Jump to content


Photo

Calling all new users


  • Please log in to reply
236 replies to this topic

#21 Libby

Libby

    Member

  • Members
  • 7 posts
  • Location:Ohio

Posted 17 April 2008 - 05:51 AM

Hi,
I'm very new to this my son is 15 and was just it was just discovered that he has Narcolepsy.
He has been failing at school and the teachers email me weekly to tell me he is falling asleep in class.
He went to a sleep lab this weekend and thats when they discovered it. I knew something was up so I took him to the Dr. and she tested for everything encluding diabities to anemia, but all the test came back clear. The Dr. then said it was time for a sleep lab.
Let me tell you, the mornings in this house are rough, I have to start 1 half hour before he needs to get up just to get him to get up. Then the begging starts about wanting to stay home because he's just to tired to go or to do his work. So I just encourage him that it will be ok and please just go and try to get through the day. I have an appointment this week for him to see a specialist for his medication, crossing fingers here that it helps school and the attitude and most of all his well being.
I'm sorry if I'm not the one you need to talk to but I sure need you, This whole thing hurts so bad and I need some support.Thank you for listening.

#22 Cryopathic

Cryopathic

    Member

  • Members
  • 121 posts
  • Location:Ermmm...Earth?
  • Interests:I like Drama , Art , Sleeping , Biology and Tae Kwon Do.

Posted 17 April 2008 - 06:20 AM

Hi Libby I know exactly how your son feels. I was like that in the mornings, You would hear me shout "10 more minutes mum!" I also didn't want to go to school in case I fell asleep in P.E or something. Don't worry Libby, Your not alone. smile.gif

#23 Lovemyhusband

Lovemyhusband

    Member

  • Members
  • 175 posts
  • Location:Scotia, New York
  • Interests:I love to read, spend time with my family and will always say yes to a trip to an amusement park!

Posted 18 April 2008 - 07:10 AM

QUOTE (Libby @ Apr 17 2008, 10:51 AM) <{POST_SNAPBACK}>
Hi,
I'm very new to this my son is 15 and was just it was just discovered that he has Narcolepsy.
He has been failing at school and the teachers email me weekly to tell me he is falling asleep in class.
He went to a sleep lab this weekend and thats when they discovered it. I knew something was up so I took him to the Dr. and she tested for everything encluding diabities to anemia, but all the test came back clear. The Dr. then said it was time for a sleep lab.
Let me tell you, the mornings in this house are rough, I have to start 1 half hour before he needs to get up just to get him to get up. Then the begging starts about wanting to stay home because he's just to tired to go or to do his work. So I just encourage him that it will be ok and please just go and try to get through the day. I have an appointment this week for him to see a specialist for his medication, crossing fingers here that it helps school and the attitude and most of all his well being.
I'm sorry if I'm not the one you need to talk to but I sure need you, This whole thing hurts so bad and I need some support.Thank you for listening.


((hugs to you))

Libby I am so glad you stopped by. Thank you so much for sharing what you are going through.

I hear you loud and clear on the starting an hour ahead of time to get your son out of bed. Thats the way it was for my husband before he started on provigil. We are slowly getting back to that point, I think the provigil was a very short term helper for him. I need to talk with the dr about an increase in dosage or change in meds, sounds like fun doesn't it huh.gif .

Don't think that you are any different in the needing "to talk" department than I am, we are all in this together. One thing I will ask is do you encourage your son to see the bright side of things? I know it sounds crazy but if the only negative is the symptoms of N than he should be feeling pretty good about himself. As you get to know me you will find I am an eternally optimistic person biggrin.gif (drive my husband nuts somedays). I hope to chat with you again soon.

#24 Shambo

Shambo

    Member

  • Members
  • 17 posts
  • Location:Woodland Hills , CA

Posted 20 April 2008 - 12:22 AM

Hi my name is Shannan. I am 21. I was FINALLY diagnosed last April. I started having sysmptoms , EDS, when I was towards the end of high school (15). I had seen a few different family medicine doctors. One treated me with Prozac for a year but that did nothing. I was diagnosed with ADD when I was 6 and took Ritalin. My parents have been divorced since I was 2 and in another battle only for the sole reason of winning my father made me stop taking Ritalin when I was 12.

