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Narcolepsy, Human-Parvovirus B-19, Lyme Disease And Raynauds Phenomenon


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#1 sleepylisa

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Posted 03 July 2009 - 10:14 PM

OK, well I haven't been on here in a while b/c I thought I was coping well with my EDS with my Adderall. UNTIL THIS!!! Over Easter weekend I got sick with the worst headache, fever and joint pain of my life. It lasted for about 10 days until I finally realized it wasn't just a headache and made an appointment with my DR. (The gigantic Lymph Nodes popping out all over my head, neck, armpits and groin should have clued me in sooner but I guess I just thought it would all go away.) I won't ramble on here because I know most of us have a short attention span, but long story short is it appears I started with Lyme Disease (testing for this is difficult and I was "Positive" for 1 part of the test, "Equivocal" for another part of the test, and "inconclusive" for another part of the test (have to have 3 out of 5) my doc wasnt totally sure, but I had ALL of the symptons of Lyme.

I got so sick I had to be hospitalized, then after more bloodwork found out I had one of the worst infections of Human Parvovirus B-19 they had ever seen (at this point I thought it was only something that dogs get.) It causes extreme fatigue (gasp) and horrendous joint pain and inflammation (kids get this too but in children really only manifests as a rash on the cheeks that lookes like they've been slapped in the face and is called 5th Disease.)

I probably don't have to tell you that Lyme Disease also causes extreme fatigue and lymph node inflamation. That being said, it's been over 3 months and I am so exhausted I cannot stand it anymore. My body hurts, my joints ache, and now I have something called Raynauds phenomenon that came after the Parvo. My finger tips turn cold and white, then purple, then a blackish-blue. I have to stand under a faucet of hot running water half of the day to keep the circulation going and my finger tips from falling off.

I'm just wondering if ANY OF YOU have had ANY of these above diseases, viruses, etc. and could tell me how to get through all this. For a person with Narcolepsy who's tired all the time, this is really a cruel joke that I now have all this other crap too!! The DR says my immune system is just all outta whack and it has turned into an auto-immune disorder, which I know there has been recent research suggestiong that Narcolepsy may also been an auto-immune disorder?? Any help or suggestions are much appreciated!! Thanks, Lisa

#2 Mike M

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Posted 03 July 2009 - 10:39 PM

Lisa,

I have not had any of your new conditions (although I did have a positive Lyme's test - that was then negative on the Western Blot - go figure), but I know that others have had at least some of them. Hopefully, they will see your topic heading the next time that they are on. More than anything, I want you to know that I am thinking of you. Narcolepsy by itself is awful, but to add all of those other issues is a nightmare. I hope you will come here when you can to vent if nothing else. Please know that you are not crazy and that you have every right to be furious about all of this. That said, please keep plugging along. The fascinating thing in all of this is that narcolepsy is an auto-immune issue all by itself. The longer I deal with mine (and my allergies, and my irritable bowel syndrome, and my chronic sinusitis - which all seem to be due to a haywire immune system), the more I wonder what will be discovered about the auto-immune effects of narcolepsy. Good luck!

#3 jenji

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Posted 03 July 2009 - 11:55 PM

hey lisa:

Yes, it has finally been confirmed by researchers at Stanford that narcolepsy is indeed an autoimmune disorder. I'll try to keep this short as well.

I realize that your Lyme Disease results were/are borderline and that your doctor wasn't "totally sure." And so, did he screen you for lupus and/or rheumatoid arthritis (both autoimmune) as well? What about scleroderma? Here is a link to an autoimmune listing, so check it out and see if any of these fit your symptoms a bit better. here.

As far as Raynaud's Phenom, I've been dealing with that for about 25 years. It is also an autoimmune disorder. The worst thing you can do is run your fingers/hands/feet under hot water. Use lukewarm water or it can damage the nerves. Also, if I'm out and about and it hits, which frankly happens every single day no matter the weather, I can get the color/feeling/blood back into my hands by swinging my arms around like a windmill; as if I were swimming the crawl except with my arms totally extended. This allows gravity and movement to naturally restore blood circulation and is much better for the nerves. It's a bit more complicated with my feet. And if you can, keep your head warm as much as possible. In fact, I sleep with a ski hat on in the winter and roam the house 3 out of 4 seasons of the year with a ski hat on.

