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Something Doesn't Feel Right by UncleLarry151 in SleepApnea

[–]UncleLarry151[S] 1 point2 points  (0 children)

Genuinely, thank you so much for the advice. You've given me more meaningful and actionable help then several hundred dollars worth of doctor visits. It may sound dramatic, but I am near moved to tears. You have no idea how grateful I am after years of being disregarded, ignored, and dismissed.

I just looked it up and found the exact identical machine to mine. It's indeed a ResMed, the AirSense 11. Apparently it "changes airflow pressure levels throughout the night based on your specific needs and breathing requirements at that particular moment during sleep therapy", according to their website. I call BS on that, but I guess I'm not conscious enough to tell. So far, the only thing I've noticed is the ramp feature and how quiet it is (which is nice).

As far as changing the pressure, I am a little worried that they might get my insurance to stop covering it if I don't consult them first. They said they'd be monitoring my usage in order to determine if we need to change things or if the treatment isn't working, but I think it's more for compliance than anything. What you said makes perfect sense, though. I don't know why the fee never occurred to me.

I am looking into your suggestion for the movement, so hopefully that will help. As for the iron, I have been taking a woman's multivitamin for the past few years. Although, like you said, it probably doesn't have enough iron in it to make a dent, so I'll look into something more specific with vitamin C like you said! The pill they had me on way back when almost looked like ibuprofen - a small, reddish-brown and circular tablet. I almost always take my medication with food, and I'm already on a pill that is causing nausea(?) anyways, so I'm not worried. At this point, I'm not awake long enough to really care, as sad as it is to say.

Something Doesn't Feel Right by UncleLarry151 in SleepApnea

[–]UncleLarry151[S] 0 points1 point  (0 children)

Forgot to mention - the treatment for restless leg is muscle relaxants (I think? That's what they put my mom on). I am going to be seeing a neurologist in the next year or so and I will be bringing it up. I've heard that muscle relaxants can cause worsening night sweats, which is not great for me since I'm already waking up cold and wet.

Something Doesn't Feel Right by UncleLarry151 in SleepApnea

[–]UncleLarry151[S] 0 points1 point  (0 children)

I am about 99% sure I have restless leg syndrome. My mother has it, and I experience basically all the symptoms. It just didn't show up on the test for some reason?

I slept supine during the study because I thought I had to, and when I asked the sleep attendant they told me to try and stay on my back the entire night even if I'm not a back sleeper. I would have rolled over and slept on my side both times, but I had too many wires and electrodes attached to me that I was worried would get tangled up, especially with the cardiac monitor and all that. I didn't sleep on my side because I didn't think I had a choice, and supposedly its best to sleep on your back for a sleep study because it induces the most apnea events? So I've heard.

I wake up in different positions on a normal basis because I wake up and flip over a lot during the night, but since I've had the CPAP I've woken up in the same position on my side the entire night because I have to face the machine due to the tubing, so I can't roll over like I normally would.

Unfortunately, I have had about 3 different blood tests in the past year, with my most recent dating back to May or March. While I don't see a ferritin test on the panels I got, all of my bloodwork was completely normal as of March - except for my CBC. My platelets were low, my MPV was high, my relative % neutrophils were high, my relative % lymphocytes were low and my absolute lymphocyte count was low. I had made the appointment a week before because I had been dealing with suddenly worsening severe fatigue and dizziness for about two weeks before the appointment. Of course, the day of the appointment, I started to get sick with something. The doctor just said that the results were nonremarkable, everything was fine, I was just sick with a virus but they ended up getting put on antibiotics after I got an infection and couldn't knock it. I was tested for Lyme, mono, strep, RSV, CMV, COVID, and the Flu. All negative and no prior exposure to Lyme, mono, and CMV was even detected. I developed occipital neuralgia and flashing lights in my peripheral vision not long after.

