Jump to content


Photo

Is Narcolepsy Neurodegenerative?


  • Please log in to reply
35 replies to this topic

#21 Nyx

Nyx

    Member

  • Members
  • 64 posts

Posted 04 September 2009 - 11:54 PM

Oh, man, I hate to do this, but this was published June 25 this year. It states, "Although a close association
between human leucocyte antigen (HLA) and human narcolepsy with cata-
plexy suggests an involvement of autoimmune mechanisms, this has not yet
been proved." Is this not what was proven in May?

Also it says, "The major pathophysiology of human narcolepsy has been recently discov-
ered based on the discovery of narcolepsy genes in animals... " What do they mean by "recently"? It's been a very long time.

See? To me these are contradictive to what has already been published. The first point may have just been timing (but a month in this field is a long time), but the second one is definitely old -very old- news.

"hypocretin replacement
therapy may be a promising new therapeutic option, and animal experiments
using gene therapy and cell transplantations are in progress." I asked my doctor about this a few years ago and he said that it would probably be a couple of decades for a new, true synthetic of orexin. I know that modafinil (sp?) is suppose to help with that, but it's not a true replacement. The cell transplantation experiments are sad to think of. This is what the pdf is that I attached in my original posting here. What's getting me is this: If there was no degeneration, then why are they trying to research transplants of cells that have died?

SORRY NYX! I couldn't help it.

Good luck with studies, and if there's anything that I can do to help you with phone calls, etc, let me know. I'm sure that you truly are strapped for time.


To hit your last point, the fact that they're trying cell transplantation is neither here nor there when it comes to relying on a definitive cause of narcolepsy (i.e., degenerative or not). Basically, the definition of a degenerative disease is one where the structure or function of the tissue/cells progressively worsens over time. If, for instance, the damage to someone's "hypocretin neurons" was done at one time in the past due to an auto-immune over reaction or other mechanism, that person may be cured by transplanting the cells they've damaged. If it's a progressively degenerative disease, the transplanted cells will be destroyed over time, so the benefit isn't as certain, but would likely help for as long as they stuck around. Then again, even if it's an auto-immune issue, if you continue to have "flare ups" you could also damage the transplanted cells if they have the same markers that triggered the immune response before. But all of this is still theories and conjecture. They're just trying to cover all bases so that research and treatments are progressing on all fronts in the event one turns out to be a dead end. Don't want to put all our eggs in one basket, right?

Alright, I'm unfortunately too tired to hunt for good quotable studies right now, but take a read through this. I just skimmed it through half-closed eyelids, but I think it should help. I believe it was Stanford who put out the "definitive" autoimmune paper you're talking about, so if their website still says it's uncertain.... I imagine nothing has been proven conclusively yet. I'll have to check later, but it's probably hard to say it's definitely autoimmune based on one study and one study group of patients. And as I hypothesized above, some people could have narcolepsy for different reasons, so while some may have it due to an autoimmune response, others could have developed it for a different reason entirely (i.e., born without enough receptors for hypocretin, brain injury (stroke, trauma, etc.), or other disease). So, they've got to hedge their statements. And I'm also guessing that not ALL patients in their study had the same marker, and think of how hard it would be to PROVE that that one mutation was the cause. I imagine they'd have to genetically alter mice or the like to recreate it and try to narrow down the direct cause and effect. So many variables.... Oops. Here's that link I thought it would be great for you all to check out:

http://med.stanford....lepsy/faq1.html

#22 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 873 posts
  • Gender:Not Telling

Posted 07 September 2009 - 03:47 PM

Wow. I just got an email this morning saying that they just had a cancellation, so there's an opening and I can attend the symposium! If you guys are serious about helping to make this happen let me know. I'm so excited, but at the same time, yikes!


That's great! Let us know what to do.

Sorry that you answered each of my posts. They were me venting my frustration. My frustration is that I do not understand, and I know that I probably won't understand completely. I said that I would take your advice and leave it be, but I couldn't. You continued to try to help anyway, and I appreciate it.

#23 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 873 posts
  • Gender:Not Telling

Posted 08 September 2009 - 12:43 PM

I'll volunteer.

My son will be home any minute from his first day at preschool, so I'll get back to you later today.

#24 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 873 posts
  • Gender:Not Telling

Posted 08 September 2009 - 07:21 PM

Okay, here's the link to get people together on this:

http://narcolepsynet...the-sleep-conf/



Nyx - what is our deadline?