I went to see a psychiatrist when I was 16 ( after the year or Prozac) to start on Ritalin again. He also took my symptoms of being tired and sleepy and napping as a sign of depression. I started doing better in school with the Concerta but no change with the depression medication. He thought that my birth control , Depo Provera, was causing depression. He took me off birth control completly and put me on another anti depressant. After about a year he realized the depression meds weren't doing anything. He had given me Provigil once, but it was while I was taking Wellbutrin and it made me horrible sickly feeling all day. He tried a few different pills, none of which did anything and none of which I can remember the names. He finally gave me a referral to a sleep specialist and I got my sleep study when I was 20.

The Concerta has done nothing for the EDS. I am now worried that I may not even have ADD. I have read that many people with N are diagnosed with ADD because their school work is suffering etc. We'll see. I started taking Xyrem. It kinda worked. I find that I have too many side effects though. It seems to make me more tired the first few days I take it and then I start to feel better. This is problematic since I Babysit over the weekend sometimes. Stopping and starting all the time was wearing me out. I had taken a break from it for all of November and December with the holidays and vacations and such. I started again in January and had a horrible reaction. I started to get very emotional and freaked out when I would take it. If I didn't fall asleep within 5 minutes of takingit I would be up for at least 2 hours in this drugged up freaking out state. It really scared my live-in boyfriend.

I have worked part time on and off and been in college. I never seem to be able to finish more that 3 classes a semester and could never work much. I graduated high school early at 16 but have slipped behind and am now in a mad rush to graduate with my BA before I turn 23 and get kicked off my mom's insurance. I quit my job about a month ago but unfortunatly just in time with that I have been getting worse and worse and worse since February. I though it would give me the chance to have enough energy for full time school but not so much.

I now realize I just wrote a short novel. Sorry guys......

So glad to find this place.

#25 greatbig47

greatbig47

    www.newrolemodels.com

  • Members
  • 553 posts
  • Gender:Male
  • Location:Greenville, Michigan

Posted 20 April 2008 - 02:50 AM

QUOTE (Shambo @ Apr 20 2008, 12:22 AM) <{POST_SNAPBACK}>
I now realize I just wrote a short novel. Sorry guys......

So glad to find this place.


This place is glad to find you!
Your among a group where everyone has a novel in them.
It's all good! Write on!

-Stu

#26 Sam.Toombs

Sam.Toombs

    Member

  • Members
  • 30 posts
  • Location:Sheffield, England
  • Interests:I am currently studying International Criminology at Sheffield University here in the UK and however dull that may sound i actually do enjoy it.<br /><br />I was diagnosed with Narcolepsy/Cataplexy when i was about 19 and i do appreciate the friendships across the globe that this has brought me.<br /><br /><br /><br />

Posted 20 April 2008 - 06:21 AM




Hi, my name is Sam and I am from Sheffield, England. I was diagnosed with Narcolepsy/Cataplexy about 6 years ago when I was about 17, here is a ‘little’ about myself. I was asked to write it for a documentary on Narcolepsy that I am taking part in (along with Cryopathic and 1 other) Anyway – I thought it fit so here it is:

If you asked them, I suppose my parents would tell you that I was a sleepy child. I suppose, in a way, it was a godsend in a house with 2 other small children. It seemed normal to me that I slept as much as I did and as I grew older I didn’t see it as unusual that I slept more than my friends, but then again why would I? Sleeping was easy and I always seemed to need it anyway so I guessed that it couldn’t possibly harm.

And that was how my life was I suppose, I slept more than most but thought nothing of it, but my need for sleep increased as I got older. I had started a new college after my G.C.S.E.’s and so I assumed that the stress and excitement of that was just having its toll. I did eventually start to wonder if I was ok when my friends would joke about how often I fell asleep at lunch time or how my teachers came and woke me up in time for lessons.

I remember one friend teased that I might have Narcolepsy with the amount of time I spent asleep but that was such a rare disorder that there was no way that I would have it – what were the chances that something like that would happen to me? Anyway I had my life planned out, so I didn’t have time to have disorders or illnesses.

Although I always appeared fairly laid back about sorting my future out, I did have plans. It began by taking everything one step at a time and the first step was to get good A-Level results. If I’d known that along with my results I would also experience my first cataplectic attack I suppose part of me might have avoided it, hoping that denial might be the best medicine.

It would not be an understatement to suggest that experiencing cataplexy for the first time was, for me, life altering. To not have control over your own body, for whatever length of time is bound to shock even the most stalwart of people. I just collapsed, there was no warning, no pain and no other sensation other lacking any form of control over myself. I had no idea how to deal with it the first time, and if I’m honest it still throws me off balance even now, 7 years later.