I also have Livedo reticularis, which is another autoimmune disorder that has to do with improper circulation. If you google the image of this disease you'll know if you have it the second you see what it does to your skin, so I would advise that you take a look b/c this disease in particular is indictive of an underlying disorder, usually a comorbid autoimmune circulation issue. For me it is part of my third autoimmune issue (yes, I said 3rd): antiphospholipid syndrome, which simply put is: thick sticky blood that causes circulation issues, raises the threat of blood clots and causes migraine headaches.

And finally, I have been told time and again that we should just go ahead and assume and treat my particular issues as if I have lupus, b/c frankly I have so very many of the symptoms of lupus (also autoimmune) including the butterfly facial rash that it's just ridiculous. However, my ANA blood tests came back negative (of course I haven't had the test in the past 10 yrs or so b/c what's the point) however,there is something they call lupus-like syndrome, which is basically when you have lupus with negative ANA, which can happen in a very small percentage of folks and in many it will at some point "turn" your ANA positive. Boosting my docs confidence in diagnosis is the fact that I do have antiphospholipid syndrome b/c that will often go along with lupus. And so lupus-like syndrome is one of my official diagnoses.

I'll tell you one thing, when I started out they thought I had Lyme Disease as well and my symptoms were so very painful and so I'd say it surely does sound autoimmune in nature. Something must have triggered an autoimmune response and now your body is very angry with the healthy cells in your body.

Try to keep your chin up b/c you'll need to be a major advocate in your health. Keep searching until someone gives you near defintive results and/or get a second opinion. Until you feel as though the diagnosis is right. So many autoimmune diseases mimic other autoimmune diseases, so it takes some aggressive investigating to find the right answer. I'm so sorry that you have to deal with this on top of your narcolepsy, but hopefully you'll find some answers and therein a treatment that will give you some relief from your pain very soon.

Best,
jenji

#4 sleepylisa

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Posted 04 July 2009 - 01:09 AM

Hi Mike and Jenji,

Thank you both SO MUCH for your encouragement and advise. I looked at those pictures and I DEFINITELY have similar problems going on with my legs as well. They are very splotchy, especially around my knees, shins and feet. A lot of the other auto-immune disorders really coincide with everything else that has been going on with me. Right now I am waiting to get some X-rays of my back because I had stress fractures of my L-4 and L-5 vertebrae several years ago and the inflammation from the Parvo seems to be exacerbating those old fractures. My spine has been severely curving over the course of the past 10 years (I'm only 31 for crying out loud!!) but I hunch over like my 80 year old grandma. My doc ran a blood test to test for something called HLA?? so I will see how that turns out but I don't really know what it means. Your stories both seem so similar to mine. I used to get tested all the time for LYME (before someone finally tested me for the Narcolepsy) and was always CLEARLY negative. Then when the headaches, fever and joint pain came they tested me again (around Easter) and this is when I got the mixed results. They re-tested me 2 weeks later and said that it was negative, but in the meantime I had been treated with Doxycycline (so wouldn't this be why I then tested negative?) Another weird thing!!!....when I was first tested for Lyme they also tested me for Mono (another thing I was constantly tested for before the Narco diagnosis...since I was always tired) and I was negative for Mono. Then 2 weeks later, when I was in the hospital and re-tested for the Lyme, I came back POSITIVE for MONO, but they said it was an old infection (something about it being the IgG or IgM...whichever one is for old infections). So HOW could I test negative for MONO my whole life, and then 2 weeks later test positive for an old infection (positive for Epsteing-barr virus)?????? Then they finally tested me for the PARVO and decided that parvo explained ALL my symptoms and that must have been the only thing I had all along. ARGGGHHH!!! I'm so confused and frustrated!!!! Now I have this Raynauds issue, horrible joint pain (and DEFINITELY wierd circulation issues...it's weird but my legs actually feel HARD??, I've been getting blood clots for the past 4 years, the stress fractures in my spine are flaring up!!!

