dormir

Anxiously Awaiting Results Of Psg And Mslt

74 posts in this topic

It turns out the doctor has been trying to contact me, but I think he has the wrong number. The nurse called me to tell me after I left a voicemail about the results yesterday. She won't give me the results over the phone. She gave me another number to call to talk to the doctor, but it sounds like a general voicemail. I left a short message there with two different phone numbers and I'm hoping he will call soon. Yikes!

munky:

Maybe you aren't sensitive to multivitamins and that's okay! I just suggested it because some people are, plus it seems like some doctors try to find every excuse that a person isn't sleeping well instead of treating it. :)

Share this post


Link to post
Share on other sites

I still haven't had a return phone call.   :(  I'm know I'm being an anxious drama queen, but it is hard for me to wait.

 

I'm going to the hospital on Monday to apply for financial assistance and I'm thinking about dropping off my sleep journal, medication list, and sleep habits list for the doctor in the sleep study wing.  I'm pretty sure that I can't get in a quick visit with the doctor then so maybe dropping off that stuff would be good?  Maybe not...I don't know!

 

I'm probably going to call the nurse and let her know I will be at the hospital for something unrelated and maybe I will ask if that is okay if I leave that stuff for him.  The hospital is far so I want to make my time there count as much as possible.

Share this post


Link to post
Share on other sites

I just got the bill from the neurologist with the sleep study on it. $425 for the PSG and $500 for the MSLT. My insurance paid $23. WTF?! Thankfully, they aren't charging me the full remaining amount. They took most of that off as "adjustments". So, with the two office visits and two tests, I'm only getting billed $500.

 

Never thought I'd say "only $500", but seeing what it would've been otherwise ... ugh.

Share this post


Link to post
Share on other sites

Wow, might be worth it to contest that

Share this post


Link to post
Share on other sites

I have bad news.

 

The sleep study was inconclusive.   :(

 

I didn't get a full follow up with the doctor today, but he was nice enough to talk with me for about 7 minutes about what was going on.

 

I woke up a lot and fell asleep for 3 of 5 naps, but in the naps, never got to REM.

 

 

 

 

I choked up and told him that my entire life I have been called crazy, lazy, and/or demon possessed and he said I am not demon possessed.   :)  Thank you, I know.   ;)

 

But, he said that people without narcolepsy can still have sleep paralysis, hypnogogic hallucinations, and vivid, interrupted dreaming/sleep.

 

I told him, I just want peaceful sleep.  I'm tired of dreaming and waking up from them.  I want restful, peaceful sleep.  I want to feel alert when I wake up.  I don't want to fall asleep in class or on trains or when I need to be taking care of my kids.

 

He said he can "make the dreaming stop," but didn't elaborate.

 

He said he wants me to go in for follow up anyway and wants me to try this watch that will monitor exposure to daylight, sleeping, etc.  The name of the watch was weird.  I think it started with an A.  Does anyone know what this watch might be called?  

Share this post


Link to post
Share on other sites

Hmm, at this point, it might be worth it to look elsewhere if you had no REM at all. Have you had a full blood work up done recently? There are plenty of hormone problems and vitamin deficiencies that can cause crushing fatigue. Additionally, it might be good to get tested for a few infectious diseases as well. Persistant mononucleosis, lyme disease, toxoplasmosis can all have latent effects of fatigue, as well as other neurological signs. Finally, if none of that pans out, I would make an appointment with a neurologist to rule out MS and the like. Take heart. If you don't have N, maybe you've got something that's actually curable!!! :)

Share this post


Link to post
Share on other sites

I am going to ask my doctor about another sleep study.  The big problem is not having health insurance, though.  

 

I know I have PCOS and the last time I had a TSH, it was slightly under the hypothyroid zone, but my regular doctor didn't want me to start anything.  The last time my iron was checked, it was normal.

 

I haven't had anything related to vitamins, though.  I do take a MVI regularly, but that doesn't necessarily mean I don't have a deficiency.  I will ask my doctor next time if she thinks that woul dbe a good idea.

 

I had a mono test recently and it was negative.  

 

I have never been tested for Lyme disease or toxoplasmosis, though.  Those are some good ideas.

 

I wonder if I could get referred to a neurologist through this county hospital.  I'm going to ask my doctor next time.  

 

I'm trying to take heart!  :)  I just want to stop dreaming and feeling tired all the time, though.  The dreams...the dreams.

Share this post


Link to post
Share on other sites

I'm trying to take heart!   :)  I just want to stop dreaming and feeling tired all the time, though.  The dreams...the dreams.

 

I can't think of anything to add to what DeathRabbit said. I know more tests are very discouraging, especially with no health insurance! But you'll get there. And you've always got shoulders to lean on here while you're working through it all.

