Discussions By Condition: Medical Stories

shaking away

Posted In: Medical Stories 10 Replies
  • Posted By: Anonymous
  • February 12, 2007
  • 00:48 PM

Hi,
I'm new this forum, so please bear with me. I will try to stay brief, although I have multiple problems. My primary complaint is with undiagnosed dyskinesia. I have abnormal movements that are quite debilitating. It started 2 years ago on Thankgivings evening. I drove to my son's house (about a 3-4 hour drive). Ordinarily I would have stopped once or twice but my grandson (whom I have custody of) was sleeping all the way and I didn't want to wake him, so just kept driving. When I arrived, I was in a great deal of pain. I have been suffering from severe TMJ, neck pain, and upper back pain radiating into my chest and both arms for several years. All of these pains have always seemed to be more persistent and severe on the left side of my body. Anyway, my pain in all of these areas was very extreme after driving non-stop for so long (I know, it was stupid!). I have also had problmes with chronic mid-abdominal pain and nausea, also undiagnosed for several years. We had thanksgiving dinner. I had severe nausea before, during, and after the meal. I finally asked my son to blow out all the scented candles he and his wife seem to be crazy about. They were all over the house and seemed to be contributing my nausea. I was also getting more and more light-headed and whoozy. Before we went to bed my son gave me a deep massage of my neck, upper back, and shoulders. This seemed to help the pain very little and my other symptoms were worsening. Immediately upon going to bed I started have severe spasms in both of my legs. This was totally new to me and I thought it was probably from all the driving. I was awake all night with these spasms and they continued when I got up in the morning. I could hardly walk due to the severity of the spasms and my son took me to urgent care, where I sat in severe spasms for 4 hours and finally went to the ER for 13 hours. During the time I was in the ER, the doctor was giving me Demorol for my pain. My spasms were speading up my body as I lay there. They ran very few tests, found nothing and discharged me with a prescription for pain medication. It was about this time I realized the doctor thought I was drug addict or something and just come in for drugs!! I went home very angry. Several hours later I was still having severe spasms that were all over my body. Finally, I was sitting on the edge of the bed talking to my son when suddenly I fell over in mid-speech. He lifted me back to a sitting position and I fell again, as I was totally unable to maintain a voluntary position at this point. My entire body was spasms and now I could not speak, just make nonsense, repetitious noises. I was taken back to the ER per ambulence. After 8 IV doses of Valium I was still spasming uncontrollably but had very limited speech. I never lost consiousness and was totally aware of everything happening during the entire episode. I spent 3 days in the hospital and all testing that was done was negetive, except for a very mild pottasium deficiency. I was given potassium without any relief. 2 years later, I am somewhat better. I have figured out that certain medications worsen my symptoms, as well as any type of stress (physical, mental, emotional). I have learned to pace myself in everything I do, but still sometimes have severe episodes. Most of the time now my "spasms" are primarily in my neck and upper back, sometimes into my arms. Occassionally they are total body and rarely I lose my ability to speak. I have found that Valium sometimes helps. If I take it early enough it might even stop an episode. I have learned that increasing nausea, whooziness, and sometimes hot flashes are pre-warning signs of impending episodes. I try to take Valium immediately when these symptoms present themselves and then rest if that is a possibility.
Other medical problems include: probable fibromyalgia and/or possible myofascial pain syndrome, severe TMJ, history of left sided Bell's palsy, history of T12 compression fracture (never treated, but now healed, and doctors say unrelated to my movement disorder), sleep apnea. I have had lifetime problems with chronic depression, insomnia, and PTSD.
Work-ups have included brain and spine MRIs, ECG, EKG and other heart testing, GI endoscopies. I have seen multiple neurologists. I was thought to possibly have dystonia, but results of the testing was questionable at Mayo Clinic, so I was advised to seek other opinion (this was about the 5th opinion I had sought and in Arizona, there's no place else to go after you've reached Mayo Clinic level consultation!) I have also been told that I may have a conversion disorder. However, I have sought opinions from 3 psychiatrists, all of whom feel that my disorder does not appear to be psychiatric, as I don't have a "hystrionic personality."
Sorry to have rambled so long. Is there anyone who has any suggestions on where to proceed from here????
Thanks.

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10 Replies:

  • Sorry about your troubles. Have any possibilities been given? What did the ER and neurologists say? If it seems to be brought on by stress, I would highly recommend Yoga.