I wasn't willing to deal with it and so I kept my symptoms a secret as much as possible, I had no idea what was going on but I didn't want to admit that there was something wrong with me.

I slept more and more and I stopped going out, it wasn’t a conscious decision at first to retreat in such a way but I was so exhausted that I was left with no other option.

When I moved to University, the level of general stress increased and so too did my symptoms; so I decided it was time to admit the difficulties I had to my parents as well as my GP. It took a while to get diagnosed with narcolepsy and along the way I was faced with being told I was over weight, not exercising enough, the symptoms were a result of abuse, I was drug seeking or that I was just making it up, even now I have to fight to make sure that people don't make assumptions about my symptoms.

For me, the changes that this has brought to my life has altered me completely, the life I lead now is not what I had planned out for myself. I did expect to be able to hold down a full time job with no problem, I never expected to change my lifestyle to avoid emotions that might cause cataplectic attacks. All the plans that I might have had, however mundane they were, were eventually changed as I grew up and my narcolepsy manifested itself. For me, it is the small things that I get to me the most. I miss going out all day with friends and I hate the opportunities I have lost along the way, going out all night is just not an option for me, maybe I wouldn’t even enjoy it but the option to decide should have been mine! I really wish I could get into an argument – I realise how that sounds but sometimes you really need to express yourself and to not be given that opportunity because your body will give up on you is almost suffocating.

I suppose in a way this would not be so much of a problem if it was not for the reactions that I receive when people see me fall asleep or have a cataplectic attack. I hate the idea that people think I am disinterested because I yawn or fall asleep, I don’t like knowing that from the outside looking in my symptoms can sometimes scare people. When I’m collapsed on the floor and all I can see are my parents worrying for my safety knowing that there is nothing they can do about it, hurts more than any of the bumps and bruises I have received over the years.

I guess that all parents want their children to do well and to be healthy and happy … and I am … to an extent, I wish I could come up with something mildly philosophical to make my situation seem better but the only saving grace is that I have friends and family that understand and help to the best of their ability.

When I was growing up, I guess like most teenagers I wanted my independence and to mark myself out as an individual, and now all I want is to be like everyone else. My friends think that the opportunities that this documentary gives me are amazing, and I try hard not to snap at them. If they knew what this was like then there would be very few people arguing that anything made this worth while. I am being given this opportunity because I can not control my body when it needs to sleep; my body suffers from paralysis as a result of emotions or at times what can only be described as whimsy. My life is confined to short gaps between my overwhelming desire and need to sleep and only by filling myself full of drugs do I get close to some semblance of normality. I can’t manage to think straight due to chronic fatigue, my spare time seems confined to my bed and everything that I ever wanted from life has been changed because of something that I don’t deserve.





#27 Sam.Toombs

Sam.Toombs

    Member

  • Members
  • 30 posts
  • Location:Sheffield, England
  • Interests:I am currently studying International Criminology at Sheffield University here in the UK and however dull that may sound i actually do enjoy it.<br /><br />I was diagnosed with Narcolepsy/Cataplexy when i was about 19 and i do appreciate the friendships across the globe that this has brought me.<br /><br /><br /><br />

Posted 20 April 2008 - 06:21 AM

argh - that was much longer than even i thought it would be!!!

apologies!!

#28 Lovemyhusband

Lovemyhusband

    Member

  • Members
  • 175 posts
  • Location:Scotia, New York
  • Interests:I love to read, spend time with my family and will always say yes to a trip to an amusement park!

Posted 21 April 2008 - 05:26 PM

QUOTE (Shambo @ Apr 20 2008, 05:22 AM) <{POST_SNAPBACK}>
I now realize I just wrote a short novel. Sorry guys......

So glad to find this place.


It's nice to meet you Shannan.

I am very glad you took the time to share your novel with us tongue.gif . Keep us posted on getting your BA. Good Luck!

#29 Lovemyhusband

Lovemyhusband

    Member

  • Members
  • 175 posts
  • Location:Scotia, New York
  • Interests:I love to read, spend time with my family and will always say yes to a trip to an amusement park!

