Narcolepsy and disability

Common Questions and Answers about Narcolepsy and disability


to have such strange and dramatic symptoms, because I think it bought me my one-way ticket to disability land. I also didn't manage to even maintain part-time work for long. I struggled along at 10 hours or so per week for all of I think... 2 weeks was it? Something like that.
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".
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 am helping my friend with his disability claim. He has PTSD also and is not able to discuss the Narolepsy with doctors or me or anyone. How can I show the severity of his Narcolepsy. He goes out of way to look normal everytime he has an evaluation for mental stability. He has sleep Apnea #12 CPAP nightly. He is not able to tolerate the Narcolepsy medication. throat clossed, tongue swale, stomach blew up, stayed in toilet. Can some tell me what to claim and how to show the severity?
I was off work for over 8 months with the spinal fusion and didnt need to stay awake, so I was not taking my meds for my narcolepsy. I am now back to work on a 4 hour a day basis and I CANT FUNCTION hardly at all. I can not concentrate to learn the changes, I cant remember most of my job, I am forgetful, I feel like my brain is being overloaded and because I am SO SLEEPY its all I can do to stay awake. The same meds that I was taking dont seem to do anything anymore.
Basically, my left side (face, arm trunk, thigh and down the leg) is numb and needle(ish). I cannot feel heat or pain immediately and have to watch the shower and wear shoes at all times. But I adjusted and learned to live with it. Unfortunately, it worsened every winter and I would enter spring with a bonus disability (swelling, rash, cold intolerance). My first neurologist (due to insurance, I have had 8) advised me to take up tennis in 1999, as I am left handed, to slow the progression.
drug. So then it was off everything and I couldn't function and started the paperwork for disability. So in conjuction with my doctor and with the pharmacy help line for Provigil it was determined that for me it would be ok to cut the 200mg pill into smaller pieces. (Note - this is an option for me - don't try this without your doctors ok.) We found that my heart could tolerate a 50mg dose. (Provigil only comes in 100mg and 200 mg pills). That worked good for about 9 months.
0 or thereabouts and great free t4 free t3 levels and all else looks good so maybe they raise your thyroid med dose thinking you're still a little hypo (not hyper) or have you lower dose in case you are actually hyper and for a short while you feel better or feel worse right away so now you don't know if you're up or down ?
Fatigue was on of the main reasons for going on disability, and of course with my mobility problems. You are so right that people don't understand that MS fatigue is so much more intense a all consuming than just being tired. It's really pathetic that your near doesn't understand this or know anything about the meeds used to combat fatigue. If it is at all possible, I would try and find a new near (who won't ***** you !) Hugs to you!
They changed some over the years, but my final diagnoses that made sense to me and stuck with (I keep myself very informed on things, my brother had bp and committed suicide, and my dad was also sick and overdosed on seconals but lived with brain damage) But here is the list: Schizoaffective disorder (bipolar type..
that I had seen for years and years...She knew me inside and out...saw my moods...really really talked to me..I miss that. I'm frustrated.... Wish me luck.......
My son, age 41, has severe narcolepsy. He is on disability because of it. He takes Ritalin for the narcolepsy and clomipramine (generic for Anafranil) for the cataplexy. The Ritalin helps, but he can only take 3 pills a day (insurance won't approve more), and he really needs at least 2 more a day to stay awake and function. He has bad nightmares and yells out in his sleep when he does not have the clomipramine.
No sleep apnea, but tech said she's done a 1000 sleep latency tests and never had anyone fall asleep during all 5 nap times, fall asleep so quickly and dream too. She mentioned narcolepsy and hypersomnilance. Sometimes I Amos tired in the morning that I can't open my eyes or move. What is going on? I'm very frightened. And, I just got diagnosed 2 days ago with bad laryngopharyngeal reflux. Any thoughts are appreciated.
A couple weeks later I was very fatigued and feeling very exhausted. I have a swollen neck and gland neck pain, as well as behind my knees and grone. My doctor gives me 2cc B12 once a week. My throat seems to swell up under stress and go up and down frequently. I am in sales and was recently located to a territory 1 1/2, at least, miles from home, which is where my office is. I drive in constant traffic and semi-truck traffic and accidents all day long.
I have gone off my Lyrica to see if I can control my pain with diet/exercise/massage/IMS and Osteopath. I have gained so much wt and I know it can't be helping with my pain. I can't say for sure if the weight gain is from the Lyrica or one of the other meds I'm on but I have to try something. So this is day 1 with no Lyrica. I didn't sleep last night..was up until 3 am,*****.