#25 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 873 posts
  • Gender:Not Telling

Posted 10 September 2009 - 12:01 PM

Nyx, I don't think it is any longer an issue. There are ways of circumventing this, which I will take care of IF we gather enough funds. No one is responding because it costs money, period, and not because of your "questioned" integrity. Your integrity is not an issue. You are too easy to track down, find, and hang by your toenails in a cold wind.

#26 jenji

jenji

    Member

  • Members
  • 187 posts
  • Gender:Female
  • Location:new york
  • Interests:the arts

Posted 10 September 2009 - 10:03 PM

Stacy,

Have you been screened for MS? And by that I mean, have you had an MRI? A friend of mine has MS AND N, which is quite common actually. And so she's on the mission to have me scanned (I haven't had one it about 10 years) b/c my C symptoms/attacks have been so much worse as of late (very MS like), but I started a new job and grad school, so I'm doing quadruple what I was doing before and so I think it makes sense. My neurologist seems to think that all of my symptoms: sudden sagging face, so much so people think I'm having a stroke, sudden staggering gait, sudden arm weakness and sometimes full out collapse. But he insists this is N w C. And so.


I take Adderall too and my cognitive is absolute crap. Sometimes it's there, sometimes it's not. And when it's not, it is so not. The aphasia is a killer. Embarrassing at university, as are the C attacks. Had one tonight after having taught from 11-1, classes 1-9.

So very lovely.

jenji

#27 Stacy D

Stacy D

    Member

  • Members
  • 40 posts
  • Gender:Female
  • Location:Maryland
  • Interests:Conspiracy Theories

Posted 11 September 2009 - 12:18 AM

Stacy,

Have you been screened for MS? And by that I mean, have you had an MRI? A friend of mine has MS AND N, which is quite common actually. And so she's on the mission to have me scanned (I haven't had one it about 10 years) b/c my C symptoms/attacks have been so much worse as of late (very MS like), but I started a new job and grad school, so I'm doing quadruple what I was doing before and so I think it makes sense. My neurologist seems to think that all of my symptoms: sudden sagging face, so much so people think I'm having a stroke, sudden staggering gait, sudden arm weakness and sometimes full out collapse. But he insists this is N w C. And so.


I take Adderall too and my cognitive is absolute crap. Sometimes it's there, sometimes it's not. And when it's not, it is so not. The aphasia is a killer. Embarrassing at university, as are the C attacks. Had one tonight after having taught from 11-1, classes 1-9.

So very lovely.

jenji


I haven't been screened but I've been wondering about it because of how bad my cognitive abilities have gotten. I don't even try to read anymore and I'm even having trouble understanding what people are saying to me. It's like I hear the words, but I can't comprehend it. It makes me feel really stupid especially since it's not something I can really explain to people, I just have to let them think I'm stupid. Do you have a good way to explain the aphasia to someone who doesn't experience it? It's so hard to explain because it just doesn't make sense that I suddenly don't understand things. I've been telling my husband that my brain is melting.

Also, I've had a lot of "pins and needles" in my legs that I thought may be restless legs but it's happening more frequently when I'm awake. I'm hesitant to say anything about MS though because I don't want to sound like a hypochondriac. I already take enough crap for the N. It's still a couple of weeks until my next doc appointment anyway. Maybe I'll try to find some others on the forum who also have MS and see if that's what may be going on.

#28 Nyx

Nyx

    Member

  • Members
  • 64 posts

Posted 11 September 2009 - 01:03 AM

I wish they'd get their crap straight and agree on something, but I am going to say that my experience has definitely been progressive, I don't know about neuro-degenerative but I was doing some reading on Alzheimer's and Dementia and if you take the clear REM sleep problem away, I could easily be diagnosed with dementia. This is also happening pretty fast for me. A few months ago I could read except on really bad near-crash days. Now I can't read and comprehend much more than a headline on almost any day, with or without adderall. I get so confused, or "confuddled" as the dementia website said. My son came home with a newsletter from school today and I have no idea what it said. I tried to skim for dates and put them on my calendar but that was all I could do. I'm also having a hard time understanding people when they talk. They may as well be speaking gibberish; I know they have a point but I don't know what it is. I need things to be explained thoroughly and concisely.