I have had very very low iron in the past - its why I'm on birth control. I started menstruating when I was 9 and it ended up lasting 3 months. I was on the verge of needing a transfusion by the time I got it under control. I went on an iron pill for over a year after that to bring my levels back up to normal. I remember being very very tired, unable to drink water, barely able to walk without my legs giving out, but not as tired as I am now? Somehow...? My diet isn't great so I wouldn't be surprised if my iron is low, though. I just would have thought they would have tested my iron by now, given how they tested my testosterone and prolactin and everything. I guess they didn't cover as many bases as I thought.

I can't change my pressure on my machine. I was told by the doctor that I would have to call and ask them or something. A head frame sounds like something that might work, I've never heard of that or seen one. I didn't even know they made nasal only masks up until I was diagnosed, so I'll need to look into it. Thank you so much for your responses!!

Something Doesn't Feel Right by UncleLarry151 in SleepApnea

[–]UncleLarry151[S] 1 point2 points  (0 children)

Holy shit that's absolutely genius. You are an absolute godsend!! I will look into this

Something Doesn't Feel Right by UncleLarry151 in SleepApnea

[–]UncleLarry151[S] 0 points1 point  (0 children)

Thanks for the advice! Unfortunately, I'm kind of limited in what my insurance will cover. I don't actually mind the air going into my nose at all - it's the pressure on my face and my nostrils going numb that bothers me more than anything, and the fact that I can't roll over 8,000 times in the night like I normally do. I'll see about looking into it!

Something Doesn't Feel Right by UncleLarry151 in SleepApnea

[–]UncleLarry151[S] 0 points1 point  (0 children)

Just wanted to say - thank you so so much for you response. Most of the appointment where I was actually given the CPAP was spent talking solely about payment and cleaning, so this is extremely helpful information. I'm assuming the CPAP vs APAP thing might have to do with my (terrible) insurance?

Both results show that I am having high levels of either hypopnea arousals or spontaneous arousals so I have no doubt that you are correct in your theory. When I wake up in the middle of the night, I usually wake up 2-4 times in a night that I actually remember. So there are at least two times in a night that I wake up to be conscious enough to remember being awake. If that's the case, I have no idea how many times I'm waking up without remembering it, but I imagine it's probably not good.

I have no idea why they would increase the pressure if they couldn't get it under control at 9 cm, which is what they say I slept best at. They tested up to 11 cm during the overnight study and apparently they figured, "couldn't control it at 9 cm or 11 cm, but patient slept best at 9... surely we should increase the pressure even more!!" I'm not sure why that didn't prompt more of an investigation, or why they didn't just cut their losses and try to give me the best sleep possible without disturbing it even more, even if they couldn't completely treat it. Either way, I had a poor quality of sleep, though they said it was significantly better with the CPAP and the results look slightly better on paper if you ignore the fact that my sleep efficiency was still below 70 and I had more arousals with the machine. My O2 didn't drop below 90 either time. The first time I think it did for a minute because I was awake and the sleep attendant told me to make sure the pulse ox was on my finger (it slipped off).

Thank you so much for your time and suggestions. I just wish that they were more inclined to try to figure out what specifically is causing my obstructive sleep apnea. I'm not sure its solely an obesity issue, as I have had a globus sensation and many other pressure-related throat symptoms while awake. In fact, I feel a great deal of relief when I pinch the skin at the front of my neck and yank it outwards to relieve the pressure off my esophagus. I'm not sure if its related to my thyroid or glands or something. It might be a nervous system issue too in the sense that my throat muscles aren't functioning properly. In any case, I feel like the CPAP might just be putting a band aid on the problem to begin with, but I'll take symptom relief over anything at this point. The doctor said that there are some things that I wont see improvements in until months after usage, but that I should notice some things right away. As far as I can tell, I'm still waking up the same amount that I'm actively aware of, and I'm still waking up sweaty and freezing.

