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Finally Got Blood Tests Back From Mayo


cvincent
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So some of you may recall my post a while back about my sleep study. My sleep doctor had suspected narcolepsy and after we got the sleep study results back they told me that I didn't have all the signs of narcolepsy, but I did have enough to still suspect it. So then they had some of my blood sent to Mayo to look for genetic markers for narcolepsy. Well at my doctors appointment yesterday I found out that I apparently have narcolepsy. :) weird. They can't really treat it at this point because I ended up not being able to tolerate the one stimulant that was safe enough for me to take. Oh well, I guess it's good that I don't have the more severe symptom of falling asleep during a conversation, or while driving. ( I still think it's weird that I have narcolepsy, without having those symptoms )

Candace

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Can you get a second opinion??

There is a med Xyrem which is modern version of GHB.

I was in a GHB study in the mid 90's with a doc that found GHB GREATLY controlled Narcolepsy and FM and alpha delta sleep problems..and INSOMNIA--weird to help all of those, I know. I took it for insomnia but it did not help..this was pre ANS dx when we called what I had CFS and FM.

This drug is NOT a stimulant but works to help a patient fall asleep & get restorative sleep and help the patients body create natural Growth hormone while sleeping...Provided you are INDEED Narcoleptic..or have the other problems listed above...it did not help my alpha delta sleep either.

Was it your sleep doctor or PCP who gave you the Mayo results of narcolepsy blood work? if PCP you may want to discuss your questions with the Sleep doc face to face if possible.

Dont' be afraid to ask lots of questions of things you do not understand. Good luck with getting more details.

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Can you get a second opinion??

There is a med Xyrem which is modern version of GHB.

I was in a GHB study in the mid 90's with a doc that found GHB GREATLY controlled Narcolepsy and FM and alpha delta sleep problems..and INSOMNIA--weird to help all of those, I know. I took it for insomnia but it did not help..this was pre ANS dx when we called what I had CFS and FM.

This drug is NOT a stimulant but works to help a patient fall asleep & get restorative sleep and help the patients body create natural Growth hormone while sleeping...Provided you are INDEED Narcoleptic..or have the other problems listed above...it did not help my alpha delta sleep either.

Was it your sleep doctor or PCP who gave you the Mayo results of narcolepsy blood work? if PCP you may want to discuss your questions with the Sleep doc face to face if possible.

Dont' be afraid to ask lots of questions of things you do not understand. Good luck with getting more details.

It was my PCP that gave me the results. I do have an appointment in June with my sleep doctor, maybe they will figure something else out. Thanks for your help :)

Candace

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