    Anonymous 42789 Replies
    • February 13, 2007
    • 01:29 AM
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  • If you live in AZ I would think there would be a lot of alternative options to consider? Have you tried acupuncture, or naturopathy or chiropractic? They could look at your symptoms in a different light. I know the University of AZ in Tuscon has an alternative medicine program...Dr, Weil is head Doctor there, I believe. Traditional Chinese Medicine considers muscle spasms to be a Spleen/Liver inbalance, often complicated by wind. We treat this very successfully with acupuncture and Chinese Herbs...it is also brilliant for stress, depression, and PTSD. The low potassium could also mean there are other mineral deficiencies: B5 can cause nausea, insomnia, depression, muscle spasms, and poor coordination. Deficiencies like this are often overlooked. It could be contributing to your problem. There are two supplements I typically recommend to my patients: 1. INTRAMAX - this is fantastic, and expensive. It is a liquid supplement containing over 415+ nutrients. www.druckerlabs.com for more info.2. EmergenC - readily available, this provides quite a bit of potassium and B vitamins. I recommend 2-3 per day. Lastly, it is important for you to look at all the meds that you take, even ones you've been taking for years. Visit www.drugs.com and look them up. Sometimes a med can cause these type of reactions, even if you've been taking them for years without any side effects. Just a few things to consider - best of luck and hope this helps.DOM
    acuann 3080 Replies
    • February 13, 2007
    • 01:37 AM
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  • Thank you for the replies. As to yoga, I haven't tried it. I'm not sure I could do it with my chronic back pain? I know it requires sitting with legs crossed and I cannot do this, nor can I move about on the floor, as I cannot get back up. Any suggestions? I would be willing to try it if I could figure out a way to not aggravate my chronic pain problems. To the second responder, I checked the medication website you gave and found that I am not able to find side effects of my medications on it. I'm probably using it wrong. I'm currently taking Lipitor, Valium (as needed for muscle spasms only), Skelaxin, Prevacid, Tramadol, and Atenolol (for tachycardia, not high blood pressure). All of these were started after I began to have problems 2 years ago except the Skelaxin and the Prevacid (which does nothing for my abdominal pain). I had previously been taking antidepressants and antiemetics. I learned that these drugs can cause tardive dyskinesia and so I stopped taking them. I did get some relief from stopping them, but not completely. The neurologists and psychiatrists have told me that my symptoms are not typical of tardive dyskinesia, but I can't help wondering why stopping those medications did give me some relief from my dyskinesia symptoms. I refuse to take any more of them, even though the doctors keep trying to get me to, as I am "being unreasonable." I have recently had blood work done, which included lipid panel; CBC with diff, w/plt; sedimentation rate THS, high sensitivity; comprehensive metabolic panel. All results were normal. I have been taking a multivitamin, along with an added vitamin c, and a B complex. I started these on my own because I wondered if I might have some vitamin or mineral deficiency. I don't know if they are helping or not. I am on AHCCCS, which is Arizona's Medicaid program. I do have Medicare primary. I don't think I can get coverage for accupuncture or the other things you suggested (I don't know what naturopathy is?). I can't afford to pay for them myself. I will check with the University of Arizona and see if Dr. Weil is a Medicare and AHCCCS provider. If so, I might be able to get a consultation. I did see a chiropractor, who saw me free for one consultation as a favor to one of his long-standing patients. He found more abnormalities in his exam than the neurologists and other doctors have found. However, since I cannot afford to pay him, he only suggested that I try elevating my left shoe higher than my right, as he discovered that my pelvis is very tilted. He thought that might decrease my back pain. I tried this for about a year, but found it to increase my back pain and sciatic pain, so finally gave up on it. I checked the supplement medication websites but found no prices listed. I need to know the cost before I could consider them. Do you think they would be better that the OTC supplements I'm taking? Sorry, I rambled a long time again. I tend to do that when I'm confused and concerned about something and I can't seem to find any answers. I'll close now. Please let me know if you have any further suggestions. Thanks, again.
    Anonymous 42789 Replies
    • February 13, 2007
    • 09:17 PM
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  • Sorry, I forgot to answer the other questions. The possibilities I have been given for diagnosis are dystonia, Wilson's disease (which was only partially worked-up because my doctor "dropped on the ball" and now he has retired and my new doctor won't finish the work-up.), and conversion disorder. One of the psychiatrists I spoke to said that my "spasms" sound like atypical seizures to him. I had been told they were not seizures because I never lose consciousness. But he said there are some rare types of seizures in which the patient does not lose consciousness. He tried treating me with a trial of Dilantin, but I had an allergic reaction, so no further attempts have been made in that direction. I'll stop rambling now.
