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comfortzone

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  1. It may be worth investigating further .... the overnight pulse-oximetry test is an easy test to order and to perform... Whether by a hospital's pulmonary department or a durable medical supply company that sets it up - it's basically just wearing the finger-clip while you sleep - the machine then is returned to the hospital where they download the info and print out a graph with numbers. Some doctors do this as a test to see if a more formal sleep study may be warranted. Also the blood gas test is a blood test ~ mine done at a hospital by skilled clinicians who do them often - it can be a bit
  2. I'm not 'in the know' as to who he has with him in Chicago office ~ meaning who his main nurse or genetic counselor is that takes calls etc...when patients have concerns/questions. But it's a fine line he walks as consulting physician vs 'main' personal EDS doctor for you. I don't really even know if it is defined. So you have to 'use' him to suit your needs and follow your gut. So if you need to speak with him or get clarification you just have initiate that and do it. And keep on task to get your needs met. As far as follow up - he will either tell you in the dictation that gets sent to you
  3. I just have to say that the oxygen thing might be key for many of us who have sleep problems and pain and huge fatigue. I learned by use of two different nights of continous pulse oximetry tests. This showed desats to the 70's - over 124 desats per night and overall long periods of pulse ox readings in the 80's while asleep. A couple years back I had a sleep study that showed mild apnea so was ordered cpap - which I failed at - no one much cared of my docs as it was a mild case. BUT I still had desats on record and low pulse ox readings during the titration study for Cpap. I was concerned - b
  4. I have been a Dr. T patient for a few years now with only annual visits - not since he's in Chicagoland though ... that would be this summer but I never made the appt. Finances are sucky now. I love his ability to cut through BS like nobody's business even to the point of rather insulting other clinicians during our appt. He'll breeze through the studies I've had done at other big medical centers and say ALL the things I've been thinking unprompted ... I want to think of him as "The Shredder" - He'll say, 'why hasn't anybody followed up on this? why is this study showing this oxygen level? w
  5. I'm in the weeds with pulmonary things lately. Began with a quest to find reason for cognitive impairment - which lead to two overnight pulse oximetry studies, which lead to finding I spend a lot of my sleep time in the 80's rather than desired at least 90%.... Had failed cpap 2 years ago - but apnea was mild so didn't think much of it - neither did the pulmonologist. Next I told the guy about memory, fatigue, pain and slowly rising TCO2 levels on my every 3 to 6 month lab profiles (part of electrolytes) ... from 28 up to 31.... I asked for blood gases and low and behold they were what I'd
  6. Sounds like its time for a sleep study .... Could be some obstructive apnea or central apnea or a mixed disease of hypo ventilation and sleep disordered breathing - some have both types...complex issues... It can cause fatigue, cognitive impairments and poor sleep puts you at high risk for serious heart issues and other things like strokes....maybe an overnight pulse oximetry test would be a good start to see if your desat'ing in the night - just the finger clip thing... I am in the midst of all this stuff myself - feel better!
  7. Used a Blendtec for 2 wks & returned today....(BB&B w/ 20% off) - went to Costco today and got the 5200 Vitamix for $379 instead. It feels huge compared to the nice compact Blendtec - but I had a weird leak issue with Blendtec - so it had to go. Vitamix was about $50 bucks more but I doubt it would ever leak out the bottom. I use a fresh squeezed lime for nearly all green smoothies to brighten the taste...plus add chia, flaxseed meal & brown rice protein powder too sometimes. Bottom line I am not getting any younger and a machine that purées could come in handy (hope not but
  8. Hi. I have SFN & itch like crazy. The vascular docs thought it was varicose vein related but I do not. I recently clawed myself up all over and was put on steroids to make this rash that developed go away...I hate prednisone but I was bleeding everywhere from scratching so had to do it. Not hives though...just itchy skin on legs that gets red dot like bumpy rehash then itching spreads like wildfire!
  9. I know on my sleep study I had a few dips down to 72% or maybe it was 79% can't remember - and then back up to the mid 80's... when they titrated for cpap - I guess all was normal. I wondered why it would be that low - if the end result was just "mild" sleep apnea - and the pressure number for cpap was low - again can't recall but think it was 4. I had claustrophobia and after 3 mos of trying - had to quit the cpap. The respiratory therapist said he couldn't believe they even put me on it as the pressure was so low anyway - so I quit using it. I have horribly distressing cognitive issues.
  10. I fully encourage dabbling on any site you feel like dabbling on. I am too in full support of learning through books, videos and any other means available like medical libraries. I dislike policing of who should go on this site and when and who should go on that site and when. I understand that suffering is suffering and as much as people may like to compare and some even 'wear' their dx like a badge of courage to me it's 'all the same' - a human suffering is just that. So in this day and age whether you spend your money on insurance copays or entirely self-pay - whether you 'have' this or
  11. Just throwing this out there - maybe you'll find as I did at Mayo that I didn't even need to be offered a work up for mast cell stuff ~ the doc simply asked if I did much flushing - I said my whole life there's been times where I did and times where I didn't - but yes I am familiar with it - then menopause came and went - I get flushing still - but the cause I am clueless too. But as I have EDS, OI, SFN, baseline of sinus tach and problems with functioning/fatigue and cognitive issues - was offered the treatment for Mast Cell stuff. No mention of more labs, or 'causes' if it is Mast Cell - no
  12. We are the one's that are having our issues with health and so we see things through that lens - that does not mean we are self centered and heartless. The thing that gets me is that we have to seemingly cater to or tip toe around 'others people's feelings' and lives because of our own weaknesses that are just part of being human. So when I feel the worst is when I have to pull it out to do my 'explaining' in a way that helps the person not to feel slighted. Over the years I wonder then am I just simply too sensitive. Like should I just be short and sweet and not care so much what others t
  13. If you taper with a doctors blessing that's great. There are couple well known taper regimen's on the internet from fine psychiatrists as well. The thing people need to be aware of is that the tapering way of discontinuing the drug from long term use is not optional. There's been cases where people stopped the med cold turkey or with a daring taper and thought they were off scott-free from any symptoms - till about day 11 if you can believe it. The half life is so long that some people do not begin to even get withdrawal symptoms till that late in discontinuing it. At day 11 with the shak
  14. I had it twice in one night about 3 years ago. I will never forget it - it was violent shaking - I forced myself awake out of what seemed like a dark scary place dream at the bottom of a cyclone or some such thing - but the violent shaking persisted after I was fully aware of my surroundings and then left in an instant - I lived in earthquake territory so ran to my computer as I was sure this was at least a 6.5 ~ but there was nothing on the shake map at all - so I was freaked but went back to bed - a little while later once asleep that same violent shaking happened again - scariest thing eve
  15. Brain fog, early dementia, mild amnestic cognitive impairment, whatever you call it - I don't want to "forget" important ?'s for my doc tomorrow.... Do you have questions I should remember to ask? Studies/tests I should get? Things I shouldn't discuss? Things you always wanted to know? I am sorta embarrassed as every time I see my doc I am worse than the time before.... My sx's are ranging from varied "itis's" & EDS pains, labile b/p, hyperandrenergic baseline, on clonidine, propranolol for that, multi level severe cervical foraminal stenosis, mild central canal issue w/ cord flattening
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