I also have sleep apnea..narcolepsy, and sjorgrens. I go this Friday to see another sleep specialist to see what can be done about me not going into stages 4 or5 {REM} and I am sure that is why I am so tired all the time. No-one seems to understand...and frankly ...neither do I !! I`ve tried the CPAP machine and 4 or5 in my sleep. So this is (not the short ) ..or the long of my journey...and like so many of you ...I dont need to explain it all !!! " BETTER DAYS TO US ALL...
I also have sleep apnea..narcolepsy, and sjorgrens. I go this Friday to see another sleep specialist to see what can be done about me not going into stages 4 or5 {REM} and I am sure that is why I am so tired all the time. No-one seems to understand...and frankly ...neither do I !! I`ve tried the CPAP machine and 4 or5 in my sleep. So this is (not the short ) ..or the long of my journey...and like so many of you ...I dont need to explain it all !!! " BETTER DAYS TO US ALL...
Habitual snoring and gasping for breath during night is a usually earliest sign with excessive daytime sleepiness, fatigue, feeling unrefreshed, night sweats, morning dry mouth or sore throat and headaches. There may be a family history. Overweight, an overbite, a recessed chin, and a structurally abnormal airway, smoking, alcohol and sleeping pills can be some causes. Losing weight is one of the best things to do, avoid alcohol, smoking and sleeping on to your back.
get him tested for sleep apnea and if he doesn't have that get him tested for narcolepsy. narcolepsy in real life isnt always as dramatic and obvious as it is in the movies. adults with narcolepsy, as children their symptoms very closely resemble add.
I am 56 years old and have been diagnosed with shingles. I am on disability for numerous conditions including fibromaylgia, MS?, B12 deficiency, narcolepsy, many food and environmental allergies. and depression/anxiety. I have had numerous surgeries from the serious (ruptured appendix and passing gall stones) to less serious (2 arthroscopic surgeries). I have had a precancerous beast biopsy, and precancerous colon polyp.
my life consists of taking pills, undergoing medical tests and procedures trying to find the root of the problems, recently its been nausea and vomiting for 18 months. Additionally, I have been diagnosed with Interstitial cystitis and it's about as painful as anything I've ever had..i haven't had much luck with taking the Elmiron or the urised, but I do use it and I suppose it's better than nothing. I also have some kind of severe itching only on my shoulders and forearms..
I have a very complicated medical history that includes a diagnosis of MS, B12 deficiency (intrinsic factor), fibromyalgia, chronic pain and fatigue, narcolepsy. I am very allergic. The MS is questionable. It was diagnosed about 20 years ago - 2 negative spinal taps, no progression of symptoms - based pretty much on symptons at the time and 2 areas of plaque on brain.
Does any suffer from a pineal cyst? Awful skull pain, headaches and dizzy. Please let me know.
-Generalized Dysautonomia -Narcolepsy with Cataplexy -Gastroparesis and Intestinal Dysmotility -Chronic Hypovolemia -Traumatic Brain Injury (with memory impairment) -Clinical diagnosis of Mitochondrial Disease -Myofascial Pain Syndrome and Visceral Hyperalgesia I'm a "tubie," which is to say I rely on a feeding pump and a feeding tube for my nutrition.
It was a natural wood embedded with crystals and had some leather fringe and a crystal handle. She had made it herself and I thought it very unique and decorative as well as functional. I have also seen wheelchairs plastered with stickers. I love the artistic flair! Again I think we need to create a whole fashion line! Heiferly, thanks for the link!
This is particularly useful if you work and eventually need to file for disability. Relax and do the testing - it really is a good thing.
will say it's medically necessary, then I can use it as a medical expense, ask for an interim review, and get my rent lowered. I could call my disability worker, fax her the medically necessary paper, and get an increase in food stamps. It really has made that much difference. If I wouldn't have had 100 mg. today, there is no way I could have driven to my 8:15 am appt.
Doctor just railroaded over top consultants letters and conculded all was psychological. Even the sleep study. I had a narcolepsy test where evey two hours in the day I had to go to sleep in the day. She didn't get it. She concluded, not realising this was a TEST, that as I spent so much of the day asleep I that was the reason I couldn't sleep at night, even though the day test was after the night one. A woman of science, clearly.
it's not that my dysauto docs aren't *aware* of the narcolepsy with cataplexy, but because it's outside of their specialty and not their focus, it's off their radar most of the time. I don't think they really consider the fact that there are people who are on disability for their entire lives for "just" the narcolepsy. Add dysautonomia to the mix and ... well, it didn't take me terribly long to figure out that I wasn't holding out for a "magic bullet.
but people with fybromyalgia get disability and that isnt anythng but unexplained pain with a name. it pisses me off. have u had surgery? is chiari your only diagnoses?
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