Why is an MRI never done for N? It's a useful tool for so many other neurologic disorders, wouldn't it show something characteristic of narcolepsy? Also, why isn't the hypothalmus being studied more? It could explain why PWN have multiple auto-immune disorders. Or has this already been done and found inconclusive? I don't think the hypocretin thing should be all-or-nothing. It isn't that way or other hormones, there are acceptable ranges. They aren't going to tell me I don't have a Thyroid disorder just because I have a detectable level of TSH, right?

PS It took me about 30 minutes to write this post. I hope it's not too ramble-y. I tried to proofread and edit.


Stacy D and jenji: There definitely does seem to be a potential connection between MS and N/C, and while I only just did a quick search online (not even through the pubmed medical papers), it seems like a good theory is that when you have MS, it's an auto-immune disorder where your body attacks and destroys the myelin around neurons in your brain (myelin helps the impulse travel quickly). As the nerves get demyelinated, it causes areas of damage in the brain, called plaques, which disrupt brain signals. MS can cause plaques in many different places in the brain, so if one of the places plaques developed was in the hypothalamus, you could end up with secondary N/C, basically meaning that it's essentially caused by the MS. They found that a lot of people with MS have sleep disorders, and have found a number of people that develop N/C (going back I just checked pubmed, and a 2005 study (from Stanford I think) said that they did a review of past studies and out of 116 N or N/C (can't remember now) cases they reviewed, about 10 were patients who were diagnosed with MS first).

But jenji, your doctor could be right that the symptoms you've described could simply all be attributed to N/C. Suspecting and diagnosing MS sounds like a very wishy washy prospect. If you read up on symptoms of MS, they're so varied, unless you happen to have one of the classical symptoms like optic neuritis (inflammation of the optic nerve). Also, MS tends to present at first as "flare ups" of symptoms that go away or are episodic. But not always. You could have an MRI for some other reason, have absolutely no symptoms EVER, but find out there are plaques and you have MS - and still live happily ever after. Or you could have your first flare up and quickly progress to debilitating symptoms. Other than vision problems, MS can cause plaques in many places including the cerebellum, which leads to loss of balance and clumsiness, fatigue, vertigo, hearing loss, painful muscle spasms ANYWHERE in the body, etc. There is also documentation that people with MS feel worse in hot temperatures, like after a hot shower or exercising. I see one site that mentions the theory is that nerve impulses move slower in heat, so you get more symptoms and problems.

Anyway, I have learned a little about MS, but wasn't quite sure what the best symptoms were to suggest you think about if you really worry you might have it. Apparently it's incredibly hard to pin down. It looks like diagnosis is a combination of the physical exam, symptoms, blood tests (and perhaps a CSF test of spinal fluid), and an MRI to identify plaques. An MRI is a pretty pricey thing (thousands of dollars), so I'm assuming that your doctor might be reticent to order one if he thinks all of your symptoms are neatly explained by N/C, and doesn't feel that MS is likely. And if he's a neurologist, he's likely seen a number of cases of MS (and would be pretty well read up on MS, unlike little old ignorant second year med student me), and would probably be happy to order the test once you raised the concern if he thought it was a real possibility. Personally, I'd take some comfort that he didn't think it was necessary. But if you REALLY feel strongly about it, bring it up again and let him lay out his reasoning and put you at ease.

I didn't find anything really ground breaking in my quick pubmed search. Just that there has been some correlation found bewtween MS and N with or without C, and that it's variable whether levels of lowered hypocretin or direct hypothalamic plaques need to be present to manifest both. I did find some studies that suggested modafinil (provigil) could be helpful for people with MS, but that's also not conclusive yet. Ok, so it's still all pretty amorphous, but it's something to put on my list of N topics to research later.

To sum up another of my rambling over-long posts, I guess my bottom line suggestion would be not to worry too much yet. Both of you should talk to your doctors. If you're really worried about MS, discuss it with him. And Stacy, tell your doctor how bad your concentration is and how you can barely read or comprehend things anymore. I really think that trying a different med would be worth it if you saw some improvement there. Good luck guys.

#29 Nyx

Nyx

    Member

  • Members
  • 64 posts

Posted 11 September 2009 - 01:09 AM

I haven't been screened but I've been wondering about it because of how bad my cognitive abilities have gotten. I don't even try to read anymore and I'm even having trouble understanding what people are saying to me. It's like I hear the words, but I can't comprehend it. It makes me feel really stupid especially since it's not something I can really explain to people, I just have to let them think I'm stupid. Do you have a good way to explain the aphasia to someone who doesn't experience it? It's so hard to explain because it just doesn't make sense that I suddenly don't understand things. I've been telling my husband that my brain is melting.

