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Some updates...nothing exciting, really.

Sep 24, 2010 - 0 comments

pineal cyst


venous malformation


lymph node


neck nerve palsy







There isn't much of anything new to report.

I saw my GI doctor for the follow-up appointment to my upper GI endoscopy (EGD) on August 8th. He told me that everything looked good and that I should keep taking my acid reflux medications, but cut back the Nexium to once a day to avoid the side-effect of bone loss later on in life. I've done so, but I still get some acid reflux no matter what I do. It can be veeeery painful if I forget to take my medication! He said it just feels that painful because the cells lining the base of my esophagus are healthy and when they are burned by the acid, it's especially painfully since they're so new and undamaged. Great. He also told me to start taking calcium supplements daily, but I pointed out that a new research study just indicated women who took supplemental calcium were at a greater risk for heart attacks. He wasn't aware of this and said, "I better read up on that if I'm telling my patients to take calcium....." In the future, I may need to have a pH study done (they put a small probe at the base of my esophagus for the day to determine what the actual pH is and if the pressures in my esophagus are too low or too high. If it's too low, surgery might be needed to tighten my esophageal sphincter to prevent the reflux. He also mentioned in his report that my adenoids appeared a bit on the large side. Hmmmmm.....I'll bring this up to my ENT, but it'll probably just give him another reason to be annoyed with me.

I had a swallowing study done at the behest of my ENT and the speech pathologist monitored my swallowing patterns as I ate and drank a meal of barium. It was really gross. I ate a soft pretzel dipped in barium goo, drank barium goo straight, swallowed a barium pill, ate barium yogurt, etc. Apparently, I do have some mild oral dysphagia (especially for my age) when swallowing and need to be careful whenever I eat. When I swallowed the barium pill, it actually had trouble going down and then got lodged at the tip of my stomach. So that's what the feeling of something "caught in your throat" is! I got the sharp feeling that something was trapped in my esophagus, and it was just the stupid little pill sitting at the top of my stomach, refusing to be flushed all the way in. It took water and then two huge sips of the heavy barium liquid/syrup to make the pill plop into my stomach. All in all, I enjoyed watching myself swallow (liquid fluoroscopy)--it was so neat! I'm not sure what my really sarcastic ENT will have to say about this, but probably not much. He told me during our last visit that he doesn't think there will ever be a resolution of my health issues from his end. Real positive thinker that one is.....

I saw my neurologist yesterday and explained to him that I couldn't stay on Propranolol as preventative treatment for migraines until my cardiology issues were resolved because my cardiologists have me on Metoprolol for the PVCs and VT. I'll be seeing the cardiologists during the second and third weeks of October. I wonder if I really do have anemia and if the heart problems are a result of this. Or if they're a result of my thyroid issues (less likely since I'm not hyperthyroid, just hypothyroid). Also, my B-12 levels were on the lower end, so this could be causing the anemia or the heart problems. I've been taking B-12 supplements lately, though, but that doesn't mean they're actually getting absorbed.

Back to the neurologist, though. He still wants to treat me for headaches only. I asked him if he was concerned about any other neurological diseases, like MS or ALS. He said definitely not ALS, and that my MRIs were clean for MS so he didn't think I had this, either. I forgot to mention Parkinson's...oh well. I told him I still have memory problems, random twitches/jerks especially when my muscles are tensed, and I have spatial awareness problems (I keep bumping into doorways and misjudging distances). I also pushed the idea that I could've had a minor stroke that isn't showing up on the MRIs. He disagreed, of course, and ignored most of my symptoms except for the headaches and the tremor. He said he feels the tremor is still essential (benign/of no known origin) and definitely neurological, but that it'd be helped by the Propranolol if I ever go back on that. He also asked me what the ENT was doing about the nerve damage in my neck, because my MRI was clean for brainstem lesions, which are the major neurological issue that would cause a problem such as mine; aside from diseases involving inflammation of the nerves, like Lyme disease, which I tested negative for. Finally, he told me to be sure that the neurosurgeon sends him a copy of his report after I see him next week to evaluate the venous malformations that appeared on my last MRI.

I'm still at a loss for what's going on with me, but what else is new? I just wished I got that darn lymph node FNA since that might've identified a particular disease and accelerated this whole diagnosing process! But of course could never be that easy for me.

I'll update after seeing the neurosurgeon next week. I hope he can help me out aside from just telling me, "Your venous malformations are nothing to worry about...bye!"

We shall see.

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