Discussions By Condition: I cannot get a diagnosis.

Episodic Parkinsons???

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Anonymous
  • April 30, 2010
  • 06:48 PM

My mom has seen 12 specialists over the past few years and this week was diagnosed (by a movement disorder specialist) with episodic Parkinson's (it comes and goes through out the day). The problem is, no one has ever seen this and she is not responding to Parkinson's treatrments. No one knows what to do for her and we are desperate for help. Does this really exist? Can anyone recommend where she should go to find help? If I can provide more info on symptoms, etc. please let me know. Thanks.

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10 Replies:

  • It may not be Parkinson's disease, but posssibly another movement disorder because symptoms of Parkinson's disease overlaps that of other diseases (however, the movement disorder specialist probably already knows this). What kind of tests did the doctors perform? (was the Unified Parkinson's Disease Rating Scale used to diagnose the problem?).
    Twinbird24 24 Replies Flag this Response
  • It may not be Parkinson's disease, but posssibly another movement disorder because symptoms of Parkinson's disease overlaps that of other diseases (however, the movement disorder specialist probably already knows this). What kind of tests did the doctors perform? (was the Unified Parkinson's Disease Rating Scale used to diagnose the problem?). Thanks for your reply. The doctors did not use the rating scale to my knowledge, just a thorough neurological exam. She saw a Parkinon's specialist that was adamant she does not have Parkinson's since it doesn't come and go, but he had no idea what is wrong and referred her to a movement disorder specialist in Houston. He diagnosed her with episodic Parkinson's/ism and had no real suggestions other than sending her for a dopamine uptake SPECT scan. Her syptoms include flat affect, shuffling gait, pill-rolling tremor, (predominantly right-sided weakness) and requires total assist with dressing, eating, toileting, etc. when in an episode, but she will have a few minutes of every day when she is practically normal. Her brain MRI was normal and she has some cervical stenosis which all the doctors have agreed aren't really contributing to the episodes. She doesn't really respond to the meds-only mildly to Mirapex, but is limited on dosing due to lower extremity swelling/edema. One neurologist had her on 7 Sinemet/day and we are weaning her off and are down to 2/day. We are going to try to take her to the Mayo clinic if we can get her in. Any suggestions? Thanks!
    Anonymous 42789 Replies Flag this Response
  • Visiting the Mayo Clinic seems like a good idea.When your mom experiences these episodes, how long do they generally last? Is it precipitated by some sort of stimuli? Are her actions involuntary/ uncontrolled? (as in her arm jerks to the side without her wanting to reach for something beside her). And are her motions lethargic/ sluggish or abrupt and fast?I'm researching movement disorders and hoping to find something that will fit your symptoms, but sometimes I wonder, having seen a movement specialist and many other specialists and still not recovering properly or getting proper treatment, if the root cause of this disease is neurological. Is your mom going through any stress or emotional problems that could somehow be the catalyst to this disease?
    Twinbird24 24 Replies Flag this Response
  • Visiting the Mayo Clinic seems like a good idea.When your mom experiences these episodes, how long do they generally last? Is it precipitated by some sort of stimuli? Are her actions involuntary/ uncontrolled? (as in her arm jerks to the side without her wanting to reach for something beside her). And are her motions lethargic/ sluggish or abrupt and fast?I'm researching movement disorders and hoping to find something that will fit your symptoms, but sometimes I wonder, having seen a movement specialist and many other specialists and still not recovering properly or getting proper treatment, if the root cause of this disease is neurological. Is your mom going through any stress or emotional problems that could somehow be the catalyst to this disease? The episodes seem to last several hours at a time. Her good time rarely seems to last more than an hour. She gets a warning in her right knee, it tightens up a few minutes before she gets completely weak. Her actions are still voluntary and I would describe her as in slow motion-she is trying to do things but her body just doesn't seem to listen to her. I have wondered if there is some other specialist we should see as well, but all of the neurologists have seemed to think there is Parkinsonism, but cannot explain her lack of response to traditional medicines or the episodes. I am curious about your question about stress. Another doctor mentioned that (however he offered no suggestion to help it), and I am not saying there is no stress, but nothing abnormal. There were a couple of stressors in the past, but she was having symptoms before those happened. If there is a stress component, what could we do? She is much more anxious when in an episode...are you thinking it could be a pseudo-Parkinsonism? It is hard to think that is possible, but I know there are pseudo pregnancies, etc. Thank you for your thoughts on this.