Posted 21 April 2008 - 05:38 PM

QUOTE (Sam.Toombs @ Apr 20 2008, 11:21 AM) <{POST_SNAPBACK}>



Hi, my name is Sam and I am from Sheffield, England. I was diagnosed with Narcolepsy/Cataplexy about 6 years ago when I was about 17, here is a ‘little’ about myself. I was asked to write it for a documentary on Narcolepsy that I am taking part in (along with Cryopathic and 1 other) Anyway – I thought it fit so here it is:


[/size][/font]


Hi Sam.

I wanted to say Thank You for being honest about your feelings. That in itself gives people like me (pwon) a glimpse of what it must be like for PWN. When I post I will try not to "step on your toes" but I am an optimistic person (one of my many flaws) so chances are I will say something you won't like.

I am glad that you and many other people who have N are willing to share you life with us so that we can better educate poeple on the subject matter. Just because I live with a pwn doesn't exempt me from the weak moments of disliking N. I hope you continue to share you opinion and feelings with me.



#30 cdm85

cdm85

    Member

  • Members
  • 3 posts
  • Location:Colorado

Posted 24 April 2008 - 12:19 AM

Hi everyone! my name is casie, i'm 23 yrs. old & just got diagnosed about 9 months ago. I had the normal symptoms for years (11) and after 2 car accidents my parents and i decided it was serious enough to look into. It's made all the difference for me knowing and that it's not somethin i have to be embarrassed about anymore!

It dawned on me today that there might be a website like this with people like me! it's so encouraging just knowing there are some people who know what it's like to live with this. Does anyone else wish we lived in mexico or somewhere else where they enforced siestas?! i feel like that would solve so many problems...! Hehe.

#31 Curiosity

Curiosity

    Member

  • Members
  • 7 posts

Posted 27 April 2008 - 02:19 AM

Hello everyone! I've been a member for awhile, and reading up, but haven't posted yet. (At least, not that I can remember...I'm crazy forgetful.)

I'm 27 and I was just diagnosed with narcolepsy 2 months ago, after 15+ years of sleep paralysis, auditory hallucinations, excessive daytime sleepiness, and hot flashes. Yes, it took that long for everyone to come to their senses and schedule me a sleep study.

I was on Adderall before I was even diagnosed. It worked wonderfully but it made my skin break out horribly, and on top of that all I wanted to eat was processed sugar, when normally I hate candy. I tried Provigil, and unfortunately even 400mg didn't work at ALL. Now I'm on Concerta which makes me sick to my stomach, albeit awake enough to experience feeling terrible. I haven't tried Xyrem yet, but I'm very concerned about the stories of binge eating.

I spend most of my days in bed, and I'm too sleepy to hold down a steady job. Relationships are super difficult too (at least from the standpoint that I can't get out much and meet people). I did graduate from college...it took me 7 years, but I graduated!

If I were forced to acknowledge an upside to this, it would be that sometimes I have really awesome dreams.

#32 sleepylama

sleepylama

    Member

  • Members
  • 33 posts

Posted 27 April 2008 - 10:39 PM

Hello everyone!

I just registered, however I must confess I have been lurking for 2 months. I was diagnosed w/N in February of this year after at least 7 years of specific symptoms and seeing multiple doctors (oh the stories there!). I will post my funniest story on the thread that asked for funny stories. =) When my Rheumatologist suggested the idea of Narcolepsy, after a full cataplectic attack in January, both my husband and I were shocked as we nodded in acknowledgement of every symptom possible. My sleep studies then confirmed the diagnosis.

I am in my mid-30s, have 2 young sons (9 and 5), and thankfully a very understanding husband.

I am on disability while we are trying to sort out how to treat me. My story is a bit complicated, as I also have Ankylosing Spondylitis (a rheumatoid disease in the family w/RA and Lupus) and Fibromyalgia. I also have a bunch of other diseases brought on by my "AS"--Anterior Uevitis, Peripheral Neuropathy, Hypoglycemia, Reynauds Phenomenon, Enthesitis, Asthma, Costochondritis, and IBS. ...So...you can imagine how delicate it is to add new meds to my already packed schedule. wink.gif I am also HLA-B27 positive, which is a genetic marker for AS, but from my studies and discussions w/my team of docs (Rheumatologist, Pulmonologist, Sleep Specialist), there is a N link to an HLA gene as well. They are not going to test me though because the genetic testing I already had for AS leaves them w/a very strong possibility for the N marker...and hey, we already know I have it, so no need to waste time/money.

I am on Provigil and will start Xyrem this weekend (when my hubby can keep an eye on how I am doing). I am not much of a fan of the Provigil yet, on 400mg, but I am going to give it 6 weeks until I see my doc. It isn't helping and I do not like the side effects.

