Discussions By Condition: I cannot get a diagnosis.

Horner's syndrome-finding it's cause!

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Anonymous
  • March 8, 2007
  • 04:59 PM

Hi, My husband was diagnosed with Horner's syndrome in Dec-2006. He's 52 years old. He has had work up with a neurologist and he can not find the cause.He's had CT scan of head, MRI of head & neck, MRI venogram of head & Lab work done. The only thing that has shown up so far is thyroid is borderline and uric acid up (he's been on gout meds for a few years). He started taking levothroxine 50mcg a week ago and doubled the dosage on gout med. My husband has episodes of visual problems, pain in back of head & eye, sometimes when he's been laying down, the opposite side of his arms & legs feel asleep for a couple hours. He has other episodes hard to explain weird sensations in different areas of his body, one being in his neck area-a rush feeling up his neck area & feeling short of breath. We've noticed he is swollen (puffy) around his neck on both side down toward his shoulder above the collar bone area on both sides. Health problems before the Horner's sydrome diagnosis include restless leg syndrome and he takes meds (requip) that helps some. Has high blood pressure takes 2 different BP meds. Also has high cholesterol and takes Lipitor. Would you have any idea of what else to do to find the cause of the horner syndrome? He does not feel good. Thank you. Pete's Wife

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8 Replies:

  • I think you probably need to track down an expert in this field. A neurologist might not necessarily be the best person to see, unless he has particular knowledge of Horner's Syndrome. There are a number of causes of Horner's Syndrome which in itself is quite rare. It might be best to look at it in the overall picture of the other symptoms, many of which I think require investigation in themselves. It is important that you describe these to the specialist as clearly as you have done here. And don't forget to let us know what you find!
    Anonymous 42789 Replies Flag this Response
  • Hi, Thanks for your response. Do you have any ideas on what kind of a specialist would be an expert on Horners Syndrome? The more I search on the internet for information on Horners,the more confused I get. He has the "no sweating on on the left side of face (forehead)" so I think that should narrow it down a little but I still don't understand which nerve is being affected. And if it is a nerve being affected like the horner info says, I'm wondering why a neurologist couldn't find an answer. :rolleyes: Thanks again. Pete's Wife
    Wife of Pete 3 Replies Flag this Response
  • Horner's Syndrome is a symptom rather than a diagnosis (and it sounds like this is what he has). The real problem is what is finding out what is causing it. I think this is particularly difficult because of its rarity and because there are so many potential causes. It is a neural problem and perhaps a neurologist is the best one to address it. The difficulty is I think getting one that is familiar with the syndrome. I am not an expert by any stretch of the imagination, but the sensations and swelling in your husband's neck struck me as a possible clue (but then again it might be coincidental). Hence my ambiguous post. I think Horner's Syndrome is associated with thyroid promlems. I think it has been associated with a dilation of the jugular vein also (although very rare, this might fit in with your husband's symptoms). These were the kind of things that I felt might need further investigation. The danger I felt might be that the neurologist could be looking too much into the nerve connections (but I might well be wrong). As for finding an expert, that is a tough one. It all depends where you live also. It might be worth considering asking your optician (if they are any good) or at a local eye hospital (if there is one).
    Anonymous 42789 Replies Flag this Response
  • You need to see a neuro/opthamologist. There is one at Southwestern Hospital in Dallas. He speciallizes in Horner's syndrome. My mom has it. The cause has never been found. The doctor in Dallas is equipped to do more invasive testing. The doctors are very rare because they have to specialize in neurology and opthamology. We were only able to find 3 in the South. We chose the one in Dallas because he seemed to have worked with Horner's more than the others. I hope this helps you.
    Anonymous 42789 Replies
    • January 15, 2009
    • 05:19 AM
    • 0
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  • You need to see a neuro/opthamologist. There is one at Southwestern Hospital in Dallas. He speciallizes in Horner's syndrome. My mom has it. The cause has never been found. The doctor in Dallas is equipped to do more invasive testing. The doctors are very rare because they have to specialize in neurology and opthamology. We were only able to find 3 in the South. We chose the one in Dallas because he seemed to have worked with Horner's more than the others. I hope this helps you.What is the doctors name? I've been diagnosed with Horner's and had lots of tests with no answers. I live in the Dallas area. Thanks, Sarah B
    Anonymous 42789 Replies Flag this Response
  • What is the doctors name? I've been diagnosed with Horner's and had lots of tests with no answers. I live in the Dallas area. Thanks, Sarah BI live in Houston and have seen Dr. Tang at the U of H clinic. She is a neuro-optomologist. I also see a regular neurologist. I was diagnosed with Horner's Syndrome but they still have not found a cause for mine either. I would also be interested in the doctor's name located in Dallas. Thank you!
    Anonymous 42789 Replies Flag this Response
  • I live in Houston and have seen Dr. Tang at the U of H clinic. She is a neuro-optomologist. I also see a regular neurologist. I was diagnosed with Horner's Syndrome but they still have not found a cause for mine either. I would also be interested in the doctor's name located in Dallas. Thank you!I to have Horner's Syndrome and mine was caused by trauma from being ejected from a car. Maybe at some point in your life you had a bad fall or some time of trauma to your body that could have caused it. Hope this info helps you all some, it's nice to see I'm not the only one in this world with this problem, as when I tell Dr's I have it they seem like they have no idea what I'm talking about!!
    Anonymous 42789 Replies
    • August 19, 2010
    • 10:39 AM
    • 0
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  • I have been diagnosed with Horner's syndrome (Aug of 2010), but not a specific underlying cause yet. I have seen some posts regarding this here, can anyone please update their status and provide information on whether they are still experiencing Horner's syndrome and any other pertinent details on cause / remedies.Thanks
    Anonymous 42789 Replies
    • January 24, 2011
    • 04:54 PM
    • 0
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