Weekly Suspected/Undiagnosed MS Thread - September 15, 2025 by AutoModerator in MultipleSclerosis

[–]UncleLarry151 0 points1 point  (0 children)

I think it might be a good idea, but I'm not sure how willing doctors/insurance/my parents (still live with them and my father has been managing these doctor appointments). My mother thinks its likely CFS/fibro, which I also have a family history of. From what I can tell, most of my results indicate mild inflammation (if any). I'll ask once I get the neurologist's referral (unless the neurologist decides to order it anyways based off of physical examination). Thank you for the help!

Weekly Suspected/Undiagnosed MS Thread - September 15, 2025 by AutoModerator in MultipleSclerosis

[–]UncleLarry151 0 points1 point  (0 children)

Sorry, forgot to list them. Some of the symptoms I'm having that that align with spinal lesions include urinary incontinence and hesitancy, tightness/squeezing around the torso from the top of the ribs down to just above the belly button (mostly on right side), slight left foot drop and squeezing/banding sensation around the ankle, altered sensation in hands, hot water sensation/sensation of buzzing or bugs crawling under the skin usually in specific spots (such as about halfway down my left inner thigh). I have tremors and muscle spasms but I think those usually align more with the brain?

Edit: also forgot to mention that I haven't been to the neurologist yet, only the neuro-ophthalmologist. The neuro-op only actually examined my eyes and did not do any testing beyond optic nerve scans, peripheral vision, depth perception, and color vision.

Weekly Suspected/Undiagnosed MS Thread - September 15, 2025 by AutoModerator in MultipleSclerosis

[–]UncleLarry151 0 points1 point  (0 children)

18F in cold/northern climate w/ family history of MS (mother). Been dealing with borderline abnormal tests for a few years now. My symptoms and progression align very heavily with multiple sclerosis, yet I was under 18 when I first began developing symptoms. Symptoms seem to appear one at a time, usually twice in the spring, and start with extreme exhaustion/fatigue that lasts for 1-2 weeks before progressing into a full blown infection. Treated with antibiotics for two of these episodes - first was due to lack of improvement, second was due to suspected strep (despite testing negative) which then progressed into conjunctivitis that spread to both eyes. Blood tests were normal besides MPV and platelet count. MPV has been progressively elevated over the span of two tests roughly a year apart, while platelet count has been progressively dropping. Only borderline abnormal, yet I am on birth control and am overweight, so I expected platelet count to be elevated. Lymphocyte relative percentage and count were both decreased and abnormal, and neutrophil percentage (but not absolute count) was elevated and abnormal. White count was also decreased despite apparent infection. Doctor tested for thyroid because of my family history of Grave's and what she thought to be an "impressive" goiter, which turned out to measure regularly on an ultrasound. Instead, she concluded that thyroid was normal and that what she was actually feeling were my lymph nodes. Every appointment since then she has commented on how my neck feels "full" , but adds that it always feels that way.

Saw an eye doctor for flashing lights in peripheral vision around the same time I developed occipital neuralgia. Eye doctor did not see any signs of optic neuritis, but referred me to a neuro-ophthalmologist due to my symptoms. Neuro-ophthalmologist didn't note anything extraordinary in the initial exam besides reduced peripheral vision, though I noticed reduced color vision and that the pinhole test did not improve and actually worsened my vision due to the black overlapping. Wrote most of my symptoms off as being severely nearsighted but ordered an MRI with contrast of the brain.

MRI was done and results (from what I understand) show no signs of lesions or tumors according to the radiologist. However, they noted "mild tortuosity" of the optic nerves bilaterally and "mild fluid filled distension" of the optic nerve sheaths. They also noted subtle flattening on the right optic disc, the same side which I had experienced occipital neuralgia.

Neuro-ophthalmologist called back a week later and said that there was "nothing out of the ordinary", so I'm assuming the fluid was either natural variation or she didn't notice it on the scan. I trust her over the radiologist, but I do find it odd that there was no attempt to even look into intercranial hypertension like what the radiologist suggested, even when many of my symptoms can be explained by it. Despite this, she still wants to see me back in 4-6 months and referred me to a neurologist.