Share this post


Link to post
Share on other sites

To have your support in this time is amazing.  I'm feeling sad, mad, and confused.  I wanted resolution.  Clear answers.  I'm sure I will move through it, but today. :(

 

Today is not a good day...or maybe it is, like DeathRabbit said.  I don't have neurological symptoms of MS or parasitic diseases, but you never know, like he said.

 

I found the watch the doctor was talking about.  It is call an actigraphy watch/just actigraphy.  I don't know how I feel about this, but I guess I'm willing to try anything.  I'm going to hold him to his semi-promise of making the dreams go away, though.  Nothing would make me happier.  It just feels he is looking elsewhere, to like circadian rhythm disorders or something like that.

Share this post


Link to post
Share on other sites

It sounds like more testing is advisable.  There are a lot of possibilities besides narcolepsy.  However, lack of SOREMs on the MSLT does not negate the possibility of narcolepsy.  I had no SOREMs on mine and due to my sleep latency and cataplexy received the narcolepsy diagnosis.  The sleep study was the last test I did though so everything else had been ruled out.  I wish you the best in your persuit of answers.

Share this post


Link to post
Share on other sites

I'd like to be tested for a few more infectious diseases tbh, just because I have a recurring high white count. However, I'm not likely to be taken seriously if I request it outright. Perhaps I could lead my GP into doing it by playing dumb and just asking leading questions.

Share this post


Link to post
Share on other sites

It sounds like more testing is advisable.  There are a lot of possibilities besides narcolepsy.  However, lack of SOREMs on the MSLT does not negate the possibility of narcolepsy.  I had no SOREMs on mine and due to my sleep latency and cataplexy received the narcolepsy diagnosis.  The sleep study was the last test I did though so everything else had been ruled out.  I wish you the best in your persuit of answers.

 

 

How many naps did you sleep?  How was your PSG?  

The cataplexy doesn't haven't very often, but I don't think he believed me when I brought it up a few days ago.  I mentioned it in my original consultation because he asked about it, but didn't connect all of the times it has happened until recently.  

He didn't completely write off narcolepsy, but he definitely seems like a textbook narcolepsy type of doctor, though I still hold out some hope he might not be.  He was pretty confident in the initial consultation it was probably narcolepsy, so we'll see this.  

 

 

 

I'd like to be tested for a few more infectious diseases tbh, just because I have a recurring high white count. However, I'm not likely to be taken seriously if I request it outright. Perhaps I could lead my GP into doing it by playing dumb and just asking leading questions.

I might try this, too.  My next regular doctor appointment is early February so not far off.  

Share this post


Link to post
Share on other sites

How many naps did you sleep?  How was your PSG?  

 

I fell asleep 4/4 naps.  I slept seven hours on the PSG and had mildly fragmented sleep.  There really wasn't anything too out of the ordinary on it.  The reason I had started the process to find out what was wrong was that I was wobbling and falling.  Prior to the sleep study I had every blood test you can imagine, two MRIs, an EEG and an EKG.

Share this post


Link to post
Share on other sites

I've never had an EEG (outside of PSG that is to say) or an EKG. Noone has ever really actually tried to seriously diagnose me. It just feels more like I took a hop, skip, and a jump to N. I believe I have N, but could it be secondary to something? Who can say? Certainly not my doctors, cuz they didn't check.

Share this post


Link to post
Share on other sites

Sleepy:

 

you went through a lot to get diagnosed.  I hope your life is making more sense these days.  How are medications working for you?

 

 

DeathRabbit:

 

Do you want to get other opinions or are you comfortable with the diagnosis? 

Share this post


Link to post
Share on other sites

I'm not entirely comfortable with my diagnosis, but I'm tired of playign the Doctor hopping game for now. Just gonna try to knuckle down for the next little while.

Share this post


Link to post
Share on other sites

I hope you get a diagnosis you feel is totally appropriate.

 

 

Do any of you have suggestions for me when talking to my regular doctor about what I know about the MSLT and the doctor wanting me to wear an actigraphy watch?  I don't know anything about the PSG and I don't know if they faxed anything to my doctor (I'm guessing no) so we may not be able to talk about the entire sleep study.  

 

 

I'm wondering about the psych evaluation because I have been reading about nightmare disorders and so many of them tie back to schizophrenia or PTSD.  I'm almost 100% positive I don't have either or else I have had one or the other since I was a child.  

 

From what I understand about schizophrenia, it progressively gets worse.  My regular doctor is both trained in family medicine and psychiatry and I think she would have mentioned that by now, but I also don't want the sleep doctor to slap me in a psych disorder category especially if I don't have any disorders beyond what my regular doctor has already diagnosed me with (SAD and ADHD).  

 

I definitely do not believe I have PTSD because while I did not have the healthiest of childhoods, unless I have had PTSD from the beginning of time, nothing major to trigger PTSD by the age of 6 has happened to me that I can recall.

