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#1 pinklady72191

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Posted 08 December 2013 - 07:43 PM

Hi,

 

I'm new to this forum, and also new to sleep disorders in general. I'm here to share my life story with all of you, hoping that you can shed some light on my situation.

 

As long as I can remember, I've been tired. All day, every day. I nap a few times daily, and then sleep a full 10 hours every night. My mother always brought me to the doctor about my "chronic tiredness" and they would say that nothing is wrong. I've had blood tests done for anemia and tyroid problems every year of my life to make sure nothing is wrong with me. At some point, I decided that it is normal to be tired. I joined the military, and just pushed on. I brought up my issue again with a military doctor, who told me it was all in my head. The next doctor told me I was depressed and put me on Prozac and Welbutrin. These antidepressants don't help my tiredness at all. I feel happy all day, but I'm still exhausted.  

 

After reading through this forum, I have realized that constant tiredness is not normal. I went back to my doctor, and had her give me the Epworth Sleepiness Scale, score of 21. The doctor thinks I have Sleep Apnea, since I sleep so much and never feel well rested. She also took into account that I had a sister die of SIDs. She sheduled me for a PSG, which sadly, won't happen until mid-January. She didn't even mention Narcolepsy, which worries me. After reading on this forum, I feel like my symptoms are more in line with Narcolepsy than anything else I've read. I read everyone's posts about their various symptoms, and find myself constantly thinking, "I do that too!".

 

Is it bad that I want to be diagnosed with something, ANYTHING, that can explain why I can't lead a normal 22-year-old's life? I have a great job in a Marketing department, which I love, but I can't concentrate during the day. I have to write everything down in meetings, and then I forget where I put the notes! My boss and coworkers get frustrated with me, because my short term memory is really poor. I can't go out on the weekends with my friends, because I fall asleep in bars and clubs. I can't go to the movies with my husband because I fall asleep. I just want, (need) something to change.

 

If anyone has any advice on relieving my daytime exhaustion while I wait for my overnight PSG, please share it. Also, if the PSG comes back normal, should I request an MSLT?

 

Thank you all for reading this, and I hope you have a wonderful day!



#2 b.chrissie@yahoo.com

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Posted 09 December 2013 - 11:52 AM

First of all, wow! Kudos to you on surviving the sleepiness in the military! I don't know how you did it. And thank you for your service!

 

Even after having a diagnosis, the process of controlling the sleepiness can take a very long time, from what I have read. I was diagnosed in June and still haven't found the right mix of therapies yet.

 

You may want to talk to your doc about doing the MSLT at the same time as your other test since you will be all hooked up anyways. That way they can check for both at the same time and you will not have to go through it again.  I did both at the same time and I am glad I was able to. Don't get me wrong it is a long day but it was totally worth it.

 

Good luck with everything, I hope it goes well. It is so difficult to be so exhausted all the time and have no one understand or just say "yeah, I'm pretty tired too." This forum has been a savior for those reasons so I hope you find solace here too. Keep us posted!



#3 ruthie s.

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Posted 09 December 2013 - 12:06 PM

That sounds just like me - I've been to doctors and had blood drawn at so many points for this constant sleep thing for 20 years! All I got was vitamin B shots, prozac- and then 10 years ago, a diagnosis by psychologist for ADD- which led me to Adderall and changed my life!! Truly. The only thing was, it worried me that I was functionless without this medicine. So I recently went to the sleep clinic & now that the lifelong mystery has been unveiled as Narcolepsy, am just now beginning to treat the "core" of it. Only began to experience the downfalls of stimulant-only in the last few years, when I hit some stressful points and was getting LESS of my (now know: chronically bad-quality) sleep, meanwhile still zapping off the (apparently-NEEDED) nap time with the adderrall.

#4 pinklady72191

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Posted 09 December 2013 - 06:48 PM

First of all, wow! Kudos to you on surviving the sleepiness in the military! I don't know how you did it. And thank you for your service!

 

You may want to talk to your doc about doing the MSLT at the same time as your other test since you will be all hooked up anyways. That way they can check for both at the same time and you will not have to go through it again.  I did both at the same time and I am glad I was able to. Don't get me wrong it is a long day but it was totally worth it.

 

Good luck with everything, I hope it goes well. It is so difficult to be so exhausted all the time and have no one understand or just say "yeah, I'm pretty tired too." This forum has been a savior for those reasons so I hope you find solace here too. Keep us posted!

