Let's see what you can come up with!
DH's symptoms are officially classifed as Left Side Hemiparesis, which means muscle weakness for his entire left side: facial droop, tongue unable to move to left side (which slurs his speech), arm, hands, fingers, leg, feet, toes - all on left side. On Sunday, just to switch it up a little, the right side experienced the same thing in addition to the left side. At this point the right side is back to about 90% normal but the left side is the worst it has been in a long time.
The symptoms had been coming on for about a week and then going away, usually for around a month, but the time in between kept shortening until in March the symptoms came and have not left. Every time the symptoms left before DH was left with full function, as if nothing had happened. Along with the regular symptoms, he now has severe headaches that never fully go away and double vision (side to side) now for both close up and far away. The doctors do not want him left alone (for fear of falling), driving (because of the double vision), or back at work. He has used up all his sick days, so now we are living on my preschool teacher's salary.
Since every single medical test (MRIs, MRAs, CAT scans, Lumbar Puncture, Blood work, EMG, EKG, EEG, TEE, X-Rays) has come back clean, the doctors keep going back to Conversion Disorder. The problem is that he is NOT under stress (actually removed himself from ALL extra-curricular things he used to do at school) and has not experienced any traumatic event. He does have Obsessive-Compulsive Disorder and takes Prozac for it, but that has been under control for almost ten years now.
In January he started seeing a psychiatrist that specializes in Conversion Disorder and after working with him for all these many weeks she clearly states that this is NOT psychological. But the neurologists keep going back to that diagnosis because they can't find anything else.
If it turns out to be Conversion Disorder, we do understand that it doesn't mean he's faking this. The symptoms are real and he has no control over it. However, even his regular psychiatrist feels that there is something medical at the bottom of this. We just haven't found it yet.
Please feel free to do your own research, forward this to anyone you think might have some good ideas, post questions in the comments section here. The symptoms have been coming and going since July 10th now. The jokes about Dr. House, Mystery Diagnosis, and all the other medical shows out there really aren't funny anymore. We just want his quality of life back.
6 comments:
The National Institute of Health in Bethesda, MD actually has an Undiagnosed Disease Program. I read about it here:
http://www.nytimes.com/2009/02/22/magazine/22Diseases-t.html
have they ruled out Balo's concentric sclerosis? and pontine warning syndrome? I've got some literature if you are interested.
I found this post on www.medhealth.org's website. it seems like chas isn't the only one with these symptoms. we'll keep looking for answers and praying - something will turn up soon. Have faith.
"I am a 19 week pregnant 23 yr old. Three weeks ago I had a sudden headache come on so I took some Tylenol which did not help. Later that evening i noticed my right side felt numb and tingly, so I figured I'd sleep it off. I woke up in the morning to find the numbness more intense and the headache unbearable. I called the doctor and they had me come right to the hospital , and kept me for 7 days. I have had an MRI (without contrast due to prego), CAT scan, EGG, and Lumbar puncture . They all came back "good" .The doctors were split between saying i had a stroke or a-typical migraine. The headache persisted for 7 days and disappeared the following sunday morning. I am still left with numbness, loss of feeling and weakness (my right side is 50% weaker than on my left). My blood work showed i am heterozygous for mthfr 1298 and 677. but they have not yet tested for homocysteine. They said that feeling should start coming back but it hasn't at all. Migraine has been ruled out because the Hemiparesis has persisted. It seems between the obgyn, high risk obgyn, two neurologist, hematologist, cardiologist, and internal medicine no one can figure out what is wrong with me I am so angry and frustrated. I have to walk with a cane to keep from following over. Does anyone out there have any idea at all? "
FP sent here by a mutual friend.
The symptoms sound stroke-like, but because they resolve completely that technically makes them transient ischemic attacks (TIAs). It's all the same thing, though; areas of the brain not getting enough blood.
Stroke/TIA/brain not getting enough blood is usually the result of narrowed or blocked blood vessels; the whole "cerebrovascular disease" thing, with risk factors like high blood pressure, high cholesterol and the like. But since that's an easy/obvious diagnosis, obviously that isn't it.
But what occurred to me was the possibility of vasospasm, which is just what it sounds like: blood vessels that go into spasm. While they're squeezed shut, they're functionally blocked, but when the spasm releases, the blood flow returns and the vessel looks completely normal. Google "Prinzmetal's angina" and imagine the same thing happening in the brain instead of the heart.
Has he had blood vessel imaging while the symptoms are present? That might show the spasm.
Looking again, I see the symptom duration is probably too long for this to be the mechanism. Apologies if it's already been thought of and ruled out.
What a horrible situation. Best of luck.
Not that I'm an expert, but the only thing I could find that looked similar was Myasthenia Gravis (which isn't all that similar)and Lambert Eaton Sundrome (which usually points to underlying autoimmune issues, like Lymes or cancer or something).
Sorry I'm not much help!
I am so heartsick for you both. I'd try the program that Anjali suggested -- what is there to lose at this point?
And, does Chas not have any disability insurance through the school?!
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