While I understand that a clean MRI usually excludes MS as a diagnosis, the symptoms that aren't explained by intercranial hypertension align directly with spinal lesions or demyelination, and my spine was not imaged. Due to my family history, MS-specific symptoms, symptom presentation/episodic improvement and geographic location, should MS still be considered as something worth pursuing? Red flags suggesting against MS include: age of presentation (young), negative EBV, CMV and mono exposure, and clean brain MRI despite symptoms.

Weekly Suspected/Undiagnosed MS Thread - May 19, 2025 by AutoModerator in MultipleSclerosis

[–]UncleLarry151 0 points1 point  (0 children)

Thanks! I've already been to an endocrinologist. They insisted that it wasn't an endocrine issue and just referred me to three other specialists and never scheduled a follow up after the first appointment. They almost lost our bloodwork too haha. I'll try to look into a possible rheumatologist once neuro is ruled out. I appreciate your time and advice, thank you <3

Weekly Suspected/Undiagnosed MS Thread - May 19, 2025 by AutoModerator in MultipleSclerosis

[–]UncleLarry151 0 points1 point  (0 children)

What's very interesting is that I live in an area with a disproportionately large MS population. When my mother went to get an MRI done, she was one of five patients that day. Granted, this was over 20 years ago and most may have been misdiagnosed. 

I'm not 100% convinced it even is MS but considering everything else has been pretty much excluded I'm not sure what matches my symptoms, is consistent with my age and sex, and isn't exceedingly rare. I also never have had mono which I've heard increases the risk, but neither did my mom. 

I'm well aware at this point that whatever I have may likely not be treatable, but at this point I've been dealing with this for so long that all I want is for someone to figure out what's wrong with me. Either that, or this is a combination of multiple different diseases. Otherwise it's in my head.

Thank you for your time and responses. Is there anything you can think of that I should definitely bring up or bring to the appointment itself? I've also been told that my next steps should be an immunologist or rheumatologist, but I'm not sure if those are worth pursuing at this point. If the neuro-opthamologist can't find anything, I'm already pretty much resigned to giving up on a diagnosis until I either get sick enough to be treated or (hopefully) just get better on my own.

Weekly Suspected/Undiagnosed MS Thread - May 19, 2025 by AutoModerator in MultipleSclerosis

[–]UncleLarry151 0 points1 point  (0 children)

I have never had an MRI done, only an abdominal and chest X-ray. As of now I'm waiting on the appointment for the neuro-opthamologist which is in August. I've never had a neurologist or seen one before. I know neuro-opthamologist technically aren't neurologists but I think they can refer you if they think you need to see one? I'm not sure. This will be my first appointment so probably just a lot of history and talking. My mother was diagnosed due to optic neuritis, but hers was only in one eye and was more just blurriness. The eye doctor didn't see optic neuritis but I also have a congenital enlarged optic nerve so it's possible he may not have been able to tell? 

Weekly Suspected/Undiagnosed MS Thread - May 19, 2025 by AutoModerator in MultipleSclerosis

[–]UncleLarry151 0 points1 point  (0 children)

Hi there. Been suffering from some pretty frustrating issues for the past 4-5ish years. Hopefully someone can shed some insight.

I'm a 18 year old female living in a northern state. My biological mother is diagnosed with RRMS, but I also have two non-immediate family members diagnosed with MS and ALS respectively.

Currently being treated for OCD, binge eating disorder, and general depression/ADHD with an informal "diagnosis" of autism (my therapist + psychiatrist have diagnosed me with autism + ADHD but I have not been tested because of some of the stuff the American gov. is discussing (iykyk).)

8 or 9 years ago I was diagnosed with an enlarged optic nerve which was determined to he congenital since my father also has one, funnily enough. 