-----

 

b.chrissie, I survived the military by taking frequent naps. In bootcamp, I remember being yelled at frequently for falling asleep during Marine Corps history lectures. I would have to stand up to stay awake. Once I was out of bootcamp, I started napping every day during lunch, then going to bed immediately after work. My friends called it, "pulling a Greene" (Greene was my last name back then). I just e-mailed my doc about the possibility of doing an MSLT the same day as my PSG. I hope she gets back to me soon. The trouble is that I'm still being seen by military doctors, even though I am no longer active duty. It takes a lot to even get a referral to a sleep clinic in the first place. :(

You're right about people not understanding...I'm so glad I found this forum. Reading posts helps me stay awake. :)



#5 ABitColtish

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Posted 14 December 2013 - 09:11 PM

Is it bad that I want to be diagnosed with something, ANYTHING, that can explain why I can't lead a normal 22-year-old's life? I have a great job in a Marketing department, which I love, but I can't concentrate during the day. I have to write everything down in meetings, and then I forget where I put the notes! My boss and coworkers get frustrated with me, because my short term memory is really poor.

I totally understand how you feel. I am 19 and attending a very rigorous college, and was just diagnosed in August. To be honest, I was incredibly relieved to get a diagnosis, because then I had an explanation for everything. There are a lot of emotional/psychological issues that revolve around having a condition/disorder and not knowing that you do, because you feel inadequate and isolated. Everyone asks you "Why can't you do this?" "Why is this so hard for you when everyone else seems to handle it just fine?" It's really hurtful to have everyone constantly point out how normal you aren't, and not know why yourself.

 

I generally experience ESD, occasional hallucinations, and mild cataplexy (I briefly lose control of my jaw and tongue while talking), but as a college student, of course I am incredibly sleep deprived on top of my condition. I don't even party, I just have an overwhelming workload. And the extreme sleep deprivation makes my narcolepsy go out of control with collateral symptoms: daytime hallucinations, anxiety (my body shakes when I'm not cold, constant worrying, attacks of erratic breathing), depression, headaches and nausea, inability to wake up in the morning even after setting (literally) 15 alarms, mood swings, and increasingly strong symptoms of ADD/ADHD (short term memory issues, trouble staying concentrated, trouble focusing).

A couple of my professors got a little offended when I completely spaced out and had to ask them to repeat their instructions. I wasn't even mentally distant or internally distracted by other thoughts; I was literally gone, like all consciousness had completely left my body for two minutes. And it was out of my control. But knowing what was the cause of all this crap made it easier to explain to my professors, and I've gotten extensions on some assignments this semester.

 

I'm a military brat, so I totally understand the whole "Life sucks, get used to it and move on" mentality, but when my heart started physically hurting (like, I thought it was growing stretch marks or something) from exhaustion, I finally put aside the whole "don't feel sorry for yourself" speech and asked people to cut me some slack. Don't get me wrong; some narcoleptics have a handle on life and they can function like anyone else, but I understand that in some environments/lifestyles, it can really difficult to deal with. Kudos on your efforts so far and good luck. Go get that diagnosis.



#6 pinklady72191

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Posted 14 December 2013 - 10:14 PM

I totally understand how you feel. I am 19 and attending a very rigorous college, and was just diagnosed in August. To be honest, I was incredibly relieved to get a diagnosis, because then I had an explanation for everything. There are a lot of emotional/psychological issues that revolve around having a condition/disorder and not knowing that you do, because you feel inadequate and isolated. Everyone asks you "Why can't you do this?" "Why is this so hard for you when everyone else seems to handle it just fine?" It's really hurtful to have everyone constantly point out how normal you aren't, and not know why yourself.

 

I'm a military brat, so I totally understand the whole "Life sucks, get used to it and move on" mentality, but when my heart started physically hurting (like, I thought it was growing stretch marks or something) from exhaustion, I finally put aside the whole "don't feel sorry for yourself" speech and asked people to cut me some slack. Don't get me wrong; some narcoleptics have a handle on life and they can function like anyone else, but I understand that in some environments/lifestyles, it can really difficult to deal with. Kudos on your efforts so far and good luck. Go get that diagnosis.

 

Thank you so much for your words of encouragement, and for sharing your story. My family has been guilty of saying things like that to me...."Why can't you do this?" It's frustrating. I'm still overseas, so I don't get to see my family a lot...but when I do, I have to take breaks to nap. If we are having a family get-together, I schedule times to be away from them. I'm sure it hurts them too, as I only see them once a year.

I talked to my doctor (a general doctor) about the possibility of getting an MSLT done. She was very forthcoming in saying that she didn't have a lot of experience with Narcolepsy, and was happy that I am trying to be an informed patient. She agreed that having the MSLT done wouldn't do any harm. I can't get both tests done together, though, since my previously scheduled PSG is at a clinic that doesn't do MSLT...but still. I'm just happy to be listened to for once, instead of being prescribed higher doses of antidepressants. It typically only takes 2 weeks to get an appointment at the MSLT clinic I'm going to...I'll keep y'all updated!