 

 

Do you think it's worth asking about both seeing a neurologist and possibly getting a psych exam?  Do you think it's worth mentioning the what I feel may be cataplexy even though the sleep doctor doesn't seem to buy the stories?

 

 

I also don't consider my dreams nightmares, just extremely vivid, bizarre, interrupting dreaming.  I very rarely wake up in fear and can always fall right back asleep.  I don't have problems differentiating between reality and dreams.  I now know how to deal with the HH and SP, though I would like those to go away.

Share this post


Link to post
Share on other sites

It seems like Psych diagnoses can be a bucket doctors turn to when they're stumped. IE: I can't find why you are having issues so it must be all in your head.

Share this post


Link to post
Share on other sites

I saw my doctor today.

 

She reassured me that I am not schizophrenic and kind of hinted that any diagnosis similar to that would be completely wrong.  With her being a psychiatrist, she said she would have said something by now had she suspected something like that.

 

I asked if she thought a preemptive psych evaluation would be worth it and she said no because she doesn't feel it would have any bearing for the sleep problems beyond the anxiety/ADHD/SAD that I have been diagnosed with.

 

She said I should wait until my follow up before she gives me a referral to a neurologist because she said that sometimes pulmonologists will do that themselves.  If I don't get a referral from him, then she said she would definitely give me a referral.

 

I told her what the doctor said about "making the dreams stop" and she was frustrated that he didn't say more about that.  She is requesting any of the sleep records that I have so far so she can review them herself.

 

My doctor increased my Ritalin dose strength, but I hate that Ritalin gives me a crash so I will have to play around with when/how to take it so the crash doesn't make me fall asleep.  I'm back working third shift part time and need to sleep right away when I get home which can be hard.  My job involves a lot of manual labor.  I definitely appreciate the energy and focus from the Ritalin.

 

 

I guess I feel a little bit better going forward, but I still don't know what will end up happening and I'm still having SP, HH, vivid dreaming, and EDS.  I guess since I have lived with it for this long, I can live with it some more, but I'm tired!  My follow up with the pulmonologist is in April.   :)

Share this post


Link to post
Share on other sites

I'm sorry you have to wait yet again, but at least you know you're on the way to figuring this thing out! It sounds like the doctor you saw today may be your best advocate, other than yourself, in getting things figured out. I don't understand why she would want to wait to see if the pulmonologist will give you a referral, but that may be normal procedure ... I have other neurological issues, so my primary care doctor sent me straight to the neurologist to rule those out, I never saw a pulmonologist at all.

 

Waiting is hard, I know, but compared to how long you've been dealing with it so far, this wait time is an eyeblink. Just try not to let it get you down. Remember: you're a step closer to figuring it out, and every step helps, no matter how long it takes to make them or how little you seem to find out.

Share this post


Link to post
Share on other sites

The hospital that I'm working through tends to go faster with referrals from and to hospital doctors versus an outside doctor referring a patient to the hospital specialist, she said.  I guess I will take her word for it.   :D  I don't really have any other options right now since I don't have insurance.

 

 

This is kind of off topic, but do any of you experience vertigo, usually when falling asleep?  I searched the forum and only found vertigo mentioned in a few places.  

 

 

I lose my balance a lot because I feel dizzy, but can re-orient myself quickly.  The vertigo I feel when falling asleep doesn't happen all the time, but I have had it my whole life.  

 

The sleep vertigo seems unaffected by medication.  The daytime dizziness/balance issues may be related to medication, but I'm not sure.  

 

The Ritalin sometimes makes me feel lightheaded, but that is usually if I take it on an empty stomach.  I have been taking metformin for about four years and the dizziness/lightheadedness didn't start until the past year or so.  I sometimes feel dizzy when I'm sitting down, too.  My husband has noticed me losing balance for no apparent reason, too.  I will usually lose balance or feel weak in the legs when I'm standing on both legs, not moving anywhere.  I don't know why it happens when I'm sitting.  It isn't like I'm spinning around or standing on one leg.    

 

 

 I just never thought to mention it to a doctor.  For so long I have believed these sleep problems are all in my head (and have been told that since the beginning), but now I'm realizing, that maybe they're in my head, but it's not because I'm imagining things.  I wonder if there is a legitimate problem.  

Share this post


Link to post
Share on other sites

This might be something you've already checked, but the fact that your on metformin makes me think that maybe your blood sugar levels are going too low? Have you even checked your blood sugar level at the times you are feeling dizzy?

 

The other thing that would be good to check, is to get your doctor to do a lying/standing blood pressure, as blood pressure can change in different positions, which can cause dizziness. Low blood pressure often causes dizziness, but even it is not particularly low, the change can still cause dizziness sometimes.