There are nights I go to bed (and try to sleep well, but with Narcolepsy and vivid nightime hallucinations and sleep paralysis that's no easy task) but I lay in bed wondering what is going to be hurting when I wake up in the morning. This has been going on since Easter Sunday, and it's already July now, and I just can't take the mental torment that constantly feeling like crap is doing to me. I also have an Autistic 4 year old son who is extremely hyper-active and now wakes up asking me "mommy are you sick today or can we go to the park."

I really wish that I could find a doctor who could put all of my symptoms together and make them add up and help me with the pain. The dr gave me Naproxen but that is murder on my stomach and my severe GERD (Acid Reflux) issues.

Thank you BOTH!!! for taking the time to respond to me and for your encouragement. It means more to me than you could realize. Sleep well!!! ---lisaPosted Image

hey lisa:

Yes, it has finally been confirmed by researchers at Stanford that narcolepsy is indeed an autoimmune disorder. I'll try to keep this short as well.

I realize that your Lyme Disease results were/are borderline and that your doctor wasn't "totally sure." And so, did he screen you for lupus and/or rheumatoid arthritis (both autoimmune) as well? What about scleroderma? Here is a link to an autoimmune listing, so check it out and see if any of these fit your symptoms a bit better. here.

As far as Raynaud's Phenom, I've been dealing with that for about 25 years. It is also an autoimmune disorder. The worst thing you can do is run your fingers/hands/feet under hot water. Use lukewarm water or it can damage the nerves. Also, if I'm out and about and it hits, which frankly happens every single day no matter the weather, I can get the color/feeling/blood back into my hands by swinging my arms around like a windmill; as if I were swimming the crawl except with my arms totally extended. This allows gravity and movement to naturally restore blood circulation and is much better for the nerves. It's a bit more complicated with my feet. And if you can, keep your head warm as much as possible. In fact, I sleep with a ski hat on in the winter and roam the house 3 out of 4 seasons of the year with a ski hat on.

I also have Livedo reticularis, which is another autoimmune disorder that has to do with improper circulation. If you google the image of this disease you'll know if you have it the second you see what it does to your skin, so I would advise that you take a look b/c this disease in particular is indictive of an underlying disorder, usually a comorbid autoimmune circulation issue. For me it is part of my third autoimmune issue (yes, I said 3rd): antiphospholipid syndrome, which simply put is: thick sticky blood that causes circulation issues, raises the threat of blood clots and causes migraine headaches.

And finally, I have been told time and again that we should just go ahead and assume and treat my particular issues as if I have lupus, b/c frankly I have so very many of the symptoms of lupus (also autoimmune) including the butterfly facial rash that it's just ridiculous. However, my ANA blood tests came back negative (of course I haven't had the test in the past 10 yrs or so b/c what's the point) however,there is something they call lupus-like syndrome, which is basically when you have lupus with negative ANA, which can happen in a very small percentage of folks and in many it will at some point "turn" your ANA positive. Boosting my docs confidence in diagnosis is the fact that I do have antiphospholipid syndrome b/c that will often go along with lupus. And so lupus-like syndrome is one of my official diagnoses.

I'll tell you one thing, when I started out they thought I had Lyme Disease as well and my symptoms were so very painful and so I'd say it surely does sound autoimmune in nature. Something must have triggered an autoimmune response and now your body is very angry with the healthy cells in your body.

Try to keep your chin up b/c you'll need to be a major advocate in your health. Keep searching until someone gives you near defintive results and/or get a second opinion. Until you feel as though the diagnosis is right. So many autoimmune diseases mimic other autoimmune diseases, so it takes some aggressive investigating to find the right answer. I'm so sorry that you have to deal with this on top of your narcolepsy, but hopefully you'll find some answers and therein a treatment that will give you some relief from your pain very soon.

