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Does Anyone Else Have Other Autoimmune Problems Besides Narcolepsy?

Narcolepsy Coping Autoimmune Disorders

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#1 e.lena

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Posted 28 May 2013 - 08:15 PM

I have had severe allergies all my life, became symptomatic with Narcolepsy around age 10 after suffering from cytomegalovirus (my Dad worked in a hospital). I missed 20 days in 6th grade due to Epstein Barr and 4 months of my Sophomore year in High School due to a Mono-Like Virus. It took me 10 years just to get my Associates Degree because I had to drop classes due to pneumonia, bronchitis, flu, colds, swine flu, etc. I wasn't diagnosed with Narcolepsy with Cataplexy until age 26, so you can imagine my relief after 16 years of not knowing what was wrong with me. I called cataplexy "the wave of weirdness" because I had no idea what it was. I have weird bouts of inflammation, chronic hives, for which I have to take a daily antihistamine. My tendons started easily damaging and tearing in 2006 (age 26)requiring hand surgery twice to remove part of a tendon that was too damaged to heal just from walking with patients using a gait belt, terrible triad injury to my right knee just from stepping off a small step ladder, now navicular bone fracture, torn posterior tibial tendon tear, and peroneal tendonitis of my right foot, just from walking. I am not overweight, eat extremely healthy foods (no processed foods, only organic, due to allergies and intolerance), and exercise regularly. The only thing I do too much of is work, but that's how I pay for all my medical bills. I have never met anyone else who has remotely the same issues as me. I even had atypical pityriusis rosea after being stung by a scorpion. It is extremely isolating to have this many health problems and never get any answers or treatments that work. I look really healthy on the outside, but there's an angry old woman trying to cripple me from the inside. It seems like I'm falling apart at a faster rate each year, no matter how well I take care of myself. If anyone else has crazy autoimmune issues, please tell me how you are coping. I need some inspiration before I scream (which might cause another tendon to tear).

#2 Mmartens3

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Posted 28 May 2013 - 10:38 PM

I have hashimotos thyroiditis. I also have allergies. I am having digestive issues that may be autoimmune related. I am attempting a grain free, dairy free diet. I am not very consistent. I have chronic headaches, back pain and neck pain. I don't know if those are autoimmune. My issues don't seem to be as unique as yours are. I kinda know how you feel though. I feel like I am falling apart. My inspiration is hope that the next day will be a better day and being thankful for the good things in my life. As a Christian I have faith that God will carry me through this. Also my children and husband inspire me to press on.

#3 DeathRabbit

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Posted 29 May 2013 - 09:30 AM

Epstein-Barr has been indicated as a trigger for MS, just an fyi. So it makes sense that it was probably the cause. Also, I had the swine flu as well. That's when my symptoms got a lot worse. It went from just EDS, to EDS with terrible brain fog and a host of other problems. It's like I never really recovered from the swine flu.



#4 e.lena

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Posted 29 May 2013 - 08:59 PM

Interesting about the digestive issues, as I am trying completely wheat free, zero processed sugars, and mostly dairy free (except Chobani yogurt). I am allergic to wheat so I really should have been eating gluten free since diagnosed at age 9. I started having horrible episodes of possible diverticulitis 3 years ago, and one subsequent episode each year after. Wheat was a trigger for each episode and even caused stomach polyps and redness due to the irritation of the allergen. Xyrem has majorly exacerbated my digestive issues, probably because my usual diet consisted of maybe 500 mg of sodium at most. I had my "diverticulitis" episode for 12 days once I started the 9 gram dosage of Xyrem. One thing that helps me immensely is eating 1 cup of frozen wild blueberries (nature's #1 antioxidant fruit) with a serving of plain Chobani greek yogurt, 1/4 cup of gluten free granola, 1/4 cup of natural almonds every morning before taking all my meds. I could even tolerate the wild blueberries during my "diverticulitis" episode. I applaud any narcoleptic with children. It must be extremely difficult to care for them due to all of the issues that accompany narcolepsy. I decided even before my diagnosis at age 26, that I was not going to have children. Before starting Xyrem, I would sleep anywhere from 12-24 hours straight, no dreams, no waking up for fire alarms, nothing. From age 13 (1993) until January 2013 (started Xyrem),I would sometimes sleep for multiple days before waking up, always with confusion and memory loss.

