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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 4 of 4. This is the beginning of the thread.
Posted by Daphna on April 30, 2010, at 11:37:19
Hi!
I'm new on this forum, but I've spent the past hour reading posts and I'm pretty sure I could get information here that I couldn't find anywhere else on the web.
For the past three years I have had attacks which leave me almost completely unable to walk for about 2 weeks each time (I cannot lift my feet). Two years ago my right arm also became affected. The first attack happened out of the blue and since then I have intractable upper back pain. When I'm examined, whether I'm having an attack or not, doctors find a bilateral Hoffman sign; Babinsky sign in the left foot; hyperreflexia with clonus; and other issues which always make them assume I have an upper motor neuron disease. Yet although I've had countless MRIs and 4 spinal taps, nothing shows up in my brain that explains those signs.
I have been diagnosed with hydromyelia, but the hole in the spine is apparently too small to explain the severity of the attacks. I've been told "something else is going on," but they can't figure out what.
I am not posting this in the hope that someone will diagnose me -- that would be miraculous -- but rather to get information on the effect of the meds I've been prescribed. I have two specific questions. 1. I was put on Klonopin about two weeks after I got ill, have been on it for three years, 1mg/day. Twice I was unable to take my daily dose for 3 days, and in both cases I had an attack. If the illness is unrelated to the medication, why does going without it cause an attack? 2. I am also on a very, very high dose of opiate pain killers. (My doctor said she would die if she took a third of my daily dose.) Percocet has no effect on me whatsoever so what I take is much stronger, yet I barely get any relief from it. As I write I have taken 4 oxycodone pills and the pain in my upper back is still at a 6: I'm making a huge effort to ignore it as I'm writing. I am 5'4 and 135 lbs.
For whatever it's worth, I've never been able to get drunk, no matter how much or what I drink, and anesthesia is always a nightmare (I don't go down). Yesterday my doctor said my brain was resistant to the drugs, but she didn't explain. If someone reading this is familiar with that problem, I would be immensely grateful if you could post whatever you know. Even shreds of information are better than nothing.
Thank you all so much.
Posted by Phillipa on April 30, 2010, at 13:26:23
In reply to Neurologists stumped; medication side-effects?, posted by Daphna on April 30, 2010, at 11:37:19
Honestly no idea but you do have a very high tolerance to medications it seems. I wish I knew more. Phillipa and welcome
Posted by ed_uk2010 on April 30, 2010, at 13:57:06
In reply to Neurologists stumped; medication side-effects?, posted by Daphna on April 30, 2010, at 11:37:19
Hi there Daphna,
I have no idea what is causing your attacks, but I'd like to make a few comments anyway.
>Twice I was unable to take my daily dose for 3 days, and in both cases I had an attack. If the illness is unrelated to the medication, why does going without it cause an attack?
That's very strange. Missing doses of Klonopin after long term treatment would be expected to cause withdrawal symptoms, but I don't know why that would lead to another attack.
>As I write I have taken 4 oxycodone pills and the pain in my upper back is still at a 6.......
It sounds like your pain is caused by a disorder within the central nervous system ie. central neuropathic pain. Opioids are usually only modestly useful for neuropathic pain.
Have you tried pregabalin (Lyrica) for the pain? In the UK, Lyrica is approved for the relief central neuropathic pain as well as for peripheral nerve pain. Amitriptyline is another drug which is widely used for neuropathic pain.
>.....anesthesia is always a nightmare (I don't go down)
You need to avoid total IV anesthesia techniques (TIVA). TIVA is very reliant on opioids, which you are clearly very tolerant to. You may also have some tolerance to the IV sedatives due to the long term use of Klonopin.
In this situation, inhalational anesthesia with volatile agents is likely to be much more reliable. Sevoflurane and desflurane are popular at the moment, due to rapid recovery. Both drugs can be quite nauseating after you wake up, but it's better than being awake during surgery.
Posted by bleauberry on April 30, 2010, at 15:39:05
In reply to Neurologists stumped; medication side-effects?, posted by Daphna on April 30, 2010, at 11:37:19
First, please understand I am not saying you have this.
I am saying that when all kinds of bizarre neurological things are happening that puzzle all the specialists, there are so many cases you couldn't count them where the underlying cause of all of it was one of the following:
1. Lyme disease.
2. Mercury/lead accumulation, usually from past or current exposure to amalgam fillings.Both of those are tricky to diagnose, and without advanced experience in them a specialist will usually come up with a diagnosis of negative. It is only late, by accident, with another doctor, that the discovery is made, and the previous tests and doctors were proved grossly wrong. Not their fault because they aren't experts.
You might want to do some google searching on Lyme and LLMDs (Lyme Literate MDs). Other hidden unsuspected bacteria and viruses can also mimick lyme and display your exact symptoms.
As for your medications, it is trial and error to find out what helps and what doesn't. Only when the underlying cause is treated will things work the way intended. But when you accidentally stumble onto something that does help, you may never know why it helps and there will be no explanation from a specialist, but at least your life will be temporarily improved. Keep trying. But don't at all put the diagnosis thing on the shelf. There are easy cheap things you can do to get a pretty accurate picture of what's going on. Again though, the specialists you are seeing do not know this stuff.
This is the end of the thread.
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