One day from my experience I invited everyone to post their own.
The free care or at least hospital charges was for me the most concern.
Insisting and yelling to the web for me and all came the reply.
Intramed, is a site created for and by doctors who dumped updated information on different diseases and gave him a place to narcolepsy.
The information is interesting and above all reliable.
The part that we, the seekers of answers to our disease of interest is the care and accurate diagnosis.
Copy of the data, do not forget that is the job of reaching Intramed many professionals. I am deeply grateful to Dr. Maria Prats for permission to quote this information!!!
Narcolepsy
Also known as:
Gelineau syndrome,
Narcolepsy-Cataplexy,
Hypocretin-deficient narcolepsy.
Narcolepsy is a relatively rare sleep disorder, but is rarely diagnosed correctly. Its main symptom is the presence of "sleep attacks", "unexpected and compelling" that manifest themselves during the day. These are present in 100% of cases and can last from minutes to an hour. Other less common symptoms include cataplexy or cataplexy (70% of patients), which is sudden and reversible loss of muscle tone. It is usually partial, limited to the muscles of the face and neck and its duration is very short (<1 min.). The episodes may be triggered by intense emotion (eg,: laughing, crying, anger). Sleep paralysis (present in 25% of patients), is unable to make any movement in the transitions between sleep and wakefulness while the person is fully awake and alert.
Sleep hallucinations (present in 30% of patients) are generally hypnagogic (at the transition between wakefulness and sleep), and can be visual, auditory or somatic, and are very vivid. All these symptoms are manifestations of abnormal intrusion of REM sleep or in waking life. In spite of having excessive daytime sleepiness, nighttime sleep is often interrupted and nightmares abound. Despite being considered a rare disease, narcolepsy is as common as multiple sclerosis or Parkinson's disease is more common than cystic fibrosis , though less known.
Reference centers and specialists:
"University Center of Neurology: Dr. Jose Maria Ramos Mejia"
The Center is located in Ramos Mejia Hospital, located on the street Urquiza 609, Buenos Aires, Argentina
TE: 4127-0438 and 4127-0281
Website: http://www.ramosmejia.org.ar/
It works in the Division Neurology, Ramos Mejia Hospital in Buenos Aires, and its leadership is exercised by Prof. Dr. Raul C. Rey. The application turns the care of patients in the different subspecialties is made in person Monday to Friday from 8.30 to 11.30. or the following TE: 4127-0438 and 4127-0281.
The Second Opinion Clinic, works exclusively for medical referral, arranging shifts to Dr. Alejandro Giachino.
They serve all kinds of neurological diseases, specialized clinics exist at:
- Epilepsy
- Abnormal movements,
- Headache,
- Vascular Diseases,
- Neuroimmunology,
- Cognitive disorders and dementias,
- Neuromuscular Diseases,
- Demyelinating Diseases,
- Myasthenia Gravis,
- Motor neuron disease,
- Neurogenetics,
• Pathology of Sleep.
Now I greet you once again and hope to continue discussing their experiences and needs. We can see that being "awake" achieve the desired "quality of life" I have good dreams
Sleeping Beauty
July 1st 2009 at 6:06
need to know these places to accommodate us. He also asked whether in my case I take modafinil I can get more discount if I go to a hospital now buy any individual because my neurologist is not the prepaid that has my family treat me not accept because it is a preexisting condition but had never found me . They think it is genetic and not just cover it. To you it happened to you? in another post you said you took a private hospital, is the same?
Thank you!
Martha
July 3rd 2009 at 9:53
Holas, the reason for my sudden disappearance is explained in this post I just left in narcolepsia.com.
Volks Wagen ...
I have a white sedan brand Volks Wagen, a classic 1980 with many dents, some of my friends make fun of me saying that I wash with stones. You and I know, however, never wash it, and here I confess today that just keep it in the minimum to run.
In that vehicle all the days I work, and even in the most terrible moments of this rusty mine sleeping sickness, I quit using it, at the risk of my life and the lives of others; ¿irresponsibility?, Such time.
The bus? What about adding two more hours daily ordeal of the working day?, No sir, not that; Selfishness?, Perhaps.
From the streets, highways and roads of my small town (which may well also be described as a large town) that lead to my workplace, chose those with low traffic and low speed tried guide.
Obviously, driving slowly, most of the time it was not possible, because I almost always get up late after smiting of one hundred to one thousand times the little button, than any alarm clock made in China, is inscribed with the legend "snooze".