As for the swine flu, I had it August 2009 after I had completed the first year of the accelerated 2 year RN program. I had to take the second year off to recover. I started my second year in Sept. 2010, made it through fall semester with a lot of struggles with the tests because a lot of the questions were completely foreign to me. The entrance exam for the 5th and final semester had about 10 questions that I had literally never seen before (I never missed class, attended all extra labs, studied in groups and alone, etc.) I had no idea what was wrong with me. My memory was continuing to diminish, I was dropping things (I broke a glass on my face when just trying to take a sip of water), falling a lot, ending up in the ER (once with a hamstring laceration obtained while sleep walking, dropping a glass on the floor, falling and impaling my leg on it). I had been working in the PT and nursing departments of an inpatient rehab hospital for 8 years (stroke, brain injury, spinal cord injury, and orthopedic patients) and I felt my symptoms were too unpredictable so I transferred to the desk job I have now. I couldn't bear the thought of dropping a patient during gait training or mid transfer. I didn't realize until this year that I was obviously going into REM while awake, and was missing key points of the lectures. I had thought all along that I was fine as long as I stayed awake, but I was definitely wrong. I think I'll do a little more research on swine flu as I didn't make the connection between the worsening of my condition until now. I take a lot of supplements to boost my immune system, but it's really expensive to keep up this regimen. Maybe scientists will figure out a way to ward off these super viruses before us narcoleptics become completely incapacitated.

Thank you both for your responses. It is always great to hear other perspectives and note similar experiences. I feel like a couple more pieces were added to the puzzle.

#5 DeathRabbit

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Posted 29 May 2013 - 11:45 PM

I just wonder if every time our immune systems scrambled all fighters there was some friendly fire, and the swine flu was just one blow back too many for me.



#6 iturnedintoamartian

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Posted 09 June 2013 - 10:05 PM

My issues also got worse after an illness. At 17, I kept going to my pediatrician for being sick. First, it was upper respiratory infection. Amox 500. Then sinus infection. Amox 500. Then upper respiratory again. AMOX 500!!! My mom insisted I switch to a regular physician. They immediately did blood work and I was informed that I had been suffering from walking pneumonia... for 7 months. Was never quite right after that.
I ALSO HAVE CHRONIC HIVES!!! I have never met someone with that! Mine are considered cholinergic. I have had them for maybe 5 years. I have ulcerative colitis and, weirdly enough, diverticula, though they don't know why. You know, seeing as I am not 80 years old. Besides that, I have Sjogren's Syndrome. I have accessory naviculars that are painful. During the time I started getting hives, my hands, particularly around my thumbs, started swelling. It even feels like a small mass. But they never found anything. I have a benign arrhythmia. I went through a few weeks once where I passed out, woke up green and covered in hives, my feet were turning blue, I had tachycardia and was in constant hyperventilation. I even had a seizure. They tested me for heart attack, stroke. Came back with nothing. They upped my antihistamine and insinuated I was making up the rest, told me I would have to wait for more symptoms. Eventually, most of them dissipated.
How have I learned to cope? I stopped going to the doctor. I stopped talking to people about it. I pushed it out of my brain. I stopped researching. I wouldn't suggest these things. It's just my experience. I gave up on finding an answer.

e.lena- Question. I don't know if your name is e.lena or Elena, but, if it is Elena, are you Greek? I ask because that's a very typical Greek name and our heritage could be another common factor (my great grandfather was from Mykonos and I somehow got all of the Greek physical characteristics, it seems ).

#7 sk8aplexy

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Posted 09 June 2013 - 11:17 PM

Can very much relate with this post.  I've considered posting something in the same regards, specifically about other autoimmune matters and allergies.  Am not one to go to doctors often, especially after around 4 to 5 years of what seemed like never ending engagements with them, resulting in 3 surgeries allergy-sinues-ear-nose-throat related and the long ordeal of 5 sleep studies-3 breathing machines and severe escalation of Cataplexy directly relating to such. 

Have a history of headaches and migraines which can be severely debilitating, ear infections and tooth matters, not to forget having had severe hyperinsulinemia hypoglycemia as an infant which required 90%+ of my pancreas to be removed at 4 months old.  Having grown so used to health matters through childhood, which for the most part (besides the pancreas) seemed 'normal' it was only in my 20's that it all really became obviously 'not normal at all'  (does any such thing as a 'normal' actually exist?).  The 'normals' and 'guidelines' around test/s results, is something I'll never grasp or feel comfortable with; I feel there's been a lot of 'pass-offs' or 'over-looking' in my case and I assume such is very common (I'm willing to admit I could be entirely wrong). 

At 28 learning about Narcolepsy with Cataplexy, many things became more apparent.  One of them is that so many diagnosis seem to be only a mesh of symptoms and there's quite a disturbing (in my opinion) manner of narrow/short sighted-ness, or maybe I should say quick glancing of symptoms, rather than an overall thorough comprehension of one's matters.  I'm probably venting at this point, and entirely off of the post topic.  Maybe I've just been unlucky in the medical path I've been down, in cerain respects.  I've done a lot more on my own, going down the natural path; eating organic, cooking what I eat, avoiding processed/refined foods/sugars/juices, stretching/meditating, walking and trying to have some understanding (even though at times it feels like that just creates more unknowns..).  Being allergic to all sorts of things forces one to have to find means of adjusting, I've wondered about how the autoimmune system relates to allergies oncoming/beginning/forthcoming upon one, as for so many years I had no idea to them nor the Narcolepsy.

 

Two interesting articles I came across today are linked below, they seem to relate to the topic (to some extent)...