    Anonymous 42789 Replies Flag this Response
  • I'm not sure if Parkinson's disease can be pseudo. I did some research and came across something called essential tremor. It's a slowly progressive neurological disorder that is not caused by a disease and whoes underlying etiology is not clear, which could help explain why it's harder to diagnose this disease and why normal medications that are used for Parkinson's disease wouldn't help alleviate it.As for the stress, even if her major stressors were experienced before she had any noticeable symptoms, the stress could have made the problem worse. Meditation can help improve her mental capacity and health, and help mitigate this disorder. I read a book on the Silva Mind Control Method and listened to an audio book as well, and I believe the meditation exercises I learned and practice has helped me improve both mentally and physically, maybe your mother can experience the same benefits through meditation. Because your mom is not being helped (at least not at the moment) by medication, you could try alternative treatments, like psychic healing or using hypnosis in healing.I hope this helps!
    Twinbird24 24 Replies Flag this Response
  • I'm not sure if Parkinson's disease can be pseudo. I did some research and came across something called essential tremor. It's a slowly progressive neurological disorder that is not caused by a disease and whoes underlying etiology is not clear, which could help explain why it's harder to diagnose this disease and why normal medications that are used for Parkinson's disease wouldn't help alleviate it.As for the stress, even if her major stressors were experienced before she had any noticeable symptoms, the stress could have made the problem worse. Meditation can help improve her mental capacity and health, and help mitigate this disorder. I read a book on the Silva Mind Control Method and listened to an audio book as well, and I believe the meditation exercises I learned and practice has helped me improve both mentally and physically, maybe your mother can experience the same benefits through meditation. Because your mom is not being helped (at least not at the moment) by medication, you could try alternative treatments, like psychic healing or using hypnosis in healing.I hope this helps! Thank you so much for your efforts! We did get an appointment to the Mayo clinic, so I will post if anything comes of it. I spoke at length with one of the neurology clinics today, and one doc that saw her recently felt there are a few Parkinsons plus disorders that she might have-like MSA, PLS, or CBD. (Wish they had mentioned it earlier). Anyway, will post if we get any answers!
    Anonymous 42789 Replies Flag this Response
  • MSA, PLS, and CBD all seem plausible, although I don't know how to explain the episodes. If your mom is experiencing moments, up to an hour, where she is free from this disease and feels normal, then it should also be possible for her to feel normal for not just an hour, but all of the time. Did your doctor say anything about your mom's apparent sporadic and temporary remissions from this disease?
    Twinbird24 24 Replies Flag this Response
  • MSA, PLS, and CBD all seem plausible, although I don't know how to explain the episodes. If your mom is experiencing moments, up to an hour, where she is free from this disease and feels normal, then it should also be possible for her to feel normal for not just an hour, but all of the time. Did your doctor say anything about your mom's apparent sporadic and temporary remissions from this disease? My mom wants to know where you practice! :) The "episodes" are the million dollar question. No one can explain them. I have been with her for a few days and she seems to maybe have a small synergistic effect from Mirapex and Sinemet. But, she definitely does not have the typical PD response to the Sinemet. So, no. No one has offered any explanation for the "normal" time, just that it can't be PD. Hopefully someone at Mayo will know!
    Anonymous 42789 Replies Flag this Response
  • I don't practice anywhere yet, I'm still just a student and prospective doctor (but thanks for the compliment :)).Mayo will hopefully bring you promising results, and I'm sure this problem will be resolved soon enough.
    Twinbird24 24 Replies Flag this Response
  • I'm still wondering, though, if these episodes are caused by some sort of stimulation. You should note what happens exactly before an episode, like sudden stress or pressure, a certain food that she eats, the environment she is in, what she is talking about or thinking about, anything that may seem to affect her.The disease may be a type of periodic paralysis or episodic ataxia. A cause of ataxia is vitamin B12 deficiency - you could get tested for B12 deficiency to see if it's a factor in your mom's disease.
    Twinbird24 24 Replies Flag this Response
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