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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  • Dear shaking away,My daughter is having similar shaking problems, and is also lacking answers. Her shaking started with her legs during an illness and within a day or so spread to the rest of her body. Sometimes she just has one or two twitches that may look more like a tick, she may flail and throw the soup out of a bowl while still holding the bowl, or she may look like she is having a seizure. Almost all of the testing came back negative. Epstein Barr and Mycoplasma Pneumoniae came back positive, she is slightly anemic, (RDW and Anisocytosis are high), and her glucose came back a little high. Her PCP gave her Doxycycline for a month with no change in her condition. She hurt her upper back in a car accident, but she does not have a history of lower back injury. She thought her movements started around T10- L1 and went up, down, or both from there. Now she pays less attention to how she moves and more to preventing the movements. She has been avoiding fatigue by taking naps after lunch or at other times if needed. She has dizziness, joint pain, and all over pain intermittently along with her movements. She has mental symptoms as well. Sometimes she is moody, although she is a teenager. When she shakes a lot, she gets into a mental fog where she may not remember what happened; and if you ask her a simple question requiring a decision she responds with “I don’t know.” We have a family history of bipolar disorder also. My daughter has had MRI’s of her brain, but not of her spine. She had a SPECT scan and a 24-hour EEG with video monitoring. All negative. She does not have epilepsy, although I did not think she did since she is conscious when she shakes. They dosed her with plenty of valium to do the last MRI since she was shaking a lot. The valium stopped the shakes and knocked her out. Please let me know if you get any answers and I will post again if we come up with anything.
    Anonymous 42789 Replies Flag this Response
  • I apologize for being so late in replying. I had my first post and stopped getting any replies, so I made a second post and didn't get any replied. After only a few months I stopped checking for any replies. Just when I was considering a third post, I found I had gotten 2 replies on the same day!To Blaze, I would like to say "thank you for guiding to the Lyme disease site." I have been looking at it and find that I have or have had almost every symptom they mention! I am still without a diagnosis and getting worse. I will definitely make a post on their site to get an opinion about whether lyme disease may answer my "very perplexing, multi-system" disorder, as my docter(s) have described it. To my knowledge, none of the doctors I've seen have even considered lyme disease.To the mother whose daughter is suffering with similar symptoms, I hope you have read Blaze's message and visited the websites mentioned. Lyme disease may be your answer, too. Good Luck!!!I'm going to close so I can post to the other site now.Thanks, again. I may not get any answer but I grasp at every chance I get to find out what is causing my incapacities and suffering!
    Anonymous 42789 Replies Flag this Response
  • Blaze, Thank you for the info. I went to the Lymenet to post a thread, but they have so many rules about posts I wasn't sure what to say. I did check out the option to find a doctor. There seems to only one in Arizona in Scottsdale, about a 3 hour drive. I wouldn't mind making the drive, though I would have find a driver! The problem is he is a naturopathic doctor and my insurance will not cover him. I used up all 3 of my attempts to find a doctor in finding this one, so can't go back and check there. Also, if I go out of state, I would have difficulty getting coverage anyway. I have Medicare and AHCCCS (Arizona's version of Medicaid). AHCCCS requires a referral to go to anybody except your PCP and I know they would deny coverage for an out of state visit to anybody! I definitely cannot afford to pay the after-Medicare portion of the bill, assuming Medicare covered it. I live on SSDI and have custody of my 9 year old grandson, so 2 people living on what is intended for 1 leaves nothing left over. I really felt sorry for Sarah Dacre. Apparently, she can't even get on social security (or was she in the USA? I forgot. How does she survive?) What do you think of me just asking my PCP to test me for Lyme Disease? I know the advice is to go to an LLMD doctor, but that doesn't seem to be an option. Do you have any advice? I don't know what to do. I think I could possibly have the electrical sensitivity, too. I don't know anything about the chemical sensitivity. However, if it has anything to do with reacting to medications and chemicals diffierently than how one is supposed to react, I have that problem. I know my PCP won't test for those and the other things you mentioned. Does Lymenet have any financial aid for people in my situation? Probably not, but it's worth asking. If you don't know, do you know how I would find out? Well, anyway, thanks for all your help. Hope to hear from you soon. I was sorry to hear that you suffer from so many things, too. Hope you feel better!!
    Anonymous 42789 Replies Flag this Response
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