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In Remembrance
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Join Date: Aug 2006
Posts: 1,002
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In Remembrance
Join Date: Aug 2006
Posts: 1,002
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Ok, I was very tired when I posted, so I apologize.
The question is really that we need MORE pain medication than the usual patient.
The medical trial is "why do a few (rare) patients need so much MORE pain medication than others? Why, if they are having dental work, do they need so much more novacaine or multiple drug relief in order to get through the session?
So the questions they asked were:
Did or do you have weird reactions to alcohol? Yes, I vomit, usually by the second drink. I stopped drinking by 21 because alcohol made me so sick.
Other questions were about allergies in general -
does codeine cause anything to occur? Yes, leg rash, itching, fat lips, swollen eyes. Same for any sulfa meds, some antibiotics, etc.
The end result of this trial is that there is a rare group of people whose livers and metabolic systems do not intake certain substances like the majority of people do. Since they do not get enough to get pain relief (or any, because the body isn't using it right), they get tagged as drug seeking, or crazy.
But with this new knowledge, one, we're not drug seeking, and two, if we can find meds that avoid the liver / metabolism issue altogether, we may get better relief and healthier relief over the years we have to take these meds.
Two meds that avoid the liver would be Fentanyl and Dilaudid. This very allergic group must also use things like Milk Thistle (herb) to help the liver detox.
So this has nothing to do with neuro TOS.
This is just a rare disease that leaves a patient in pain with very few choices, much higher pain, and in a pretty hard spot since the majority of doctors don't know about the problem and don't believe the patient when they say "that doesn't stop the pain, it's still at an 8." Instead, they think we're making it up.
So we still have neuro TOS. RSD. Fibromyalgia. Disc disease. Or, a broken leg, or a tooth to cap! It's something on TOP of the presenting problem.
But I wondered IF there were more of these metabolic messes in TOS than the general populace.
In my case, Dr. Brantigan in Denver was adamant that I had an additional immunological or rheumatological disease process going on - and now I wonder if it wasn't this that he was identifying! And still "this" doesn't even have a name yet, this is cutting edge research. (I wish I had an article to post or lead you to!)
So for whatever it was worth, if to anyone, I just wanted to share this new info. as I do share all with you.
And lately, the ins. co. has been trying to whittle down my treatment, medication, even diagnoses, by constantly papering us with Utilization Reviews. (California. I do not know if other states have them.)
But we all must fight these URs because their goal is if they whittle you down to nothing they can then go into court and say, "see, he is perfectly normal and rehabilitated, there is no reason he's not working..." and they do it by bombarding you, your doctor and your attorney with URs that become too many for the doc to handle, or the attorney to have time to handle...so read up on TOSS and here and you are free to PM me with a question. It's getting really ugly with my case right now, and at a time that couldn't be worse considering my general health and those issues.
But, God bless as always, we must support one another, with love and broad understanding.
Tam
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