Because I am fortunate to have good disability insurance, I do not currently have the work stresses that so many of you have posted about (see, I HAVE been lurking). I already had those issues w/my AS and was already on a plan w/FMLA, but the N symptoms just were a big problem, regardless of my 10+ year track record as a top performer. Thankfully, that is one less concern right now. Not that is makes anyone feel better, but on the forum for my AS, being able to work and disability is a HUGE topic w/a lawyer who answers non-case specific questions...unfortunatey it seems going on disability can be next to impossible regardless of the disability you have.

Seeing as I had already been living w/several chronic issues for years, w/this diagnosis, I have not really had any sadness or sense of loss of former self, I have already been through that grief process and moved on. My hubby and I, and my boys, are just learning to live w/Rip Van Winkle now. (bad joke, I know). My oldest son also has AS, unfortunately, but fortunately, we are a team at our house and even when we need a pity party for ourselves at times, each of us only allowed 10 minutes...then it is back to living! (well, or sleeping in my case, but you guys know.)

So, I fight my sleep when I need to, but my general routine is to sleep whenever my husband and kids are not home, or I am not exercising, but that is almost always w/them because we are an active family...I run and play soccer because that is good for a joint condition right...haha! I love to shop for shoes and vintage dresses and I LOVE to go out dancing. Unfortunately, Narcolepsy is not a fan of me going out dancing. I am very girlie and have been known to get a shower, take a nap, fix my hair, make-up and get dressed up, then go take a nap again w/out anywhere to go, just because I like to be girlie and you never know who might stop by...my hubby and kids call those days "sleeping beauty" days, cuz there I am sleeping in a dress and such. Hey, whatever keeps us going right? The kids are getting used to mommy needing naps and planning things more. I bet they have figured out how to get away w/all kinds of stuff while I am asleep!! laugh.gif

Before coming here I asked around on the AS forum (spondylitis.org) about anyone w/N; many people there have sleep disorders, but it seemed I was the only one to proclaim Narcolepsy!

I am looking forward to getting to know all of you here. I am greatful for my other forum for AS (spondylitis.org) and have already found this forum to be very positive and helpful! Sorry for the book, I am a super social person, N puts a damper on that a bit, but I just wanted to give you guys a little of who I am before I start asking questions and replying to posts. tongue.gif

Christina

#33 Lovemyhusband

Lovemyhusband

    Member

  • Members
  • 175 posts
  • Location:Scotia, New York
  • Interests:I love to read, spend time with my family and will always say yes to a trip to an amusement park!

Posted 28 April 2008 - 01:41 PM

QUOTE (cdm85 @ Apr 24 2008, 06:19 AM) <{POST_SNAPBACK}>
Hi everyone! my name is casie, i'm 23 yrs. old & just got diagnosed about 9 months ago. I had the normal symptoms for years (11) and after 2 car accidents my parents and i decided it was serious enough to look into. It's made all the difference for me knowing and that it's not somethin i have to be embarrassed about anymore!

It dawned on me today that there might be a website like this with people like me! it's so encouraging just knowing there are some people who know what it's like to live with this. Does anyone else wish we lived in mexico or somewhere else where they enforced siestas?! i feel like that would solve so many problems...! Hehe.


Hello Cassie.

Although I don't have N I would enjoy having a nap time so dh wouldn't be pressured about his occasional rolleyes.gif naps.

#34 Lovemyhusband

Lovemyhusband

    Member

  • Members
  • 175 posts
  • Location:Scotia, New York
  • Interests:I love to read, spend time with my family and will always say yes to a trip to an amusement park!

Posted 28 April 2008 - 01:46 PM

QUOTE (Curiosity @ Apr 27 2008, 08:19 AM) <{POST_SNAPBACK}>
If I were forced to acknowledge an upside to this, it would be that sometimes I have really awesome dreams.


Hello Curiosity.

I'm glad you decided to add to our boards. Lurking is helpful but I find interacting with everyone is more enjoyable than just lurking.

Andre (my husband) has some wild dreams. I often tell him I would kill to have such vivid dreams. Of course that sounds stupid to those with N who can't get away from the dreams but it would be nice to have just one good dream tongue.gif .

#35 Lovemyhusband

Lovemyhusband

    Member

  • Members
  • 175 posts
  • Location:Scotia, New York
  • Interests:I love to read, spend time with my family and will always say yes to a trip to an amusement park!