 

Thanks everyone for your support...I'm so glad I found this forum, and to know that I'm not crazy or lazy. (hopefully, lol)



#7 ABitColtish

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Posted 14 December 2013 - 10:37 PM

Yeah I get you, I'm from California but I'm studying in Massachusetts. Luckily mom had a business trip in Boston and drove out to see visit me for Parents' Weekend in October, but I also had crew practice that morning and fell asleep during the day. :\  That's kind of the sad, emotional aspect of narcolepsy that a lot of people, even doctors, don't understand. You feel like you're missing a lot of life's important moments, just from being unconscious during the day. Luckily, prescription has helped me with that when I'm on a regular sleep schedule, but when I'm studying and really exhausted, I often fall asleep unexpectedly and miss meetings with my friends or spending time with my family. At the same time, I think it's helped me be lot of more comfortable with myself; teenagers/students/young people often get caught up in materialistic things or what others think of them, and just a bunch of other silly things that don't matter. For years I've thought, "Well, heck with this other crap. These are the people that matter to me and I'm just going to focus on them and what I'm doing with my life now, because I could very well pass out in the next ten minutes." lol



#8 b.chrissie@yahoo.com

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Posted 15 December 2013 - 09:28 AM

Good pinklady! I am so glad you are getting the MSLT! Keep us posted and good luck!



#9 pinklady72191

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Posted 26 December 2013 - 01:38 AM

Meh, my MSLT was cancelled. The organization that has to approve outside referrals said that I have no reason to have a MSLT. Welp. That throws a wrench into things. I guess I'll take all this as it comes...get my PSG done as scheduled, and go from there.

I hope every had/is having a very wonderful holiday season!



#10 Hank

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Posted 26 December 2013 - 09:46 AM

Meh, my MSLT was cancelled. The organization that has to approve outside referrals said that I have no reason to have a MSLT. Welp. That throws a wrench into things. I guess I'll take all this as it comes...get my PSG done as scheduled, and go from there.

I hope every had/is having a very wonderful holiday season!

Sorry for the monkey wrench.

 

Just so I understand- your main symptom is daytime sleepiness. You also mentioned memory troubles in relation to that. You also see evidence of those symptoms into your earlier years.

 

Has your husband ever complained that you snore or move around in your sleep. Are you a mouth breather or overweight.

 

What are the qualifications of the doctor who is doing your PSG?

 

If your PSG is negative for sleep apnea but shows fragmented and inefficient sleep, you want to have a doctor who will know what that means.

 

When you sleep during the day, do you ever have dreams or really vivid "thoughts".

 

Do you ever have falls or stumbles that you could not explain. Does it ever annoy you that your hands or legs don't work right. Do you ever laugh so hard that you cant keep your eyes open. When you get scared or startled, which do you do- jump or sink down?

 

Sorry for all the questions, but if you think about them and answer them, it could reveal for useful information.



#11 pinklady72191

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Posted 26 December 2013 - 08:23 PM

Hank, yes, my main symptom is daytime sleepiness. My memory troubles have me on a fast-track to unemployment right now, actually. I'm trying to hold it together...an excessive amount of sticky notes and phone reminders are helping out a little.

My husband says that I do not snore, and I am not overweight. Weight wise, I am 130 lbs, 5'3", musclular build. (I work out) Waist measurement of 28", hips 32". I never mouth-breathe during the day unless I'm sick, but I'm not sure if I mouth-breathe at night. I have an episode of "sleep acting" every few months...but other than that, I don't think I move excessively. My "sleep acting" generally consists of beating my husband while I'm sleeping. It's weird. The dreams where I wake up hitting my husband are always really vivid, but I'm pretty sure I dream every night. I wake up remembering them all the time.  

I wish I knew the qualifications of the doctor doing my PSG. I'm still being seen by military doctors, who are not qualified in sleep medicine. They are sending me to an off-base specialty clinic, so hopefully the doctor performing the test is qualified. He also will interpret it before sending it back to my primary (military) doc.

When I take a scheduled nap during the day, I typically dream. I nap for 30 minutes during lunch, sometimes 45. If I fall asleep at my work desk, it's more of a "dozing off"...my head bobs forward, and I startle awake. I don't dream during those.