Also, I've had a lot of "pins and needles" in my legs that I thought may be restless legs but it's happening more frequently when I'm awake. I'm hesitant to say anything about MS though because I don't want to sound like a hypochondriac. I already take enough crap for the N. It's still a couple of weeks until my next doc appointment anyway. Maybe I'll try to find some others on the forum who also have MS and see if that's what may be going on.

For anyone looking for an official definition of aphasia: "Aphasia: One in a group of speech disorders in which there is a defect or loss of the power of expression by speech, writing, or signs, or a defect or loss of the power of comprehension of spoken or written language."

As for the pins and needles in your legs, I think you should mention it to your doctor, although I completely understand the fear that he'll think you're a hypochondriac. Give him your symptoms, how long they've been going on for, when they usually happen, etc., and let him decide it's nothing to worry about, or run a few tests. Better to get some peace of mind. And better to know now if something IS going on that you could try to get some treatment for.

#30 disordered

disordered

    Member

  • Members
  • 14 posts
  • Gender:Female
  • Location:WI

Posted 11 September 2009 - 10:55 AM

Thank you! I needed something to get me back to my proactive self, and I think this your post did it!! No need to delete Nyx, I experience all of that! The hand cramps (both hands), difficulty with writing, the curling nails (originally just my index fingers, now my middles have begun to as well)...I have all that and more.

Here's part of my story:
Around last fall, I finally became fed up with how I was feeling, how many new symptoms seemed to be cropping up, and with my primary doc not listening to me. I went through a round of docs and exams, including the EMG (I had one spot on my inner wrist that they also redid about 10-12 times, turning it up each time, with no clear reason), yet am still not sure what's going on. The only clear results were carpal tunnel (both hands), a myofascial pain condition, and a bulging cervical disk. All of these play a part in a lot of the random shooting tingly sensations as well as pain and odd pressure feelings in arms and legs. Osteoarthritis and bursitis have both been mentioned about various leg areas (rheumy #1 said osteo in right knee and rheumy #2 said osteo in the left knee). One doc asked me if I had been dx'd with fibro yet (no), and the words rheumatoid arthritis, lupus, and ms have been bandied about, but never dx'd or ruled out. Nerve neuro doc sent me to a diff neuro that specialized in Dysautonomia (basically a dysfunctional autonomic nervous system). Neuro #2, said yes, I have dysautonomia and that the dysautonomia is the cause for all of my symptoms (including the N, but that's another story) and I should eat better, exercise more, and move somewhere warm...and for more info on the dysautonomia, go to this site: http://www.dynakids.org/. I tried calling neuro #2 for a follow up appt, but was told he didn't need to see me anymore, neuro #1 knew enough to help me with it. I'm not too thrilled with neuro #2, so that could be shading my feeling about the dysautonomia dx, but I have a hard time with it when he didn't even run any tests (common dsyautonomia tests include tilt table and sweat test) for what is a fairly unknown condition.

Anyways, after various half answers and too many docs, I decided to give it a rest for a while. I did find some relief from the pain associated with the Myofascial through the graston technique (helps with pain trigger points I have in my back and neck), so that was a huge relief.

In case this can also help someone else with what they are going through, here's my quick health bio as well:
31 y/o female previously dx'd with N, IBS, Migraines, and Raynauds. Also a very lengthy family history of autoimmune conditions.
Random symptoms that led to my mini health crusade include: all over pain (from achy to stabbing and all in between), nerve issues (mainly in arms and legs), constant low grade fever, hair changes, loss of hand coordination and grip, and a spike in my N symptoms...plus pretty much all of the stuff Nyx mentioned.

Many of the symptoms had been progressing over the years, some I have had for many years and either thought were normal, or too trivial to mention. I was also very concerned about dealing with hypochondriac claims. Seems to be a lot of us pwn's with that concerns...doesn't help that most pwn go through many docs dismissing their N symptoms before dx...it's hard when a doc tells you that you are just lazy!

