My name is Thad and I am a new member from Kansas City, MO. I have not been diagnosed with anything yet, other than possible strokes, but who even knows about that anymore. My story starts a little over a year ago. I had been having problems with extreme fatigue for quite a while and I was seeking care at our local VA Hospital. I was sent for two overnight sleep studies that were both seen as normal. Next was a multiple sleep latency test, which just showed I was extremely fatigued and could fall asleep fairly quick, but it rulled out things like narcolepsy. The doctor I was seeing for fatigue recommended that I have an MRI done to check for a Chiari malformation. A day or so before the MRI I had a horrible debilitating headache, but a trip to the ER just resulted in some medication and a "migraine" diagnoses. I went on with the MRI as scheduled and I was cleared of a Chiari but there was an "incidental finding" of a lacunar infarct in my right cerebellar hemisphere. A couple days after that I was back in the ER for seeing spots and a numb face. 6 days of admission to the hospital resulted in no answers. First it was all thought to be from MS, then Lime disease, then complex migraines and a handfull of other possible diagnoses. I was told at one point that they were fairly certain that I had a genetic disorder called CADASIL and that I really should go home and look it up. What a suprise when I looked that up. Genetic testing rulled out CADASIL, so the search goes on. I have had countless MRI's and CT scans, and not a single one mentioned anything about Chiari. It wasn't till a trip to the Mayo clinic that Chiari was mentioned again. The Mayo didn't do there own MRI, but they conducted thier own interpretation of my last MRI completed by the VA. It read " Mild generalized cerebral and cerebellar atrophy. Few small chronic appearing lacunar infarcts within the inferior right cerebellar hemisphere. No acute ischemia noted on diffusion weighted imaging. Minimal leukoaraiosis. Low lying cerebellar tonsils which do not meet the criteria for a Chiari malformation."
With all of that being said, I have been poked and proded so many times I don't know where to turn. Since Chiari was what they were first looking for over a year ago and it was then mentioned again I thought I would look into it a little more. I can't believe what I have read so far. So many of the symptoms that are related to Chiari are an almost everyday occurence for me. I didn't think there was anything that would relate all of the symptoms to one disorder. My only confusion relates to a simple question, if it really could be Chiari, why hasn't anyone looked into it further for me? I haven't had any special imaging other than normal brain MRIs and one cervical spine MRI. I haven't done anything to look at flow of CSF of anything like that. Who knows. Could it really be a Chiari that is causing me all the trouble? Any advise is greatly appreciated. My symptoms are:
Hypertension, Tachacardia, Chronic headaches that start in the back of my head just above my neck and radiates to the front when it gets bad, facial numbness (not really once side or another, just about at my top lip through to my bottom lip, kinda like where a goa-tee would be), weakness on my left side, but weak legs on both side, it also seems like my legs will just go out from under me. I can usually catch myself but not all the time, balance problems and falls, heavy legs at times, tinitus, blurry vision, floaters in my eyes, mild cognitive deficit in congnitive processing speed, learning and memory.
Sorry for the few things in the list that I am sure are spelled incorrectly.
I am sure I forgot a thing or two, but that is enough to get the point across. Did I mention the headaches? THOSE STINK! I had one severe enough to send me to the ER recently and two shots or morphine didn't help.
Anyways, any advice or guidance that anyone can send my way is greatly appreciated. Maybe someone in the area can recommend a good doc to try?
Thanks for reading!