Posted 28 April 2008 - 01:56 PM

QUOTE (sleepylama @ Apr 28 2008, 04:39 AM) <{POST_SNAPBACK}>
Hello everyone!

I am on disability while we are trying to sort out how to treat me. My story is a bit complicated, as I also have Ankylosing Spondylitis (a rheumatoid disease in the family w/RA and Lupus) and Fibromyalgia. I also have a bunch of other diseases brought on by my "AS"--Anterior Uevitis, Peripheral Neuropathy, Hypoglycemia, Reynauds Phenomenon, Enthesitis, Asthma, Costochondritis, and IBS. ...So...you can imagine how delicate it is to add new meds to my already packed schedule. wink.gif I am also HLA-B27 positive, which is a genetic marker for AS, but from my studies and discussions w/my team of docs (Rheumatologist, Pulmonologist, Sleep Specialist), there is a N link to an HLA gene as well. They are not going to test me though because the genetic testing I already had for AS leaves them w/a very strong possibility for the N marker...and hey, we already know I have it, so no need to waste time/money.


Seeing as I had already been living w/several chronic issues for years, w/this diagnosis, I have not really had any sadness or sense of loss of former self, I have already been through that grief process and moved on. My hubby and I, and my boys, are just learning to live w/Rip Van Winkle now. (bad joke, I know). My oldest son also has AS, unfortunately, but fortunately, we are a team at our house and even when we need a pity party for ourselves at times, each of us only allowed 10 minutes...then it is back to living! (well, or sleeping in my case, but you guys know.)

Before coming here I asked around on the AS forum (spondylitis.org) about anyone w/N; many people there have sleep disorders, but it seemed I was the only one to proclaim Narcolepsy!

I am looking forward to getting to know all of you here. I am greatful for my other forum for AS (spondylitis.org) and have already found this forum to be very positive and helpful! Sorry for the book, I am a super social person, N puts a damper on that a bit, but I just wanted to give you guys a little of who I am before I start asking questions and replying to posts. tongue.gif

Christina


Hey Christina, you may be the missing link my family is looking for biggrin.gif .

My husband has N, his father and oldest brother have AS. Andre has had joint type pains but they won't look into the AS yet for him since he is not in as much pain. That I find a little annoying since you can check for the genetic marker with a simple blood test. My son has a lot of problems moving his hips. but they did not find the genetic marker for him so he is still a mystery.

I am really glad you found this site too. I look forward to asking you lots of questions tongue.gif about your experience with N and AS.




#36 sleepylama

sleepylama

    Member

  • Members
  • 33 posts

Posted 28 April 2008 - 02:32 PM

QUOTE (Lovemyhusband @ Apr 28 2008, 02:56 PM) <{POST_SNAPBACK}>
Hey Christina, you may be the missing link my family is looking for biggrin.gif .

My husband has N, his father and oldest brother have AS. Andre has had joint type pains but they won't look into the AS yet for him since he is not in as much pain. That I find a little annoying since you can check for the genetic marker with a simple blood test. My son has a lot of problems moving his hips. but they did not find the genetic marker for him so he is still a mystery.

I am really glad you found this site too. I look forward to asking you lots of questions tongue.gif about your experience with N and AS.


Hey Clara,
WOW! I completely relate to where you family is at. My first thought was that people have different thresholds for pain tolerance and it is scientifically documented that people who have chronic long term pain have lowered thresholds overtime, so it is possible that "not much pain" is really subjective and not necessarily a reason for a doc to pursue finding out the source of the pain. Does your husband see a Rheumatologist? If not, can he see one or see a new one if his will not test him? Also, I think it is worth it to take your son to see a Peds "Rheumy", as those of us w/AS call them. In my experience, both w/AS and as a member on the AS forum (which you can Lurk on just like this one...hehe), without treatment, those aches and pains stand a high likelihood to become spinal or other joint fusion. AS is still far more common in men (although underdiagnosed in women), but that is even more reason to get to a doc. Btw, HLA-B27 is the primary marker, but new research has found 2 new markers, although they are not ready for wide spread testing yet. Further, I know of families w/AS (or other spondy diseases) where some have the marker and some do not. My older son is positive and is presenting "typically" as males do. My younger son is negative, but he also has issues, just less severe. My boys see the same Rheumy and we are aggressive to stay on top of my older son. My younger son is more of a wait and see case, but he is seen every 3 months and has been treated as needed, mostly w/exercises we help him perform.