To respond to the content of this thread (I know I went a bit off track, sorry!), I haven't done enough research to back anything I feel with medical knowledge, but I have a difficult time believing N isn't neurodegenerative. I have personally felt the effects on my cognitive reasoning, speech, memory.......................oh yea, and my ability to focus. (ex: this post took me almost 45 mins to type)

#31 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 873 posts
  • Gender:Not Telling

Posted 11 September 2009 - 11:17 AM

Okay, guys, have you missed my postings of my MS symptoms? They were so bad that one specialist thought I had it even though no scarring was found in MRI. He wanted me to get a spinal. Another doctor was convinced that my melanoma metastasized to my brain.

It was mostly my meds. I was overmedicated with n meds. The majority can be attributed to stims.

I had EVERY SYMPTOM DESCRIBED BY ALL OF YOU, and then some. Disordered, I had the same alternate dx's tossed around for a while. Oddly, I also have herniated disk in neck and others bulging. Everything you mention I have experienced. EVERYTHING.

Jenji, can you attest to my rambling in my posts? Confusion? Getting lost?

Still get an MRI. If it comes back clear, force yourself to get off meds for a while. It took me a month and a half. Some symptoms persisted beyond that, but they were much better. Some are still here, but I had to get back on meds after a month and a half.

Don't believe that you can do it? How can you not if you end up not having MS? I didn't think that I could, and it was difficult, which is an understatement. I would do it again, though, now that I know the difference.

And Nyx, your answer is perfect for what this thread turned into. It seems that there are a few in the medical community that state it is not common to have MS and N. Parkinson's is another. All three are related in regards to genetic markers (I think markers, it's been a while since i looked into this). Amazingly, there are a few people that I've met online that have N and MS.

#32 disordered

disordered

    Member

  • Members
  • 14 posts
  • Gender:Female
  • Location:WI

Posted 11 September 2009 - 12:27 PM

Okay, guys, have you missed my postings of my MS symptoms? They were so bad that one specialist thought I had it even though no scarring was found in MRI. He wanted me to get a spinal. Another doctor was convinced that my melanoma metastasized to my brain.

It was mostly my meds. I was overmedicated with n meds. The majority can be attributed to stims.

I had EVERY SYMPTOM DESCRIBED BY ALL OF YOU, and then some. Disordered, I had the same alternate dx's tossed around for a while. Oddly, I also have herniated disk in neck and others bulging. Everything you mention I have experienced. EVERYTHING.

Jenji, can you attest to my rambling in my posts? Confusion? Getting lost?

Still get an MRI. If it comes back clear, force yourself to get off meds for a while. It took me a month and a half. Some symptoms persisted beyond that, but they were much better. Some are still here, but I had to get back on meds after a month and a half.

Don't believe that you can do it? How can you not if you end up not having MS? I didn't think that I could, and it was difficult, which is an understatement. I would do it again, though, now that I know the difference.

And Nyx, your answer is perfect for what this thread turned into. It seems that there are a few in the medical community that state it is not common to have MS and N. Parkinson's is another. All three are related in regards to genetic markers (I think markers, it's been a while since i looked into this). Amazingly, there are a few people that I've met online that have N and MS.


Thanks Sleepless, I have come across a number of your posts, and wondered about the med aspect. Can I ask which particular med seemed to be the cause? I ask because beyond a 1 week trial of imipramine when first dx'd, the only N med I have only taken is dextroamphetamine. I hesitate to think it's the dex, because I was off of it for 1 1/2 years, and still had a number of non N symptoms. I am on 3 other meds (for IBS and GERD and my BC), and my docs and I have looked at possible interaction issues, but onset timing is way off. I do believe the dex is involved in my memory issues, and was actually told as much by my doc when first prescribed.

An MRI is a good idea, if even to just have a 'baseline' for the future, I just always feel weird asking a doc to do a specific test (hypochondria fears again). I see my nerve neuro in Nov, I'll ask him about it then.

Ironic timing: I found out last night that my aunt (dx'd with idiopathic hypersomnolence 6 yrs ago) has just been dx'd with MS.

#33 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 873 posts
  • Gender:Not Telling

Posted 11 September 2009 - 02:42 PM

The meds that I was on were: dex, ambien CR, and celexa.

I was also taking crysal (bcp) and meds for asthma/ allergies: advair and flonase.

I stopped everything so I can't tell you which med did it. I think all neurological ones combined.

