a result of diagnosis. Another site said that within 7 years of diagnosis, death was likely due to stroke or heart attack.

What the actual fuck?

Another one talked about micro bleeds, mini strokes, and the need to control things like cholesterol, BP, and weight. All of which are excellent for me. Apparently, the risk of stroke and heart attack are much higher with small vessel disease. I did discuss all of those risk factors with my rheumy's nurse, so she made note of my awesome cholesterol and my 90/76 BP. However, according to Dr. Google, while the treatment prescribed is sound, this condition is also known to the second highest risk factor for dementia after Lewy bodies.

 

Processing...processing...nope. Freaking out now.

Great, so my brain is not getting enough blood, which leads to the balance issues, the migraine increase, and now risk of micro bleeds and mini strokes and regular strokes which then leads to developing dementia usually in people 60+ years old, but hey! I've got lupus and migraines so why not get a 20 year jump on losing my mind? Sounds fun.

Totally fun. 

I did read one article that said small vessel disease in migraine patients isn't anything to worry about. That the white brain matter isn't worrisome for the day to day living. I read another article chastising the doctors and professionals who publish about this condition for throwing the term "vasculitis" around too freely. They simply don't take enough care in their word choice, which then produces search results like the ones I got. Even though I was careful to always search for just small vessel disease, the inter webs would inevitably provide articles that used vasculitis instead of small vessel disease. So I Googled again and paid attention just to articles that said small vessel disease, not vasculitis or other "associated" wording. Being discriminating in your search wording and subsequent results is frustrating. Even articles on blood pressure couldn't agree whether mine was average or too low for BP therapy. This is what my GP is concerned about. I think my lowest ever was 88/69 give or take a point. Even at the height of the MRI allergy, my BP never got above 100/80.

Zen moose thinks I should just keep swimming.

So what am I to do or believe at this point? Get the MRI report to my GP for his consideration. Done.  Await his advice? Ok. I trust him, more than the neurosurgeon who didn't see small vessel disease. Given my balance issues and the numbness I always mentioned when he did the safety pin sticks, maybe he should have paid a wee bit more attention. Whatever. Our relationship is ended and I never have to deal with his slightly misogynistic sense of humor again. Hope that my GP, hematologist (Von Willebrand's is contraindicated for NSAIDs like ibuprofen and aspirin), and rheumatologist  figure this out? Guess so. Get regular exercise (I do) and quit drinking? Ok. I was already moderating my alcohol consumption, but it's a big risk for me with the NSAIDs and the medications I take. It's also not helpful to my inflammation or migraine management. Fine. Try not to freak out at the idea of losing my mind or suffering strokes? I'll work on that. Stay away from Dr. Google? Definitely.

Um, I don't know what's going on with this pig. I searched for "hope." Does this give you hope?