Best,
jenji



#5 Mike M

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Posted 04 July 2009 - 12:00 PM

Lisa,

You hopefully will continue to find lots of support her. I have no doubt that many of us have similar stories (each with its own twists and turns and levels of severity). I am grateful that my 12 year old daughter usually gets that the narcolepsy (and other things) often cause me to be inactive for long periods - although when she does lash out, it hurts A LOT. I can't imagine going through what you are going through right now with a hyperactive 4 year old. Do take Jenji's advice, though. NEVER give up on pushing your doctors. I know many of mine wanted to help, but their need to "solve" things often did more harm than good. Clearly, something has gone horribly wrong in your immune system. While they may never find "the one thing" behind it all (although lupus does sound like a good thing to pursue), there MUST be a cause for all of these things. One of the hardest things for me was to let go of the stress that every new "issue" set off in my body, and I did not have nearly the issues that you are facing. That stress, though, generally made everything worse (And occasionally added "new" problems - check out dyshidrodic eczema sometime).

I did want to share two things that jumped out for me in your last post. HLA is human leukocyte antigen. There are MANY different ones in our bodies, but certain ones are attached to various auto-immune diseases, including narcolepsy. The problem is that nearly have the people in the country have some of the HLAs tied to narcolepsy. Nonetheless, your doctor is looking for certain ones to help identify which diseases you might have. The other thing that jumped out at me was the mono testing. I have tested positive for a mono infection (an active one, not an old one) four times, which it technically impossible. When I saw your negative test followed by the positive test for an old infection, I initially thought that was "normal." But, then I processed your next comment, which is that you have NEVER had a positive mono test. Thus, you too have an "impossible" scenario with mono. You HAD to have had it at some point to have the positive for an old infection. I share that just to let you know that easily the mono could be tied into the autoimmune issues. Likely, other autoimmune things are set off by mono (in certain people), and some autoimmune things like trigger a positive mono test. One of the major elements of Dr. Mignot's recent work at Stanford is that narcolepsy is not just autoimmune, but also a disease with genetic and environmental triggers (personally I am guessing significant viral infections). I have no idea if any of this helps you, but wanted to share it just to remind you that others are definitely thinking of you and rooting for you.

Cheers!

#6 merrymom1013

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Posted 05 July 2009 - 03:13 PM

My daughter's narcolepsy seems to have been triggered by Lyme. Her initial Lyme tests were also inconclusive, and the Lyme went untreated for quite awhile causing all sorts of problems. A Lyme doctor saw her cataplexy & said she thought it was narcolepsy. Got to a sleep neuro & got the narcolepsy treated, but her symptoms got worse. The narcolepsy doctor told us her narcolepsy symptoms & other horrendous symptoms were being caused by an infection. We went back & got her retested for Lyme- definitely positive. Add in puberty & she was pretty much disabled for almost 3 years. Bottom line, when she had the worst of the Lyme, strep or anything else, the narcolepsy drugs didn't help much. She had severe cataplexy & slept up to 20 hours a day. If you want to know about life with Lyme, try to see the documentary Under Our Skin, which is now playing in a few theaters across the country. (My daughter has a brief appearance!) Now that she is recovered from the constant strep, Lyme etc., she is pretty much a regular narcoleptic. Meaning things are pretty good if she takes her adderall & xyrem, and paces herself. Her sleep specialist tells us none of the narcolepsy drugs are strong enough to help 100% of the time, and not enough to overcome the narcolepsy symptoms + another illness. So thanks to the Lyme doc who discovered the narcolepsy & the narcolepsy doc who found the Lyme, eventually it's all good. Or at least manageable.