One neurologist that I saw almost 2 years ago thought my dex was causing spinal cord spasms in my neck. About six years ago, my forgetfulness/confusion/spacing out became noticeable enough that a neurologist sent me to a neuropsychopharmacologist (?) that ran a lot of tests on me. He thought that I was on too many neurological meds. At that time I thought he didn't know what he was talking about because he dx'd me with ADD or ADHD. He gave me that dx because I scored very badly on a computer test designed to see how well you can focus. I missed most questions because I fell asleep. He knew I had N.

I don't know if it was any one med, but it just can't be right for your body to take pills to keep from sleeping, then pills to sleep, then pills to keep from having hh, sp, and c. I think that it was an amalgam of all. In the end, I believe the neuropsycho guy was on the money - except for the computer test result.

And in regards to your aunt's dx: As far as I understood one of the doctors that I saw, you must receive some type trauma to the spinal cord from illness, physical force, etc, in order to receive the scarring. You may want to double check that. However, similar to N which is also an autoimmune disease caused by outside influences, you must supposedly first have the genetic marker for it. Other people in my family have narcolepsy, so in my case I say it was somewhat hereditary but probably not in the strictest sense. Someone on here stated that a lot of people have these genetic markers and never get the disease. Maybe you don't have it so don't stress about it. If you do have it, then please know that not all cases are progressive. Just get tested and be calm until then. I know it's all scary. By the time last February rolled around, I was convinced that I was going to die. Things were horribly wrong with me, and I could barely move. I had already been in bed for months and felt physically horrible. Electrical jolts, tingling, painful frozen spots that felt like fire, spinal cord spasms, vision problems associated with MS (forgot the name) - but like going blind which was scary, coordination woes, bladder issues but not quite the same as continence probs. I just never realized I had to go until my bladder was full, like a LOT. I could not raise my arms above shoulder height. I could not bathe myself. The times that I did take a shower, the heat would get to me and it would take at least an hour to recuperate from the physical and heat exhaustion. Forgetting words, using wrong words, spacing out in mid conversation, staring into space, I also had persistent low grade fever. Fortunately, it was recorded at dr office a few times. This is suspect to doctors. Thankfully, one specialist did say that amphets can cause that. I have been called hypochondriac for years because of N, herniated disk in neck, and then these MS symptoms. I know what you mean about asking for certain tests. Every symptom that I have ever complained about in my life that gave me the hypochondriac label can be attributed to one of those three things. I would have understood about the meds for the MS symptoms years ago if the guy had not have given me the ADD dx and accepted that I had N. He said it didn't matter.

Okay, after all that, my answer is "I don't know which med specifically." I am now on as little medication as possible, which makes it difficult to function, but it is better than not functioning at all.

I no longer take Ambien, but I am on the same others. I did recently switch to Adderall to see if it would help better than dex, which it doesn't, but the end results are the same anyway. I take as little as I can to get through the day and not at all on days that I can get by while incapicitated ( I mean hubs home to watch kids).

MS is nothing to mess around with, though, so please get tested. If you have to wait until November, then you may consider slacking off on meds at least a little bit. Start playing around with them. My doctor told me not to, but I did anyway because I would have had to wait longer AND get another spinal poke.

#34 disordered

disordered

    Member

  • Members
  • 14 posts
  • Gender:Female
  • Location:WI

Posted 11 September 2009 - 05:20 PM

Thanks sleepless, I really appreciate the info and your insight! I'm sorry about the rough time you went through. I was with my mother through a similar period (before a-typical sarcoidosis dx), and I know it was pure determination that pulled her through....you sound like you have a fair amount of determination yourself!

To be honest, I always figured that MS was the least likely option until a friend with MS asked me about it, and even then I didn't think much of it...after all, I was more aware of the autoimmune conditions that my mother has (too many to list) and the increased chances for those. Finding out about my aunt, well that hit a bit of a nerve, because I do have the genetic marker and we have a very strong autoimmune streak in my family. As for dx'd sleep conditions in my family: Mom - N, Sister - N, Gma - N, Aunt - I.H. I'm fairly close with my family, so I've been able to also watch some of the progression of their various conditions (all dx'd with more than 1) The upside of all of this is two-fold: I have an idea of what things to keep an eye out for, and I have wonderful role models who have shown me how to deal with life and everything it can throw at you.