--"Narcolepsy Tied to Many More Illnesses"  [June 6, 2013]:

http://www.medpageto...LEEPNeuro/39665

--"Narcolepsy study finds surprising increase in neurons that produce histamine" [June 2, 2013]:

http://www.eurekaler...s-nsf060213.php



#8 ApparentlyNarcoleptic

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Posted 25 June 2013 - 06:03 PM

I can't tell you what a relief it is to read this!  I have been having various problems for many years.  I recently (just over a month ago) found out that I am apparently narcoleptic and finally feel like I'M NOT CRAZY!  I had made my own rationalizations for things that have been happening to me, like sleep paralysis, or just kept it to myself and assumed I must be nuts.  I don't think I've slept well since elementary school, and finally found out I'm narcoleptic at age 30.  I still sometimes don't believe it, and other times I'm sort of relieved.  I too have had chronic hives for years (and I've also NEVER met anyone else who has this problem!), strange allergies, past bloodwork has indicated that I had mono (though I never knew) and epstein-barr, musculoskeletal problems, a history of GI issues, IBS, raynauds syndrome, a heart murmur, chronic upper respiratory infections and the list goes on.  Last year I finally got sick of being sick and in pain and began to add more doctors to my never-ending list.  We found out that I have nerves being pinched in my neck and low back (causing pain in my right shoulder and arm, as well as down both my legs) and congenital spinal stenosis for which I have so far received radiofrequency heat ablation (they killed nerves in my back) and an epidural.  I've had more endoscopies than most people get in their life!  I've had sinus surgery which did fix some stuff, but it didn't fix the chronic upper respiratory infections.  Additionally, I was sent from the ENT to a specialist to an immunologist - who I saw just after receiving the narcolepsy diagnosis.  She sent me for a battery of tests, all which came back fine (though my thyroid level was suddenly a little high, and it was fine during previous bloodwork).  My PCP and sleep doctor believe that my narcolepsy may be a contributor to my chronic upper respiratory infections and difficulty recovering from them (my rotation of antibiotics include biaxin, levaquin, and avelox).  I see doctors more than I see my family or friends!  I too believe I am going into REM while awake.  All this time I just assumed I had a terrible memory.  Now I know better.

 

I completely sympathize with you!  I too want to scream and rip my hair out, but I'd probably just find out that it activated something dormant in my system and won't grow back!  I'm TIRED of doctors appointments.  I'm TIRED of lab bills.  I'm TIRED of adding new specialists to an ever growing list of doctors who have nothing new to offer me and continue to charge me for no solutions.  I'm TIRED of being full of medication.  And thanks to the narcolepsy, I'm TIRED of being TIRED!  I've been joking for years that there is an old woman inside my body.  I'M ONLY 30!  Even doctors say that I appear to be a healthy young woman, but when written on paper I am very messed up!

 

I wish I had words of wisdom to impart.  If you come up with any, please share!  All I can say is, YOU'RE NOT ALONE.  For right now I take some comfort in knowing that some of me can be explained by narcolepsy.  I don't know how long it will last though since it doesn't explain everything.  I feel like I need my own personal "Dr. House" to figure it all out!



#9 Anabiscuit

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Posted 19 August 2013 - 05:21 PM

First post here (hi!). I was just diagnosed last week. Still in a bit (a lot) of shock.

 

I also have had a lot of struggles with severe allergies-- I've been on antihistamines for as long as I can remember, and I spent a large part of last year battling with awful daily allergic skin reactions to what I concluded was something in the air of my office building. During that time I got a bunch of blood tests done that revealed an immune system imbalance: IgE antibody count was 1700 (normally should be ~100). Reading the studies about the link between N and histamine levels, wondering if my hyper-allergic state isn't related.

 

My family also has a history of autoimmune disorders: arthritis, MS, Psoriasis. I'm just one of the gang now, I guess. :(



#10 Beckylaine

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Posted 19 August 2013 - 08:19 PM

Although no "official" N diagnosis yet, I have had severe sinus & allergy problems my entire life. In 3rd grade I missed over a month of school before being diagnosed with staph in my sinuses which required surgery. In south Louisiana most ppl suffer from allergies. I always thought I had a relatively strong immune system aside from that. I worked in intensive care as an RN for 3 years, & during that time I took care if ppl with swine flu or H1N1 virus, West Nile virus, etc. My dad does have MS and my aunt & cousin suffer from rare autoimmune/neurological conditions. I have slept excessively since I was an adolescent & I fell asleep behind the wheel for the first time at 18( now 31). I am otherwise health luckily. I have a 4 year old, work full time, & I'm currently working on my bachelor's degree. Unfortunately when I'm not working or doing school work I'm sleeping. I feel I've missed so much of my sons life to sleeping. I'm very thankful my husband is so supportive. Glad to know I'm not the only one. I sure feel like no one else understands what I'm going through.

#11 IdiopathicHypersomniac

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Posted 19 August 2013 - 09:53 PM

I had allergies.  My symptoms got worse after H1N1 was going around.  Never got the shot or the flu though.







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