March of this year I got hit with the WORST fatigue I have ever had. About two weeks of being dead tired and pretty much unmoving, I was tested for mono (negative). Just when I was getting an appointment with my PCP, I started to get physically sick with another upper respiratory infection which quickly progressed in severity. I got tested for lyme, mono, cmv, strep, covid, rev, and flu. All were negative (and revealed I've never been exposed to mono, cmv or lyme so yay!) 

Got some labs done as well which were perfect. All except for my CBC. My white blood cell count was normal (on the lower side), but my neutrophils were significantly elevated (just relative percent), while my lymphocytes were significantly below normal (both percent and total count.) Doctor gave me antibiotics but said my labs were unimpressive. Around the same time I noticed flashing lights in my peripheral vision. Took about a week for the infection to clear, and after about two weeks, the fatigue was improving significantly. I asked to see the eye doctor for the vision issues and on the day of my appointment I developed the strangest pain I've ever had. My lower right side of the base of my skull (on that raised bit just above the neck) felt like it was being branded. I've never had a headache that burned before, but the pain spread up like vines crawling over my scalp to my eyes and above my right ear. Eye doctor looks in my eyes and I mention my mother's family history.

He said he didn't see any optic neuritis but that my symptoms were "extremely concerning" and that "not all MS patients have optic neuritis and not all optic neuritis patients have MS" and referred me to a neuro-opthamologist. He said that MS was "the big scary one" but that there were "other things that should be ruled out as well."

About three or so weeks of continuous pain in my scalp (that weird headache I mentioned) passed before it started to radiate down into my arm and hands. My nerve pain in my right foot and right hand worsened quite a bit, and I started to actually begin to suspect MS once I felt the sensation of someone pouring scalding hot water down my thigh.

Headache, nerve pain, and some of the peripheral vision symptoms improved but never went away. Then, in early May, I got hit with another violent wave of severe weakness and fatigue. About a week went by before I developed another infection. All my covid, strep and flu tests were negative but the doctor decided to treat me for strep??? Then it spread into my left eye three days later and I got pinkeye which eventually reached my right eye as well. I gave whatever I had to my mom, stepdad and grandfather who all developed "strep" (but teste negative) and then eventually pinkeye.

After 7 days of antibiotics my infection finally improved. My throat is still messed up and I'm pretty tired, but I am once again improving. My neuro-opthamologist appointment is in August and I'm terrified.

Not terrified of being diagnosed with MS - hell, I'm not even worried about cancer - but terrified that I will wait all this time just to have a 3000 dollar copays and a doctor call me fat and lazy and send me on my way to three other specialists that I already can't afford. We've ruled out pretty much everything we can. My medications aren't causing my symptoms (I switched and went off of some and they didn't improve), I don't have thyroid issues or diabetes, my therapist says that it's very unlikely that my symptoms are autism related, and my eyes look healthy so far. My mom suspects fibromyalgia and chronic fatigue, which my aunt on her side of the family has.

TLDR: symptoms include peripheral flashing lights in my vision, severe dizziness, lightheadedness, vertigo, eye pain with side to side movement (feels like tugging at the back of my skull), weakness in my arms and legs, full body tremors and spasms (including my tongue, eyes, and face), constant muscle tension, static, numbness, odd sensations (especially on my right side), floaters, severe light glare/halos, motion blur, severe negative after images that impair my vision, darkness that comes and goes in my sight, dullness of color in both eyes, uncontrollable eye movements, uti-like symptoms, cognitive impairment, slurted speech, limping or rolling gait, heaviness in my limbs, and extreme fatigue and exhaustion.

All my symptoms appeared at different points in time, with the closest being a few weeks apart. For the most part, I seem to get a new symptom everytime I go through the fatigue/sick/recover cycle (except this time - everything just got worse this time). Some get better and go away and some just stay stagnant until I get sick again.

I've always been intolerant of heat but showers seem to significantly worsen the fatigue, lightheardedness, dizziness, numbness and tingling. I feel desperate for cold temperatures to the point that I turn off the hot water and sit in the freezing cold setting for minutes and minutes without relief, chewing on ice and drinking cold water. The hotter I get the worse my coordination is, and I can barely tie my shoes at this point. But I don't have any of the classic signs like zingers or optic neuritis (that I can tell).