I'm lucky to still be only taking a med to stay awake, no meds for sleeping...yet. My sleep doc has suggested xyrem as my cat has increased, but I want to do a bit more research before I try it. Maybe I'll give my nerve neuro and/or my internal med doc a call before my appt and see what they think about the MRI....just in case. I would really rather rule something out that stay mum about it.

Thanks again!

#35 Nyx

Nyx

    Member

  • Members
  • 64 posts

Posted 12 September 2009 - 02:01 PM

Thank you! I needed something to get me back to my proactive self, and I think this your post did it!! No need to delete Nyx, I experience all of that! The hand cramps (both hands), difficulty with writing, the curling nails (originally just my index fingers, now my middles have begun to as well)...I have all that and more.

Here's part of my story:
Around last fall, I finally became fed up with how I was feeling, how many new symptoms seemed to be cropping up, and with my primary doc not listening to me. I went through a round of docs and exams, including the EMG (I had one spot on my inner wrist that they also redid about 10-12 times, turning it up each time, with no clear reason), yet am still not sure what's going on. The only clear results were carpal tunnel (both hands), a myofascial pain condition, and a bulging cervical disk. All of these play a part in a lot of the random shooting tingly sensations as well as pain and odd pressure feelings in arms and legs. Osteoarthritis and bursitis have both been mentioned about various leg areas (rheumy #1 said osteo in right knee and rheumy #2 said osteo in the left knee). One doc asked me if I had been dx'd with fibro yet (no), and the words rheumatoid arthritis, lupus, and ms have been bandied about, but never dx'd or ruled out. Nerve neuro doc sent me to a diff neuro that specialized in Dysautonomia (basically a dysfunctional autonomic nervous system). Neuro #2, said yes, I have dysautonomia and that the dysautonomia is the cause for all of my symptoms (including the N, but that's another story) and I should eat better, exercise more, and move somewhere warm...and for more info on the dysautonomia, go to this site: http://www.dynakids.org/. I tried calling neuro #2 for a follow up appt, but was told he didn't need to see me anymore, neuro #1 knew enough to help me with it. I'm not too thrilled with neuro #2, so that could be shading my feeling about the dysautonomia dx, but I have a hard time with it when he didn't even run any tests (common dsyautonomia tests include tilt table and sweat test) for what is a fairly unknown condition.

Anyways, after various half answers and too many docs, I decided to give it a rest for a while. I did find some relief from the pain associated with the Myofascial through the graston technique (helps with pain trigger points I have in my back and neck), so that was a huge relief.

In case this can also help someone else with what they are going through, here's my quick health bio as well:
31 y/o female previously dx'd with N, IBS, Migraines, and Raynauds. Also a very lengthy family history of autoimmune conditions.
Random symptoms that led to my mini health crusade include: all over pain (from achy to stabbing and all in between), nerve issues (mainly in arms and legs), constant low grade fever, hair changes, loss of hand coordination and grip, and a spike in my N symptoms...plus pretty much all of the stuff Nyx mentioned.

Many of the symptoms had been progressing over the years, some I have had for many years and either thought were normal, or too trivial to mention. I was also very concerned about dealing with hypochondriac claims. Seems to be a lot of us pwn's with that concerns...doesn't help that most pwn go through many docs dismissing their N symptoms before dx...it's hard when a doc tells you that you are just lazy!

To respond to the content of this thread (I know I went a bit off track, sorry!), I haven't done enough research to back anything I feel with medical knowledge, but I have a difficult time believing N isn't neurodegenerative. I have personally felt the effects on my cognitive reasoning, speech, memory.......................oh yea, and my ability to focus. (ex: this post took me almost 45 mins to type)


Wow! You gave me a TON to research. I started reading up about dysautonomia yesterday, and it was incredibly enlightening. From the quick review I've done so far, it seems to impact women more than men at a 5:1 ratio, and tends to start in adolescent years. And it can be familial, especially in Ashkenazi jews. Symptoms vary ENORMOUSLY, and they tend to present intermittently and have no real physical causation, so many people never get diagnosed because their doctors don't believe there's anything wrong with them, and those that do get diagnosed spend years to get there going from doctor to doctor. Here's the problem though. It's not really a diagnosis, and there isn't much they can do. Basically, all they're saying is that you are having symptoms/problems, that there is no functional cause, and that they believe that it's actually an imbalance in your nervous system response or functioning. So, one of the key points to this "diagnosis" is that they've ruled everything else out. Also, there tend to be periods where you're absolutely healthy and perfect between these random episodes - at least for most people. There are apparently MANY different dysautonomic categories, basically depending on what they see happening. For example, there's even something called "cyclic vomiting syndrome." Anyway, it's basically a whole world of confirmed physical problems that they can't find a cause for, and they believe is a nervous system malfunction. There are some exceptions though, where they've done some good reasearch already and found certain dysautonomias that they can test for by looking for certain deficiencies or overproduction of some neurotransmitters (i.e., dopamine). Looks like Vanderbilt has a LOT of research and a good dysautonomia department.