Also on your son (I am very passionate about keeping on top of my son and his health, so this one is really in my heart of hearts), agility and strength training work wonders for hip pain, whether it is caused by a rheumatoid condition or just regular usage. If he isn't really active, a physical therapist could start him off. If he is already active, he could train w/a trainer or just step up any existing programs he has. My son plays competitive soccer and he trains w/an agility trainer. The goal is to strengthen and lengthen the muscles that support his joints in order that the joints are less taxed, and that he is overall more limber and fit. They focus on range of motion type strengthening and core agility exercises. It has really helped! He also sleeps on a mattress w/a down pillow top and on a heating blanket to keep his hips and spine from tensing while he sleeps and to make sure he doesn't have negative pressure while he sleeps. He used to wake up every morning and need 30 minutes to stretch before getting up. Now he gets right up, unless he is in a flare.

Do either your husband or son have eye issues like iritis/uevitis? I ask because it was my VERY first symptom and my opthamologist said I should be seen about auto-immune diseases, that although it might not be anything, there is a strong causal relationship between iritis/uevitis and auto-immune diseases like AS/Lupus/RA/etc.

As you know through N, we are our best advocates for good health and positive treatment in partnership w/a doc....AND that sometimes it takes forever for the symptoms to progess enough for diagnosis or to get the right doc. With rheumatoid diseases, waiting for the right symptoms can often time be too late because some symptoms do not come until fusion begins and that is irreversible. Both my rheumy and our sons rheumy are very proactive with the goal of keeping fusion away forever if we can, or at least as long as possible. Plus, even in people w/out auto-immune arthritis or osteo-arthritis, range of joint motion is use it or lose it and where there is pain, we are all (mostly) less likely to use it and set ourselves back further.

Also, if you want to chat individually, please let me know. I have AS, my dad has Crohn's, my grandpa had Lupus, so auto-immune/rheumatoid diseases are something I stay on top of as much as possible. rolleyes.gif I had to stand out SOME how...I get to be the one w/Narcolepsy.

Christina

#37 uj9hdg

uj9hdg

    Member

  • Members
  • 4 posts
  • Location:Jacksonville, Fl
  • Interests:Jet Skiing, Saltwater Sport Fishing

Posted 28 April 2008 - 04:32 PM

Hi I'm Dustin I was diagnosed with Narcolepsy 4 years I'm 36 years old.

#38 greatbig47

greatbig47

    www.newrolemodels.com

  • Members
  • 553 posts
  • Gender:Male
  • Location:Greenville, Michigan

Posted 28 April 2008 - 06:38 PM

QUOTE (uj9hdg @ Apr 28 2008, 04:32 PM) <{POST_SNAPBACK}>
Hi I'm Dustin I was diagnosed with Narcolepsy 4 years I'm 36 years old.


Hi Dustin! I was diagnosed around the same age. Would have been nice to be diagnosed sooner, but I have to admit it made life interesting!

-Stu

#39 sleepytymegal

sleepytymegal

    Member

  • Members
  • 12 posts
  • Location:Middletown, Delaware
  • Interests:reading, decorative painting, travel, grandchildren, pet poodle

Posted 28 April 2008 - 07:40 PM



My name is Dianne. I am 69 (sorry Ann, guess I'm the senior!! I think I came into the world with N. I was a very sleepy baby (Mother thought I was just "good"), fell asleep everyday in 1st grade and quite regularly during the day thereafter. (Mother decided I was a lazy teen)

I was diagnosed at 52 because a very sharp doctor realized my unexpected fall on the sidewalk ("no, I didn't trip; there was NO dog") as cataplexy and sent me to a sleep doctor. I've taken ritalin, dexedrine, and finally Provigil. I am now also on Xyrem. Nothing works perfectly and I wouldn't dream of driving on a trip longer than 100 mi., for fear of falling asleep.

#40 uj9hdg

uj9hdg

    Member

  • Members
  • 4 posts
  • Location:Jacksonville, Fl
  • Interests:Jet Skiing, Saltwater Sport Fishing

Posted 28 April 2008 - 08:08 PM

QUOTE (greatbig47 @ Apr 29 2008, 12:38 AM) <{POST_SNAPBACK}>
Hi Dustin! I was diagnosed around the same age. Would have been nice to be diagnosed sooner, but I have to admit it made life interesting!

-Stu

Yes it has made life interesting.