 

Having said that though, I do get dizzy at lot too, but I've always put it down to being related to my migraines (which is a common cause of vertigo) or being sleepy- like feeling dizzy is my brain's way of telling me I need to sleep right now (But haven't heard of that being a medical cause, it's just what seems to happen to me).

 

The other common cause of vertigo is Ménière's disease, which is an inner ear problem that can be caused by an autoimmune reaction. Different Autoimmune things seem to happen together, so just speculating, but there could be a link to narcolepsy there? Maybe have a look at http://www.menieres.org.au/symptoms.php and see if that matches up with your symptoms.

 

I too was told for a long time that my sleep problems were "in my head", so I know the hesitation of bringing up more things that might be "just in your head"- but your doctor seems really nice, so I think it is worth mentioning it to her, even if it is just for re-assurance.

Share this post


Link to post
Share on other sites

Thanks for the reply!

 

 

Dizzy Gillespie:

I have definitely considered metformin being part of the dizziness component.  I also tend to have low blood pressure so this could be another dizziness component.  

 

 

The vertigo I feel at night has been with me my entire life.  I came across the Menier's disease, too, and a lot of it makes sense.  I never attached the loud ear ringing that happens usually simultaneously or immediately following the vertigo before sleeping, but I definitely think they're connected now.  The loud ear ringing will also happen when I get a dizzy spell during the day.  It is extremely loud ear ringing.  I have allergies, so if I really have Menier's, that could be the culprit or part of the culprit.  

 

 

Now that I'm thinking more about it, the weakness/need to sit/numbness/knees shifting (and very rarely leg collapse) I sometimes feel with laughter or upset has a different head feeling than the vertigo dizziness.  I feel an urgency to sit, but my head feels heavy versus feeling light when I feel the vertigo.  I don't know if that is important or if I'm making sense.  

 

 

nap time:

 

I took a nap today and it was like everything happened at once:  I had to sleep at that moment, I had nightmares the entire time I slept (I had 3 or 4 very vivid nightmares or bizarre dreams,all unrelated, and slept for about 1 hr 30 minutes), I had the weird vertigo/ear ringing thing, I had HH (although only one and I was really annoyed because it was also with SP), and really bad SP!  I haven't had SP that badly in a long time.  

 

Now that I know it is SP, I don't get scared, but I was getting slightly concerned this time because I couldn't get out of it as easily as times past.  I normally go back to sleep to try to get out of the SP, but every time I would do that, I would wake up again quickly, still unable to move.  I hadn't taken any medication in over 12 hours or eaten anything within 3 hours so it was pretty bizarre. 

 

I sometimes notice that the less sleep I get at night, the weirder/more horrible my naps tend to be.  This isn't always the case because the last time I kept a sleep journal (before the sleep study), I was sleeping at regular times and I still averaged about 3 episodes of SP and/or HH a week.  The vivid dreaming and waking up was every night and that doesn't change no matter how bad or good my sleep may have been the prior night.  

Share this post


Link to post
Share on other sites

I caved and am on my very last "treating myself" thing that I can think of:  light therapy.

 

I am on day 2 and so far, nothing noticeable, but I am not expecting instant results, either.  I'm sitting in front of it right now because I work third shift tonight.

 

 

I don't expect this to help with the vivid dreaming, HH, or SP, but am hoping to get some relief with the SAD/maybe some energy benefits for the EDS.

Share this post


Link to post
Share on other sites

I am also anxiously awaiting the results.  I am worried because I did nap but most were at least 10 minutes into the nap but I did dream in all of them.  I have a hypnotic jerk that delayed one nap.

 

I was surprised that I did nap all three because especially the last three I wasn't especially sleepy until the lights went out.

 

I have been treated for IH for about 1.5 years but my night time sleep is horrible. Inspite of being asleep for over 8 hours every night I feel crushing sleep inertia.  If I take modafinil I get alert, for sure and can get ready but in about 1 hour or so I start to feel physically tired and anxious.

 

i think I had a cataleptic attack in front of the technologist but he thought it was because I just stood up and asked me if I wanted my blood pressure to be checked.  I couldn't argue with him because my ability to be coherent is compromised when it happens.

 

I asked my doc if my frequent sense of muscle weakness is cateplexy and he looked bewildered.  I took prednisone and it relieved the cataplexy.   I have had so many accidents in my life, I will have periods of time where I can't be in the kitchen because I drop knives and things.  I fall off my bike.  It happens usually if I am tired.  If I am alert, it doesn't.

 

I am a bit off kilter because all the things I did to hide the problem are still happening. I don't drive while I am tired (reasonable, right?) and so I don't make appointments at bad times, or too many in a day so then I arrive looking just fine.  But they don't know how hard it was to get ready or that I will go to sleep later that day.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now