I don't have falls of stumbles I can't explain - I do get bruises frequently, and can't remember where they came from. I'm not very coordinated to begin with, so I think that is my issue there. I don't think I've ever had an issue with my hands or legs not working right. I don't laugh, typically. I have a fake laugh I use in social situations, because my laugh is obnoxious. When I use my real laugh (at home with hubby), I feel really weak afterwards, and lightheaded. I don't think I have an issue with my eyes staying open, though. When I am frightened, I just stand there. I freeze.

Questions are no issue for me...I welcome them if they can shed any light on my life.



#12 Hank

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Posted 27 December 2013 - 10:20 AM

The weakness after laughing is something to discuss with your doctor as a possible symptom of Cataplexy.

 

When you say you are not very coordinated, is it all the time or sometimes. Are there ever times when you are coordinated.

 

From my own experience, understanding all of this took complete objectivity. I had applied and received so many labels to my symptoms that it was a real tangled mess.

I am not trying to place symptoms on you where there may be none- I just want to encourage you to observe yourself without labeling/ judging yourself.

 

For example, I could not catch a ball, a tossed pen or keys. I was embarrassed about it because I had noodle arms and thought I was uncoordinated. Otherwise I have quick reflexes. I later found out that "catching a thrown object" is a trigger for Cataplexy. Now, I see myself as a well coordinated person who sometimes cannot catch a ball because of Cataplexy.

 

For me, the labels that I placed and accepted actually got in the way of me accurately reporting symptoms. During diagnosis time, I met with a psychologist to try to make sense out of my constant struggle to stay awake; a possible connection between my clumsy falls and broken bones and emotional triggers; why I considered myself to be uncoordinated but had just completed a triathlon; why I considered myself lazy and tried so hard not to be.

 

Well, I learned that lazy people don't try hard to not be lazy. Even though I did not fall asleep during the day, it was not normal to fight so hard to stay awake. Before every bone breaking fall was a strong emotion- like thrill (skiing) or fear (for a child's safety).

 

You either have symptoms or you don't. If you have them, just make sure you know it.

 

If you really think that you may have Narcolepsy, then a night study alone will not lead to the answer.

 

If you have concerns that some of your symptoms are consistent with Cataplexy, and Cataplexy is a symptom exclusive to Narcolepsy, then testing for Narcolepsy would make sense. The MSLT is the test for Narcolepsy.

 

Unfortunately, we have to be well educated patients (I was not) in order to express our symptoms clearly so that the right tests are conducted.

 

I hope this helps- anything I have learned has come the hard way.



#13 pinklady72191

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Posted 12 November 2014 - 12:35 PM

I know it's been a while, but just an update: I had my PSG in February, nothing abnormal. The insurance would not approve my MSLT, so I didn't get to have it.
I moved recently, and my new family doctor thinks the MSLT would be beneficial! Thank goodness! Hopefully she can persuade the insurance company to allow it this time. This has been a long road, with many other disorders ruled out in the last few months. Sleep and my brain are all that's left to test. I don't have an appointment or anything yet, but fingers crossed that i can at least sit the test this time! I don't even mind that I would have to take another PSG...it wasn't that bad. Not the most comfortable bed ever, but I can sleep anywhere. :)

#14 Jai

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Posted 12 November 2014 - 01:31 PM

With a ESS of 21 you are pretty sleepy and if your PSG was free of RLS or OSA then I would hope your doctor can get an MSLT ordered for you.  I had to jump through a few hoops to get here.  I had to have a home sleep study first and it showed a few episodes of apnea and my doctor had to petition the insurance to do an overnight sleep study and MSLT.  It took a little while, but she was able to do it for me.   :)  Good Luck!!



#15 Lorax64

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Posted 14 November 2014 - 03:35 PM

Pinklady - good luck! Yep, my son's score wasn't as high as yours and his MSLT was blazingly abnormal - twice! Please keep us updated.



#16 pinklady72191

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Posted 22 January 2015 - 04:39 PM

Hi everyone! I had my second PSG and finally fought enough to get the MSLT as well. I don't know how either of them went. I do know that I'm consistently normal, or consistently abnormal, as they only kept me for 4 naps of 5 because they "had enough information". I know I slept for all 4, and I dreamed in 3. I would guess I fell asleep within 5 minutes for each nap, but I'll find out for sure tomorrow when I get the results.
Hope everyone is doing well!

#17 tscott

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Posted 28 January 2015 - 03:21 PM

I completely relate to you as well as Hank and Ruthie.  I was diagnosed with ADD by a psychologist and began taking Adderall and like Ruthie said, found it hard to function without it.  I've been "sleepy" for years but incorrectly described it as being "tired."  I was sleepy all the time, couldn't pay attention in class, kept forgetting things, slept through alarms, vivid dreams etc etc.  Similar to Hank, I never really fell asleep during the day unless I allowed myself but I was CONSTANTLY fighting sleep.  I have always been a highly motivated person but simply did not have the energy to do the things I wanted and needed to do.  Like Hank said, lazy people don't try hard to not be lazy.  I'm so glad you were able to get the PSG and MLST done and I hope they are able to find the cause of your sleepiness, whether it's N or some other problem.



