Discussions By Condition: I cannot get a diagnosis.

still shaking away

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • May 24, 2007
  • 10:29 AM

A few months ago, I posted regarding my condition - please see "shaking away." I did get some advice and have tried following through on it. I have been seeing a chiropractor for a while and he has helped me a great deal with my chronic back and neck pain. I even had a temporary decrease in my abnormal movement problem. However, I now am having increasing difficulty again with "dyskinesia" or abnormal movements. These are mostly upper body involuntary movements at this time, but occasionally still have total body movements and/or muscular rigidity which causes me to be unable to move or have extreme difficulty moving. I fear I am getting worse again.
I do have some new information. When I improved from the chiropractics and my movement disorder almost stopped, I began to notice that I had a definite problem with hunger-induced tremors. I talked to my PCP and he referred me to a dietician for probable hypoglycemia - no testing was done to confirm this diagnosis. I have been seeing this dietician for about six weeks now. She is baffled by my situation. She has been having me eat six mini-meals per day and watch the carbs, etc. She has also been having me monitor my glucose levels. She is confused by the pattern - or lack thereof - of my blood sugar levels. Sometimes I can have symptoms of severe hypoglycemia and my finger stick will be in the 90-100 level, other times I feel fine and my finger sticks are in the 60-70 level. I have gone as high as 171 and having severe symptoms suggestive of hypoglycemia! She feels that I definitely have some type of sugar problem, either hypoglycemia or diabetes, but my symptoms are so baffling that she is finding it impossible to control with diet. I have an appointment with her tomorrow. She says she will probably refer me back to my doctor for testing - which should have been done before I went to see her! - if she still can't figure out what's going on.
Anyway, all this problem with my glucose level has made me aware of other things. I've noticed that any type of stress - emotional (good or bad), increased fatigue (I have been diagnosed with chronic fatigue syndrome, so general fatigue is pretty much constant), pain, hunger, etc. - tends to set off my movement disorder. I have consulted many neurologists, but do have an appointment in June to see yet another one. I have also consulted psychiatrists. Everybody seems to have a different opinion, but it all boils down to the simple point that they have no clue what it going on with me. Some doctors say my neurological examination is completely normal, and all testing done has been normal. Others do find abnormal neurological findings, such as bilateral foot drop and left sided weakness, but have no answer as to why. I also have congenital ptosis (droopy eyelids), which worsened on the left side after a bout with Bell's Palsy a few years ago. The BP also left me with some left-sided facial drooping and weakness.
Mostly, they keep pushing me to see psychiatrists, saying it is probably a conversion disorder, but my symptoms don't fit with this diagnosis. I have seen 3 psychiatrists, all of whom say it is not a conversion disorder and urge me to seek another opinion from a neurologist - how many do I have to see? The psychiatrist I have been seeing lately has been experimenting with giving me various antidepressants and mood stabilizers - I do suffer from depression and insomnia - but these seem to increase my abnormal movements after only a short time. I have recently told her I want a diagnosis and will no longer submit to being a lab rat and taking medications just to see if they help.
I also suffer from chronic pain. I have had back and neck pain for years, which my chiropractor is helping, but this is not the only pain I have. I have had wrist pain for several years. I was diagnosed with carpal tunnel syndrome and had surgery on my left wrist about five years ago. I never had the right one done because I had no relief from the left one. Now, the pain on the left side runs from my inner wrist all the way to my elbow and on the back on my left hand and up my forearm about half-way to the elbow. The right wrist is about the same as it was five years ago, except occasional pain on the back of my hand or the inner aspect of my forearm. I've also had similar problems with my feet, which have been diagnosed as plantar fasciatis and heel spurs. The podiatrist cannot seem to explain why I also have pain on the top of my right foot, as this is not typical of his diagnosis. I don't know if these pains are related to my movement disorder or not, but I intend to talk to the neurologist about them when I go. He can't do any worse than send me packing off to another psychiatrist!!
If anyone has any suggestions, please help. I have history of chronic fatigue syndrome, chronic Epstein-Barr Virus, sleep apnea (not helped by CPAP), insomnia, chronic depression, severe TJM and craniofacial asymmetry, various chronic pains, but most importantly undiagnosed dyskinesia.
Thank you for your time and consideration. I know I left out a lot of information, but if you refer to my previous post "shaking away," it should fill in some of the gaps.

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