Nor was it possible, of course, always driving in the wilderness, for those times, tried to invent mnemonics to remember the crosswalk, the cruise (with or without light), or any other obstacle that I could deal with a pedestrian or a driver in a hurry, angry, pedestrians and drivers in a hurry and angry small towns that mimic pedestrians and drivers in a hurry and angry in large cities.
"After the bridge go watch the school," such were my mnemonics, or at least it should have been, what good is a technique to remember if you're so sleepy you can not concentrate to achieve memorize three words in a row? , ¿write?, what mnemonics read the drive?, would not add a pinch more than the mere stupidity stupidity of drowsy driving?
- Fuck you! - I cried a pedestrian in a hurry and angry when I was about to run. This phrase, that phrase, that phrase (since pronouns are also a matter of distance) is the highest offense that a Mexican can utter to another Mexican. In Mexico, even such an insult, exists in musicalized and less refined versions such as wheezing (wheezing) and horn.
Parenthesis is strange, in fact it is interesting that for a Mexican offend another Mexican achieved is sufficient to remind the hole from whence it came.
Well, I mean with all this woolly (verbiage), which to my car and Volks Wagen, since I am one (of few) patients sleep, nothing gave up: I continued to work (I had no choice), studied a master, I learned the English language (although I do not understand, nor read, nor speak, nor write), I passed three of eight subjects of computer majors (someday, maybe finish), and got married (maybe this is all you need explanation, as it is known that to marry something must be sick).
The quality with which he has done all that is the subject of another story, however advance, I'm not going good husband (I steal this last sentence Skinny Ubeda, who was once staunch supporter).
Epilogue: a consequence of my folly, a few days ago I made my debut as a parent. For the future of this pretty girl, now I tremble with fear ...
From the pen of that dreamless sleep, Lord Bello Sleeper.
5th July 2009 at 12:05
Congratulations Sleeping Lord Bello, my compliments for that girl! You will be missed around here and see that there is new, have contacted us Intramed, the ever feisty Ocean from the NEA continues to full, so that would not seem to sleep! Thus, we have at times a clarity that exceeds (what humility) than the rest and there are others in which the RAM along with REM play tricks on us and we must resort to mnemonics .... although I have doubts that. I find that being quiet with no pressures of everyday life (work, bring order in the house, read, study and take us through life) memory works fine.
But we are here, with "responsibilities" and the self-demand of wanting to do well, lest they think that we can not .....
When I was little and studied piano my teacher said it was Mozart, but then regretted his words ... ha ha ha is that my classes were after school, after lunch and nap and wanted .... not even know me! !! I mixed the staff and felt that "forgot" the difference comes in the semi quaver and then moved to guitar .... ... then with English ... then with ....
Poetry for me is the common thread, that thread of Ariadne, between my brain and me. The words have rhythm minimalist images of semi-sleep and I even publish!
I have no car and the route except I do not like driving in the city, of course when you have the good fortune to move to a small town I do, if we manage well our rhythms can drive a car.
Again welcome your writing style, you could give a seminar on ways to wake up? I'm getting three alarms, the phone is the fourth and not always achieved, excluding the days when two hours before I'm standing wondering whether to sleep or tell me, winning for the day, on the clocks.
Dear, gets a big hello from Argentina. By the way, you are Lord!
Good dreams
Sleeping Beauty
5th July 2009 at 12:20
Hello Mary Martha, sorry it took me to answer. Maybe you should go to the Hospital of Clinics or another, to see a neurologist explaining your situation and ask for a referral to the Ramos Mejia. I wrote in this post is not mine, is an excellent information source quoted as explaining.
Yes happened to me when a doctor suggested that I attach to Htal. Britain. The questionnaire for admission, explained what was happening and did not understand it well.
Although polysomnography had a first ... there was no strong opinion. That is, did not claim that Narcolepsy is understood?
Consultation in neurology do I attend with a note from a psychiatrist who says he does not suffer from any psychological disorder and narcolepsy is suspected latency test is requested. When I want to authorize them are slow ... the day I receive a call telling me to stay exempt in the plan of neurology services as this is a preexisting condition. Obviously I deleted it because that hospital had admitted having paid fees even when I explained to the developer that "something" was. I think with the amount I was paying for the study, especially when it is not necessary to repeat a lot, would have required only one visit every three months off drugs ... very little, no?
I hope you follow the little steps to be taken to cover!!