    Anonymous 42789 Replies
    • February 13, 2007
    • 09:25 PM
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  • You're not rambling! As for Yoga, it is actually recommended for back pain. I am not a Yoga guru or anything, but it seems to calm both mind and body and strengthens the body. You could see if you could get a "Yoga for Dummies" book off Ebay - I found one quite cheap. I am not saying it would cure you, but certainly couldn't hurt and may very well help. Is it possible the chirpractor would set up a payment plan or something for you, even to have a treatment every week or so? It wouldn't hurt to ask. They are supposed to be all about helping patients. Good luck - I hope you feel better soon.
    Anonymous 42789 Replies
    • February 14, 2007
    • 00:28 AM
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  • I'm sorry to hear about your suffering. Have you ever had whiplash in the past(even if it was many years ago)? Sometimes a good pro massage can help esp someone trained in NMT or Trigger Point. Hang in there! Sounds like you take care of others and are a wonderful person. Take good care of you, Okay? MASSAGE!!! (good idea...think I'll sign up)
    tingly 8 Replies
    • February 14, 2007
    • 00:57 AM
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  • Unfortunately, medicaid and medicare don't cover acupuncture - yet. I sure hope this will change, as it is such an economically viable treatment!Still, I know that there is a naturopathic school in Phoenix (can't remember the name) where you could most likely get treatments at a very reduced rate. Naturopathy is like an umbrella field for lots of various alternative forms of medicine including acupuncture, homeopathy, and others. Ask around and see if you can find a practitioner who uses a sliding scale fee. In my practice, I will never turn down a patient because they can't pay, and have several who pay whatever they can...I know there are other acupuncturists out there like me - maybe you will find one! Concerning your meds, I did look them up on www.drugs.com and found some possible interactions you should be aware of. Here is what I found (they include the generic names): atenolol and metaxalone (moderate Drug-Drug) Description: MONITOR:The concomitant administration of agents with hypotensive effects and psychotherapeutic agents (e.g., anxiolytics, sedatives, hypnotics, antidepressants, antipsychotics), narcotic analgesics, alcohol, or muscle relaxants may additively increase hypotensive and/or central nervous system depressant effects. MANAGEMENT:During concomitant use of these drugs, patients should be monitored for hypotension and excessive or prolonged CNS depression. Ambulatory patients should be made aware of the possibility of additive effects (e.g., drowsiness, dizziness, lightheadedness, confusion, orthostasis, fainting) and be cautioned about driving, operating machinery, or performing other hazardous tasks, and to arise slowly from a sitting or lying position. Patients should also be advised to notify their doctor if they experience excessive side effects that interfere with their normal activities, or dizziness and fainting.http://www.drugs.com/xq/cfm/pageID_1150/int_1/list_1/values_drugid%3Dd00964%26drugid%3Dd03828%26drugid%3Dd03826%26drugid%3Dd00004%26/OpText_atenolol/dr_%2CSkelaxin%2CPrevacid%2Ctramadol%2Catenolol/qx/images/s2.jpgmetaxalone and tramadol (moderate Drug-Drug) Description: MONITOR:Central nervous system- and/or respiratory-depressant effects may be additively or synergistically increased in patients taking multiple drugs that cause these effects, especially in elderly or debilitated patients. MANAGEMENT:During concomitant use of these drugs, patients should be monitored for potentially excessive or prolonged CNS and respiratory depression. Ambulatory patients should be made aware of the possibility of additive CNS effects (e.g., drowsiness, dizziness, lightheadedness, confusion) and counseled to avoid activities requiring mental alertness until they know how these agents affect them. Patients should also be advised to notify their physician if they experience excessive or prolonged CNS effects that interfere with their normal activities.You said that you were also taking some antidepressants before you had the initial episode, but stopped them - do you know what they were? I highly suspect the combo of these drugs along with your long drive may have caused this, and you are perhaps having lingering problems with taking the skelaxin, tramadol and atenolol. Doctors just don't see these interactions. If your doctor will listen, you might request he look each of these up in his drug refernce book and he might come to a similar conclusion. Perhaps a dosage adjustment is all that is needed. Last thing (now who's rambling:) ?) You must NOT take orange or grapefruit with the atenolol as it causes interactions. This includes juice. Also, no alcohol. Hope this helps and best wishes.DOM
    acuann 3080 Replies
    • February 14, 2007
    • 00:58 AM