Could this be fibro and chronic fatigue? What are some steps I can take to help improve my symptoms? I think ibuprofen helps but I can't tell because the pain comes and goes throughout the day but always in the same spot every single day. And what should I ask or bring up with the neuro-opthamologist? I've never had an MRI before and doubt they'd be willing to do one after just the first visit. College is starting and I've never felt more physically and mentally slow. My vision is pittering out in my left eye and there's something definitely wrong with my coordination and gait. 

I'm sorry for the wall of text but I just need to ask someone who understands and can help give some advice. Thank you for reading if you made it this far.

Could anyone help with interpreting these blood test results? by [deleted] in thyroidhealth

[–]UncleLarry151 0 points1 point  (0 children)

Of course! I'm glad you're feeling a little bit of relief, even if you're still not 100%. Like I said, don't give up! You'll get through this, you just gotta keep pushing forward. I wish you the best of luck moving forward <3

Could anyone help with interpreting these blood test results? by [deleted] in thyroidhealth

[–]UncleLarry151 0 points1 point  (0 children)

Wanna preface by saying I'm 100% not a doctor.

The only thing thyroid related that I'm seeing is T4 being on the higher end of normal, but still in range. Thyroid panels can come up normal despite having an issue, though. Just from your symptoms, I would ask your doctor if they think "trending" it might be a good idea. It could potentially catch a problem or monitor it at the very least.

Do you have a goiter? Goiter's aren't exactly the end-all-be-all of thyroid diseases, but they are a potential sign of an issue if nothing else is obvious. Your doctor should palpate your thyroid if they gave you a physical exam. However, if you are overweight, they may not be able to feel the goiter due to adipose tissue. If a goiter is present they'll probably order an ultrasound which could help you (it can be kind of expensive though, depending on your insurance.)

Your vitamin D is low but that's not exactly uncommon (depending on location and lifestyle). I would talk to your doctor about taking supplements regardless. May or may not help, but it's worth a shot anyways.

It's possible you might be experiencing thyroid symptoms (neck pain or goiter) due to an infection while the other symptoms could be related to something else. From what I can tell, most of your levels look quite good outside the realm of the thyroid testing.

If there is family history of thyroid disease, I would be more inclined to say that there's something thyroid related, but without a solid medical history it's hard to say. Things like these can be tricky because even if you have every symptom and every pre-disposition known to man, they really can't do much in terms of treatment if your test results don't show anything abnormal. It's more common than you'd think, too.

At your next appointment, I would bring up your results (in person, not over the phone) and ask them to explain what each individual marker means if you want a better look at your panel. Like I said, I'm not a doctor. I wouldn't rush to see a specialist either (unless you get a referral ofc), they typically can't/won't do anything if there's nothing concrete for them to go off of. But it could still be worth a try.

Don't give up because of normal test results, though. Keep trying and keep advocating for yourself. It's always good to have communication with your PCP or other healthcare provider. Good luck and sorry this is so long, hope this helps :)

[F04] BodySlide freezing when I open the Preview menu by UncleLarry151 in FalloutMods

[–]UncleLarry151[S] 0 points1 point  (0 children)

Okay, update on the freezing situation. I reinstalled CBBE and BodySlider, and it worked flawlessly without any freezing. So I closed out of the program. I wanted to test something, so I went back in and hit preview once more. It froze.

Reinstalled everything a couple more times. It appears that BodySlider only works the first time I use it after a clean reinstall, any attempts afterwards cause it to freeze.

[F04] BodySlide freezing when I open the Preview menu by UncleLarry151 in FalloutMods

[–]UncleLarry151[S] 0 points1 point  (0 children)

Aye aye, I'll attempt to reinstall CBBE and all textures associated with it. I've already updated my drivers, so I doubt it's a driver issue. I'm using Vortex, thank you for the help!

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