Disordered, I'm dying to know what your doctor said about how exactly the dysautonomia is causing your narcolepsy. Personally, I now believe that narcolepsy is just a symptom, like diarrhea (or "irritable bowel syndrome" which is just an "idopathic" catch-all for when they don't know why GI problems are happening), and that it's NOT a diagnosis. I think that everyone has "secondary" narcolepsy. I.e., SOMETHING is causing it. Whether it's trauma to the brain, a sclerotic MS plaque, auto-immune damage, some other neurodegenerative disorder like parkinson's, a genetic mutation that causes the inability to produce hypocretin or produce the hypocretin receptors, etc. SO, it absolutely could be an autonomic disorder too. It could be anything and everything that we all have, but presumably, some causes are probably more common than others.

Now, I'm betting if it is dyautonomia, there's pretty much nothing to be done for it - at least for now. But I'd love to know what your neurologist said. Did he think it was something that was interfering with the proper production of hypocretin? Did you have a CSF test to see how much you had?

#36 Stacy D

Stacy D

    Member

  • Members
  • 40 posts
  • Gender:Female
  • Location:Maryland
  • Interests:Conspiracy Theories

Posted 12 September 2009 - 09:05 PM

Wow! Thank you to those who have shared all your other symptoms. I have experienced most of what you described over the last 15 years or so. I've had IBS symptoms the longest and always attributed it to anxiety even though it flares when my meds are working and my anxiety doesn't feel too bad. I also stiffen pretty easily; long car rides are the worst. My hands cramp pretty quick if I'm holding anything. I've always been clumsy, but lately it seems I lose my balance easily, even if I'm just standing still. For the first time in my life I had some sort of skin rash flare a few months ago that may have been eczema and I frequently get mouth sores and tongue swelling that are not cold sores or canker sores. I had a chest x-ray which I assume was to check for Sarcoidosis but it came out fine. My extremities also get cold and fall asleep easily. My legs will fall asleep sometimes when I'm just sitting normally.

Nyx, it's funny you mention the overheating thing. That's one thing that's puzzled me for years. I overheat really easily but have NEVER had heat stroke or heat exhaustion no matter how hot I feel. Sometimes I just heat up for no reason and a hot shower can set it off to the point where I am sweating when I get out. I have a hot tub and it's great to help my muscles relax but I will sweat while I'm in there. I've just always thought it's because I was born in Alaska, my body just can't handle heat.:rolleyes: My muscles turn to jelly the moment I start exercising (when I used to exercise). I'm not sure what you mean about your fingernails curling, but mine are very thin and have ridges and no visible lunula. I always read that the ridges were caused by injury or illness, but I've had them as long as I can remember. The no lunula thing is kind of odd too because they used to be there, they just disappeared over time.

Some of these things have been around a really long time and some have shown up in the last year or so which keeps me wondering, "what next?"

I take Effexor for anxiety and Adderall for EDS. The Adderall is becoming less effective over time which concerns me a lot. I don't take it every day but still seem to be building tolerance (or my symptoms are that much worse). Some days I actually wake up feeling ok and try to get through the day without it, but then the EDS kicks in and it's too late to take the Adderall. I could kick myself when I do that because I should really know better by now.

I keep messing up when I pay with my debit card and you have to use the little screen. I know how to use the stupid thing, but the instructions on the screen don't make sense anymore. Today I stopped at a green light (I actually do it all the time) but at least my husband was with me to tell me it was green. I think I'm going to need to start wearing a sign that warns people about me, "WARNING: DEMENTIA SUFFERER". My husband keeps joking he's going to get me a helmet. Tasteless, but it's humor that gets me through the day.

Random last thought: At least I can ramble here and people understand. I, likewise, understand that people cannot read my long ramblings.