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  • Thanks for all the input!!I will check into getting a yoga book. Maybe there are some techniques I could use. I regret I can't afford a massage therpist at all. I called the chiropractor I saw previously and he did agree to see me at least once more and accept Medicare only, so some good news! I'll be seeing him tomorrow. I will also check on the naturopathic school in Phoenix. Maybe I can find it on web. Thank you so much for the information on my medications. I was quite shocked. Nobody has mentioned any of this to me, not even the pharmacists. My previous family doctor was easy to talk to and I could have discussed this with him. Unfornately, he retired, and I'm left with a doctor that discourages questions or comments. He just wants to get in and out of the room as quickly as possible. I want to find another primary physician but in the small town where I live they are hard to get. All the good ones are not taking new patients! However, the Tramadol and Skelaxin are medications I take for pain and muscle relaxation. I could stop them without talking to my doctor about that. Is there something you would recommend instead of these that would not cause interactions with my other meds? I really appreciate your help in all of this, as I have been feeling quite abandoned by the medical community in general. You've made me feel better already, just for trying to help and not pushing me aside! You asked about the antidepressants I used to take. Basically, I have suffered from chronic depression for several years. It seems to be an hereditary tendency. Many members of my family suffer from bipolar illness. I have never been diagnosed bipolar, but suspect I am bipolar depressive. Anyway, antidepressants don't seem to help me much, if at all. Therefore, I have been on several different ones over the years. My psychiatrist has tried what he has described to me as "everything in the pharmacy" to help my depression and chronic insomnia. I have taken the old types and the new types, with little or no relief. I can't remember the specific medication(s) I was taking at the time this mess started, sorry. I have also taken several different kinds of sleeping pills with little or no help with sleep. And, the ones that are combinations for insomnia and depression. Lastly, I should mention that they did try giving some antipsychotic medications in the hope that might help. Strangely, when I completely stopped allowing myself to take any of the above types of medications, my depression began to dramatically improve! And I have never had as severe of episodes of depression since stopping the meds as I was having on them. The psychiatrist tells me that is just coincidence. That makes 2 coincidences - decreased depression and decreased dyskinesia - off of the psychotropic meds! My plan is to never take any of those medications again. Does any of the above confirm or rule out your hunch about the cause of my dyskinesia? I hope you might be able to give me some insight. If it does appear to be the cause, do you think it will eventually go away? What should I do in the meantime? I will check into the things we've already discussed. Thank you again, very sincerely, for your concern and help!
    Anonymous 42789 Replies
    • February 14, 2007
    • 06:57 PM
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  • Forgot to mention,Yes, I did have an auto accident about 30 years ago, with whiplash. I have had multiple problems with my neck even predating the accident. As a teenage I had torticolus several times but then it seemed to go away. I also have severe TMJ problems. I was advised about 20 years that my left joint was completely deteriorated and the right one would be in approximately 5 years. This advice was not totally accurate, as I was told I would not be able to move my jaw when the right joint deteriorated, but I can still talk, have to eat soft, easy to chew foods, though. I have had no treatment for my TMJ since that 20 years ago doomed forecast. I simply gave up. TMJ treatment is for rich people, not people like me, and it seemed there wasn't much point in it anyway. But, according to research I have done, the neck pain and the TMJ are probably related. In fact, the possible diagnosis of dystonia I was given (but never confirmed) could account for both the TMJ and the neck and upper back pain that I have suffered from for years. When you have your massage, have one for me too!:)
    Anonymous 42789 Replies
    • February 14, 2007
    • 07:09 PM
    • 0
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  • Sorry, I had technical difficulties and couldn't post anything for awhile there!I have seen my chiropractor twice and he has done some "minor adjustments.' He says he is going to go very slowly because I have alot going on. I have some concern, though. I actually feel worse since I started having adjustments. My pain in not really much different one way or the other, but the dyskinesia symptoms have worsened dramatically! The doctor says this is to be expected and should pass in a few weeks. I am very leary of continuing on the assumption that it will pass "in a few weeks." If it doesn't pass, I'm just subscribing to treatment that is making me worse. I'm getting 3 treatments a week. That means I have to go back on Monday and am really nervous about that.HELP!!!! Is this reasonable, or he misinforming me?? Please advise.Also, I had mentioned stopping some of my meds (Skelaxin and Tramadol) and had asked if there was something possibly that could be substituted and not cause interactions. Does acuann have any answer to that for me? If not, any opinion about what to do. Approaching my primary care doctor is a joke. He won't give me the time of day if it means he has to stay in the room 2 seconds longer than absolutely necessary! As I mentioned, I'm trying to find another, but not so easy in a small town. As always, thank you for your time and consideration.
    Anonymous 42789 Replies
    • February 17, 2007
    • 06:32 PM
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