#7 Mike M

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Posted 05 July 2009 - 04:47 PM

Now that she is recovered from the constant strep, Lyme etc., she is pretty much a regular narcoleptic. Meaning things are pretty good if she takes her adderall & xyrem, and paces herself. Her sleep specialist tells us none of the narcolepsy drugs are strong enough to help 100% of the time, and not enough to overcome the narcolepsy symptoms + another illness.


Merrymom, thank goodness they did get things figured out. I am also impressed by her sleep doctor's wisdom. I think many of us would be better off if all of our doctors truly understood that point. I am fascinated by the "constant strep" comments that you made. Was is full blown strep throat for your daughter and did it coincide with the Lyme's and narcolepsy? I ask because my initial quirky medical experience was constant "tonsillitis" as a young child. I would have swollen tonsils, but test negative (almost everytime) for strep. The doctor would put me on antibiotics, I would recover, and as soon as the meds ran out, I would get sick within days. As with my history of multiple bouts of mono, I have never encountered another tonsil story like mine until reading your post. It stuns me that once again I find a narcolepsy link when I have never found any other connection to my throat issues when I was young. I defintely would appreciate knowing more about your daughter's battle with her throat. I also realize that might be more than you want to share. Finally, if you do want to share the information, feel free to send me a PM. I would hate to undermine the true intention of this thread.

#8 hathor

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Posted 06 July 2009 - 04:50 AM

hi. in my family im the one with narcolepsy but my sister has raynauds. i never knew it was auto-immune!! i cant wait to go tell her. she has 3 children all girls (there is problems carrying boys in my family so it is all girls lol) anyway her 3 girls have raynauds aswell. the eldest one is 18 now but i remember when she was litle she couldnt walk with it because of the pain. we had to carry her up the stairs and get her onto the toilet without anything touching her feet or she would scream. now though she is fine. they all have attacks and my neice loses feeling in her hands now so she has to be very careful with hot things. in winter she wares hats and 2 pairs of gloves lots of pairs of socks and still loses the feeling. my sister has had raynauds her whole life but it calmed down and isnt so bad since she had children. as for lime disease i havent got a clue what that is. i have heard of it though. anyone care to explain?

#9 amazingracie28

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Posted 06 July 2009 - 02:10 PM

OK, well I haven't been on here in a while b/c I thought I was coping well with my EDS with my Adderall. UNTIL THIS!!! Over Easter weekend I got sick with the worst headache, fever and joint pain of my life. It lasted for about 10 days until I finally realized it wasn't just a headache and made an appointment with my DR. (The gigantic Lymph Nodes popping out all over my head, neck, armpits and groin should have clued me in sooner but I guess I just thought it would all go away.) I won't ramble on here because I know most of us have a short attention span, but long story short is it appears I started with Lyme Disease (testing for this is difficult and I was "Positive" for 1 part of the test, "Equivocal" for another part of the test, and "inconclusive" for another part of the test (have to have 3 out of 5) my doc wasnt totally sure, but I had ALL of the symptons of Lyme.

I got so sick I had to be hospitalized, then after more bloodwork found out I had one of the worst infections of Human Parvovirus B-19 they had ever seen (at this point I thought it was only something that dogs get.) It causes extreme fatigue (gasp) and horrendous joint pain and inflammation (kids get this too but in children really only manifests as a rash on the cheeks that lookes like they've been slapped in the face and is called 5th Disease.)

I probably don't have to tell you that Lyme Disease also causes extreme fatigue and lymph node inflamation. That being said, it's been over 3 months and I am so exhausted I cannot stand it anymore. My body hurts, my joints ache, and now I have something called Raynauds phenomenon that came after the Parvo. My finger tips turn cold and white, then purple, then a blackish-blue. I have to stand under a faucet of hot running water half of the day to keep the circulation going and my finger tips from falling off.

