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kafie

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  1. JimL, you're probably right. That one would probably go either to my immune system or whiplash from the car accident I was in last year. I kinda figured at least an optometrist would have a rough knowledge of pathology effecting the eyes. I could have sworn that she added a note about the ptosis to my chart, but it seems to have been lost when they switched over their system a couple months ago (ironically, the note about bilateral carpal tunnel (which I do not have and I was told was going to be removed from my chart) is still there). 😅
  2. Ugh. Yeah, probably. I'm seeing so many doctors now that... just... NOPE. I honestly don't have the energy to add another right now (it doesn't help that three of them I have to see every six months for blood work). The last neurologist I saw found bilateral motor neuropathy through my ulnar nerve and suggested an MRI of my cervical spine but my rheumatologist didn't think it was necessary. *Shrugs* If I ask for another referral my PCP just might explode at this point. (This is basically all my PCP does... well... and refill my antidepressant and prn nausea med) I could probably ask my optometrist about it, but I don't know what that'll do me. I guess this is the result of totally neglecting my health. 🙃
  3. No, but MG would effect the eyelid's ability to retract (mine retracts just fine), at least to my understanding, so it's nothing like that. Since the ptosis has been present for awhile now it's far more likely that it's connected to something more benign for me (I seriously thought I was just tired but it's there all the time now). I'd just love to know what it's from though. Feels like every couple of months there's something new and it's just bugging the heck out of me (my body could slow down, ya know)!
  4. The way I understand it, you can also have a milder form of POTS where the tachycardia doesn't happen everytime (this is how it effects me, I don't always get tachycardia when I stand, but everytime I get pre/syncope, I have Tachycardia (sometimes hypertension apparently, but not hypotension unless I pass out, at which point my BP tanks). I think for me this is because my POTS is connected to autoimmune, so the symptoms fluctuate - being considerably worse when my arthritis is flaring. There's also neurocardiac syncope. Obviously NCS causes syncope more, and I think this is generally no tachycardia or bp symptoms other than a full tank on BP when a faint happens. My guess would be that you have a milder form of one of these. Both can be hard to diagnose if the symptoms aren't consistent. It's still Dysautonomia though, just a lesser form. Most docs treat by symptoms not by the tests (though when my hr came back normal on a standing test my doc did take that as the treatment is working - my first standing test was a 40bpm increase). To my understanding, some people have a normal TTT and have an abnormal one later diagnosing either POTS, OH, or NCS (or a mixture over time). I did about a week of BP/hr readings and brought them to my doctor. He found this extremely helpful and told me that I had POTS, but a milder form due to the variations on hr readings.
  5. I was wondering if anyone else had any experience with this (since it can co-occur with Dysautonomia). Horner's is when one (rarely both) pupil does not properly dilate in response to reduced light along with a droopy eyelid and lack of sweating (on the effected side). The lag-time on pupil dilation is 5-15 seconds, so it's hard to spot (there are similar stuff that changes pupil constriction as well). Near vision isn't effected (and will cause the pupil to dilate properly), and the ptosis doesn't effect looking up (in that the eyelid retracts properly). It may also involve flushing or redness in the face and eye on the effected side (which I have off and on). When I first noticed it, I suspected cluster headaches (I do get really fierce headaches that fit the profile from time to time that nothing helps), but I'm seeing it even when I'm not having a headache. I guess swollen lymphs can press on the nerves or inflammation in the cervical spine (both are equally possible causes for me - I'm seeing an ENT soon to get my tonsils removed because they're a mess and I have symptomatic level 2 hyperplasia in all of my tonsils (palentine, adenoid, & lingual)) - but because there's connections to the basal ganglia and dysautonomia, I'm considering that maybe it's just the POTS? The defect is in my left eye, same side that I've had ptosis for a couple years (it does get worse and better though) as well as a spider nevus and a lot of symptoms of mild vasculitis along with psoriasis, so I have considered that perhaps it's related to the psoriasis in my mouth and thus vascular in nature (I have some huge varicosities in my throat... it's so incredibly multifocal at this point that I can't even make sense of it). On the bright side for me, this may explain why I have been experiencing poor night vision for the last year! Anyone else experience anything like this? Thoughts? Advise?