A greeting
Sleeping Beauty
July 6th 2009 at 9:30
Hi Sleeping Beauty
¿Lead Wire? Tell me what book did you get that dark pair of words, and then tell you if we have four things in common.
Greetings again.
July 14th 2009 at 5:56
Sleeping beauty, what book? I do not know what will reultado read and dreamed, and from one part of my brain goes a thread that leads to my hand at writing. Cre that sensations of sleep paralysis can range from despair to contemplation (I started Zen) thereof and words, do the words we are taking out of the darkness, then remain on paper, poem or prose. For others I guess will be painting or music.
A salute Lord
Beauty
14th July 2009 at 12:52
Hi Sleeping Beauty
For this season my rare diseases flare up, joules each year meant to me the beginning of a sleepy costs that will last until mid-January next year. This puts me in the same mood that you are looking for a bear and can not find a cave to hibernate. This odd feature of my strange illness is perhaps the strange reason why a strange doctor diagnosed me, a strange day in July 2007, an equally strange condition, Kleine-Levin syndrome.
"Lead Wire" are two words in a book that you read and you should not read. I do not know because obviously you're very young, I know, because I'm older and I studied at a college with a curriculum terribly anachronistic. This book was originally written in German by an old bearded man whose photograph is currently used to frighten children, yet every line of that book (actually a set of books) I read it thoroughly and her words sank deep.
If narcolepsy is a rare disease, Kleine-Levin is a rare disease that affects young boys, even in its most capricious found in adults, women and elderly. There is no known specific cause of this condition, it is thought that in most cases up to around thirty years, is treated with lithium and modafinil, I hardly suffer Kleine-Levin.
I still have a lot of the influence of old bearded: listen to music by Silvio Rodriguez, use shirts with the silhouette of his compatriot that the red star beret, the insane guerrilla killed in Bolivia, I let my hair grow and my beard for weeks I think this world can be better (without the help of the Americans), and it breaks my heart when their bellies empty B56 on the city of a thousand and one nights (the phrase is Ismael Serrano).
Tanis Burnett is Kleine-Levin and looks like you in many ways. Tanis is a young Canadian with a rare sleeping sickness, has great technical interest in the details of your condition and also runs a forum to help people with the disease, you may already have heard of it. In contrast, the Tanis Forum is sponsored by the KLS Foundation, Tanis and the hear say things like: "When I am in a episode I receives help from the social welfare state Programmes of Canada." Well, Tanis live in other kind of country.
Anyway, I think it's a good idea to make direct contact with Tanis Burnett, all information necessary to achieving this is http://klsfoundation.org/ , the only issue is who should be in English. If you know speak or write in English only, for nothing, if not, then I see the problem as much as they have in common and much we have to share. I also think that Tanis is a small step forward and, from his experience, could greatly help tengonarcolepsia.com.ar which is what interests us.
But beyond that, I'm sure you can Tanis and become very good friends and, perhaps, in the future, each taking a trip of half a continent to meet, perhaps in Panama.
I'm still progrouchiana Marxist current.
Sleeping beauty.
18th May 2010 at 20:20
I have a presumptive diagnosis of narcolepsy, take modafinil for 10meses + - and made me less effect than aspirin, reason why stop treatment and visit Dr. The question is this, that I have done, there is a treatment that I allow at least have 8 waking hours in the day? from which you will find someone tired to sleep, without rest. from already thank you very much
May 19th 2010 at 23:26
Ramiro, you can have 8 hours of wakefulness, that is adjusting schedules, not always the time that you take modafinil is appropriate. You should see how are your routines in the day to know if you should take it and / or add something that makes you relax at night with depth, ie, real rest. See if you can not reconsider the issue. And the other thing you ask, there are alternative therapies that work, what it all depends what happens to you and if who knows waaaay indicated. If you confirm the diagnosis, it might be ideal to know if there is nothing within the hypersomnia. And that subject to appropriate professionals.
As ... naps are necessary!
Good luck and kept us in the forum ...
Sleeping Beauty
August 17th 2010 at 9:24
look at all the guys that are here I'm from Argentina and I want to tell everyone that there is a great and mighty God that can heal it and get all the bad things are, AMI ME I WAS TOTALLY HEALED EPILEPSY years and traveled years by all sides until my mother took me to church which I never wanted to go only to conform my mother was, well if I can not algunoleyo this seguircontandoporque lesdejo'm working my mail,, ivan1_nos @ hotmail