I'm just wondering if ANY OF YOU have had ANY of these above diseases, viruses, etc. and could tell me how to get through all this. For a person with Narcolepsy who's tired all the time, this is really a cruel joke that I now have all this other crap too!! The DR says my immune system is just all outta whack and it has turned into an auto-immune disorder, which I know there has been recent research suggestiong that Narcolepsy may also been an auto-immune disorder?? Any help or suggestions are much appreciated!! Thanks, Lisa



I've had Raynaud's as a symptom of Lupus for many many years now-it completely sucks. I used to live in Wisconsin which made it horrible for most of the year. Since I moved to South Carolina 4 or 5 years ago its not as bad but still gets triggered when I walk into air conditioning from the heat. I had an appt with my sleep doc two weeks ago and he completely agreed that my N could very well be a product of my out of whack immune system. Makes sense but as you already know, an out of whack immune system can cause all sorts of misery. As far as the Raynauds, if you live in a cold place switch to mittens rather than gloves in the winter-its makes a difference. Also, if you smoke-STOP...it constricts blood vessels and makes it worse. Be careful not to put your hands in hot water when you're having an attack, can cause tissue damage. There are all sorts of good websites out there for Raynauds-just google it and you'll find a ton of links....hope this helped a little....

#10 sleepless sleeper

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Posted 21 July 2009 - 02:46 PM

about a month ago i reposted an old thread that i think MikeM started a looooooong time ago. i mention human parvo, epstein barr, and another one. i dont' have time now to search or retype, and i'm typing a reply here so that hopefully i'll remember to do one or the other later. i've had so crazy , bu tverified, illnesses. these all came later in life after having n, which i've had since being a young child. i did have chicken pox at the age of three, and i've wondered... oh, well, gotta go.

#11 sleepylisa

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Posted 24 August 2009 - 02:26 AM

Hi Jenji, Mike, and everyone else kind enough to leave a reply,

So the test's came back that I am HLA-B27 Positive. Still trying to figure out what that means but in the meantime have been having awful problems with my vision (which has always been perfect) for the first 1/2 hour to an hour I am up. My vision is blurry amnd I actualy walked right into the corner of the wall 2 weeks ago and still have a knot on my head. I went to see an opthamologist who didn't see anything wrong, but it was in the late afternoon. It's really odd, but after an hour or two of moving around the house my vision clears and is just fine. I'm puzzled by this one? In looking up HLA-B27 Positive, I read that it can cause Anklosing Spondilitis (sp?) which would coincide with my backpain?, crohn's disease (my stomach issues??) and uveitis (my eye problems??)...I'm trying not to look too much into it but I REALLY know something else is going on here other than a little blurry eyes (opthamalogist gave me some eye drops for dry eyes...ugh!!) and backache. The most annoying symptom of all is I feel like I can't breath. The slighest bit of pressure around my ribs (like wearing a bra) makes me feel like I can't inhale or breathe. I am so frustrated!! I know these are questions for doctors but it's hard to get someone to listen to you if you have something they can clearly visibly see...let alone trying to fit all the pieces together to something that you can't see.

Well I know you guys probably don't have the answers, but I just needed someone to talk to. I hope you are all doing well and please feel free to write me at akronlava@yahoo.com. thanks to anyone still reading this, lisa


hey lisa:

Yes, it has finally been confirmed by researchers at Stanford that narcolepsy is indeed an autoimmune disorder. I'll try to keep this short as well.

I realize that your Lyme Disease results were/are borderline and that your doctor wasn't "totally sure." And so, did he screen you for lupus and/or rheumatoid arthritis (both autoimmune) as well? What about scleroderma? Here is a link to an autoimmune listing, so check it out and see if any of these fit your symptoms a bit better. here.

As far as Raynaud's Phenom, I've been dealing with that for about 25 years. It is also an autoimmune disorder. The worst thing you can do is run your fingers/hands/feet under hot water. Use lukewarm water or it can damage the nerves. Also, if I'm out and about and it hits, which frankly happens every single day no matter the weather, I can get the color/feeling/blood back into my hands by swinging my arms around like a windmill; as if I were swimming the crawl except with my arms totally extended. This allows gravity and movement to naturally restore blood circulation and is much better for the nerves. It's a bit more complicated with my feet. And if you can, keep your head warm as much as possible. In fact, I sleep with a ski hat on in the winter and roam the house 3 out of 4 seasons of the year with a ski hat on.

