Narcolepsy network information
Common Questions and Answers about Narcolepsy network information
narcolepsy
d give you a link. There is also info on the narcolepsy network site that you should be able to find if you google their name and cataplexy.
Feel free to message me with questions on ruling that out (I have it).
Heiferly.
Have you consulted the sleep specialist to get the sleep study? Hope you have got lot of information on the narcolepsy. Thanks to mastkids for having shared his experience and valuable thoughts. Hope you too are able to get adequate sleep and following up with your doctor. Here are few aspects of the treatment and hope you follow few tips. Ref: http://www.emedicinehealth.com/narcolepsy/page4_em.htm
Share your thoughts and keep updating. Take care.
If you have insurance you can go by their list of doctors and associated clinics. If you have no insurance then not all states have the same medical agencies for example Scripps and Kaiser is only in California. You can always go to a large university hospital. Best to try a friend who knows the area that you are going to. I don't believe there is a network across the US that is connected.
Narcolepsy is a bizarre sleeping disorder and the effects can be devastating not only for the person who has it but their family as well.
I was diagnosed with it in February of 2008 and am still working with my neurologist to find the right medication combo. I am fortunate that I have mild cataplexy where as I do not drop on the floor I get sort of a warning sign of weakness and if I sit right down right away I am fine after a minute or so.
He was not sure I had crps though bone scan suggested it, He was talking about possible synvisc injections in 6 weeks, last resort is an epidural. You see I suffer from narcolepsy/cataplexy and pain triggers off muscle tone loss of total body so even upon inserting the injection I would go limp hear everything but cant move., part of the cataplexy.
Diagnosed with Narcolepsy. Have history of pituitary microadnoma high prolactin. PCOD historectamy 2002 On dostinex. Can something in my brain cause this. I am now on ritalin 20SR twice a day. Awake but body still tired. Also that thyroid medication had it irradiated a year ago Due to high levels.
Is there any other answer for sleeping so much. Or am I just in denial.
I have narcolepsy with cataplexy. Cataplexy is rare in the absence of narcolepsy, but I believe it is possible. You may want to get a referral to a sleep neurologist to rule out narcolepsy w/ cataplexy, even if you're not sure you have symptoms of it, especially if these attacks are bothersome to you.
The other thing you could be experiencing is presyncope, which can be accompanied by a loss of muscle tone as well as the sensation of almost passing out.
Narcolepsy is a CNS disorder and is thought to also be caused by an autoimmune disorder.
Causes: current thinking is that a group of cells in the brain responsible for sleep-wake behavior is damaged or absent. (gosh do you think the MS lesions might also damage this area for people unlucky to have both!)
Tests: The spinal fluid of most patients with narcolepsy shows the neuroprotein lacking or deficient. The neuroprotein is "hypocretin".
Looking for information for a family member who has also been diagnosed with Bells Palsy 4 times in the past few years. She is always in pain and has awful headaches and has fainted. The doctors aren't very helpful.
I've never really heard much about mycoplasma infections. (And I'm a nurse.)
I just saw a rheumatologist a couple months ago who made the comment to me "all these things could go together." It was the first time I'd heard a doctor actually say that though that's been my thinking all along. It would seem to me that certainly sleeping issues would go along with lupus and fibromyalgia!
I think it only works this way for in-network doctors/hospitals. Out of network, I think it becomes a battle between the insurer and doctor/hospital. But surely, the insurance company will not care to fight for good pricing very much before the deductible is met.
I think that with indemnity plans, it is like always being out of network. So only a very small incentive for the insurer to fight for low pricing for you until the deductible is met.
22 hours is far more than I oversleep but I lose several hours a day. I thought of narcolepsy and other problems and will ask a doctor next week. If he can help I will put it on the forum for you.
I am diagnosis with narcolepsy and have had symptoms for 5 years now. I have been taking 500 mg. of nuvigil for over 2 years. Plus, 60 mg of adderall a day. My symptoms have slowed down a little, but I have to take 2 naps a day and not drive anywhere. I have sleep studies twice a year and it seems to get worse each time. Its very aggravating to me! It seems like something would help. I see a team of specialists at Vanderbilt, but I need something else, but what? Anyone have any suggestions?
I have Narcolepsy- My vitamin B 12 level is 235- should it be higher for my condition?
Although the pt has RLS and PLMS, the arousal associated with these do not likely explain EDS- given a short overall sleep and REM latency, consider narcolepsy clinically. I had 156 arousals, 110 spontaneous, the rest due to limb movement. I also spent most of my sleep time in sleep stages 1 and 2, whith REM episodes scattered randomly. I had no time in stage 3, and when I had REM sleep it was from wake to REM with no progression through the other cycles.
The combination of this study and my first MSLT nap study produced a perfect pattern for diagnosis of Narcolepsy.
Has there ever been a study to look at the coorelation between the 2 diseases. Would many CFS sufferers be classified narcoleptic if they took the appropriate test? Narcolepsy leads back to hippothalmus and lack of production of hypocretin/orexin(?). Seems like all things lead to hippothalmus. Thank you!
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