#18 Della The Red

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Posted 29 January 2015 - 09:10 PM

agreed...there is a lot in the 'name' or wording.

 

I remember having a C attack with a little micro during a neurophsyche eval last year. My head flopped down on my chest and I lost a few seconds. When I lifted my head up again the chick doing the test asked me if I was sleepy. I said I would give my eye teeth to just be sleepy.

 

I thought the word 'sleepy' meant a nice feeling that normal people supposedly get when they are in bed and almost asleep. Not a word I would have chosen to describe the TIDAL WAVE of EDS that crashes on me.

 

Wish I had known to use the word sleepy instead, might have gotten this sorted out years ago



#19 pinklady72191

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Posted 29 January 2015 - 11:14 PM

Sleep studies came back with absolutely no concrete answers.

Here's all the info:

Overnight:

AHI 0.13 (below average)

Oxygen 96 - 98% all night

Efficiency 94%

ONE single apnea the whole night, which was central, apparently. Also below average.

 

MSLT:

4 naps

1: Sleep latency 12.5 mins, no SOREM

2: Sleep latency 7 mins, no SOREM

3: Sleep latency 7 mins, no SOREM

4: Sleep latency 8 mins, no SOREM

Average sleep latency ends up around 8.5 minutes. Those individual naps may not be exact, so don't do the math on them...I'm doing this from memory, because I've been replaying it in my head over and over again for the last few days. The 8.5 sleep latency is the correct number, though.

 

So, I had a PERFECT PSG, apparently it's almost identical to the ones in medical study books. Sleep cycles were exactly the right amount of time, spent the right amount of time in each, never skipped around.

 

My MSLT shows that I'm sleepy, but not sleepy enough for an actual diagnosis of IH, and no where near N. Doctor says, "You're sleepy, but we can't prove it". He also said, "There's something wrong with you, but it is not sleep related."

 

That being said, apparently, for everyone's safety, I need to be on a stimulant. We chose Provigil to start. I'm on my 3rd day, and feel better than I have in years.

 

Now the negative part comes out. I'm freaking angry about the results. If the study would have shown any kind of evidence, I could just take my Provigil, continue feeling great until that wears off then tweak things around  until we find a combo that works. Being forever on stimulants doesn't sound like a great idea, but I could deal with that, especially after knowing what feeling good can feel like. Here's the tricky part - without a diagnosis this will be my life: I'll have however long Provigil lasts, then I'll have to take a few weeks off to reset, then start the Provigil again. Literally half of my life will be the way it has been for the last 10 years. I'm selfish, because I feel so great right now, but I want more. Doc says that trying more medications is probably not an option, since I don't have an actual diagnosis of anything, and there's no proof that I need it. The insurance could probably decide that since I have  no diagnosis, that I don't need Provigil anyway, and they could rip it from under me.

 

I'm so frustrated, and so upset. How can I logically want to have a diagnosis? Do I want something to be wrong with me? Without it, what am I? Crazy? A hypochondriac? Lazy? Faking it? I don't even know anymore. I'm an emotional wreck right now. Hell, maybe I am depressed and need to be back on Prozac, although,  my last round of it showed no improvement in my overall energy, and I slept like crazy (usual for me), and napped...never felt refreshed...UGH.

 

The best part about being done with the MSLT/PSG? *sarcasm* I'm literally back to square one. Starting YET ANOTHER round of bloodwork in the next few days to see what could be going on. They're going to redo all routine blood work, and add in some extras that haven't been done, such as the test for Lyme disease. Then, after that, who knows. There isn't a whole lot left to test, unless we start going into the super scary crazy stuff, like Multiple Sclerosis and brain tumors.

 

Sorry for the rant. I've been bottling this in for days, because I really can't talk to anyone about it, and I haven't had the desire to talk until today.

 

I feel great, I'm so thankful that I finally got to see a sleep specialist. But, I wish that I could have left his office with a diagnosis. I should change my name to "selfishlady72191"...I know I'm more fortunate than so many people, it's just hard to see it all through the dark cloud that looms ahead.

 

Thanks to everyone for their replies and encouraging words. Hate to be a downer, but darn it, I'm down right now.



#20 purpley

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Posted 30 January 2015 - 12:58 AM

Pink, were you off all your meds for two weeks before the test?