I also have Livedo reticularis, which is another autoimmune disorder that has to do with improper circulation. If you google the image of this disease you'll know if you have it the second you see what it does to your skin, so I would advise that you take a look b/c this disease in particular is indictive of an underlying disorder, usually a comorbid autoimmune circulation issue. For me it is part of my third autoimmune issue (yes, I said 3rd): antiphospholipid syndrome, which simply put is: thick sticky blood that causes circulation issues, raises the threat of blood clots and causes migraine headaches.

And finally, I have been told time and again that we should just go ahead and assume and treat my particular issues as if I have lupus, b/c frankly I have so very many of the symptoms of lupus (also autoimmune) including the butterfly facial rash that it's just ridiculous. However, my ANA blood tests came back negative (of course I haven't had the test in the past 10 yrs or so b/c what's the point) however,there is something they call lupus-like syndrome, which is basically when you have lupus with negative ANA, which can happen in a very small percentage of folks and in many it will at some point "turn" your ANA positive. Boosting my docs confidence in diagnosis is the fact that I do have antiphospholipid syndrome b/c that will often go along with lupus. And so lupus-like syndrome is one of my official diagnoses.

I'll tell you one thing, when I started out they thought I had Lyme Disease as well and my symptoms were so very painful and so I'd say it surely does sound autoimmune in nature. Something must have triggered an autoimmune response and now your body is very angry with the healthy cells in your body.

Try to keep your chin up b/c you'll need to be a major advocate in your health. Keep searching until someone gives you near defintive results and/or get a second opinion. Until you feel as though the diagnosis is right. So many autoimmune diseases mimic other autoimmune diseases, so it takes some aggressive investigating to find the right answer. I'm so sorry that you have to deal with this on top of your narcolepsy, but hopefully you'll find some answers and therein a treatment that will give you some relief from your pain very soon.

Best,
jenji



#12 veillettecathy

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Posted 23 August 2012 - 06:12 PM

I have Livedo Reticularis that started between my knees around 2007 and around the same time I told mt doctor to test me for a Thyroid/Endocrine disorder. The Endocronologist stated I had "Dominant Thyroid Nodule" and am scheduled for ultrasounds every year or 2 and a year after it is biopsied, on Synthroid 100mcg..
Also started at around this date was right shoulder pain that radiated to my neck,axilla,rib cage, shoulder and arm and some fingers. 2009 Cervical Anterior Discotomy with 3 cadaver disc and plate but 2012 MRI now shows cord compression and bulging in Posterior cervical spine with 2 Neurosurgeon "There is nothing more we can do" EMG prior to surgery showed severe nerve damage and recent EMG worse which they want to do Carpel tunnel and Ulnar surgery. But the Livedo has spread to all my body and as 2 doctors stated "severe" also clotting test were negative? Vitamin D has been 20 and deficient for quite some time even with 50,000. I can not get any Maine doctors to do a skin biopsy or further investigate so when we go back to Florida I know I will be able to get things going. Also Scalp Lesions, non itching starts as bump under skin then opens scabs then bleeds and leaves scars/indentations that get quarter size and 12 or more months to heal but then start up again, they were dx as Psoriasis then Seborrhea keratosis and I ? the dx..
I find Narcoleptics are treated like we are "psych cases" in Maine anyways!!! Also I asked my primary care MD to see if I had either "Thoracic Outlet Sx" or Pancoast Tumor" she did nothing and when I asked a Dermatologist if he was investigate the cause of Livedo like clotting disorder,autoimmune,cancer,cardiovascular or endocrine and if maybe my fatique was related to the worsening of this mottled skin, he said "It is only a condition" I am sick and tired of neglegence in the field of medicine. I blame alot of my bone stuff with the multiple auto accidents,falls etc and the misdx and then inadequate N/C tx..