  6. Hey everybody! I recently ran across some interesting information that may help some of you guys. I know some of you suspect your Dysautonomia is connected to an autoimmune process and some have family members diagnosed with catch-all categories for their autoimmune illnesses. I couldn't remember who exactly I had talked to about wanting to differentiate psoriasis from fungus and other inflammatory conditions. I found a cool technique called Dermoscopy (looking at the skin/nails/blood vessels under a microscope). You can purchase a cheep microscope (about $10-$20 for a handheld, lighted microscope, $30-$40 for a USB microscope... You will need at least 10x magnification, preferably 50x... And 100-200xs minimum of you want to look at capilaries. This technique can aid in the diagnosis of: Dermatomyositis, Systemic Sclerosis, Sjogren's, Raynaud's (in differentiating primary from secondary), Systemic Lupus, Psoriasis (and PsA), RA (to a lesser extent, the pattern isn't super definitive from what I can tell... there seems to be two patterns that show up)... as well as show changes from diabetes, heart disease, and schizophrenia. It call also help to differentiate fungal infections from inflammatory skin conditions (like eczema and psoriasis but also lichen planus, rosasea, ect).... And a ton of other skin and nail conditions. Considering it's so inexpensive and takes about 1-5 minutes to perform... I'm surprised it's not used more often (especially since many of the signs are both very specific and sensitive (seen often in the condition and only seen in the condition)). Prep: acclimate yourself to room temp for 20-30 minutes. Nothing strenuous before, no smoking, no stimulants, ect, within that time (provided you want to look at the capilaries). Clean areas you intend to examine. For wet examination use coconut oil, petroleum (vaseline or mineral oil), or plain lube (like KY - which seems to be what they use in research studies)... Basically, clear, preferably unpigmented oil as an interface (this makes capilaries more visible but reduces the view of scales). Skin (Dermoscopy) I'd start at 50x magnification if you can. Look at spots with obvious involvement first (they may show up in spaces that don't appear effected to the naked eye, I had scales everywhere I have joint involvement). Look for scales, red and pink areas, and red dots. Pink areas are likely spots of inflammation or vessel dilation. Tiny red spots are blood vessels under the skin. In psoriasis they will be equally spaced, possibly in circles, lines, or rings. In eczema they are randomly arranged and usually in circles/globs. Scales in psoriasis are sparkly and white to creamy colored on pink or red skin (possibly with microhemorrhages/bright red to brown spots). In eczema they are likely yellow. Fungal infection will not show up with sparkly scales (these are caused by the scales sticking to each other and trapping air - the appearance is called "micaceous"). Nails (Onychoscopy) Note: some of this a regular magnifying glass may suffice... or the highest magnification available to your cell phone, some of it needs at minimum 20-50x. Eczema, and psoriasis can all cause nail changes, amongst other conditions. Look for color and pattern (same as scales). Lifting will show as light/whitish-creamy spots near the end of the nail, in psoriasis this will be bordered by red/pink (inflammation). Bordering lifted or thickened spots may also be yellow/orange/salmon roundish areas (these are called salmon/oil spots). Look for ridges (ps can cause both vertical and horizontal ridges, ra can cause vertical ridges, some of which may not be visible to the naked eye). Fungal will appear with verticle stripes, they look like spikes and can be any color from a light yellow to brown to green (also may have areas that look like mushroom clouds - these are large areas of fungus - spikes show the direction that the fungus has spread). Bleeding may also be visible as red, brown, or purple spots. Thickened spots from PS usually have more flat or rounded boarders but they may look like spikes at lower magnification (especially if they have hemorrhages in them), so increasing magnification to 200x can help differentiate them. You may also see microbleeds around the nails (not just under) or on the cuticles (I found them ALL OVER the affected areas... Kinda freaked me out a little honestly). Pitting can also be seen in a variety of inflammatory skin conditions (they look like little tiny dents... they may fill with interface cream that's been applied or dye if used... They may also appear yellow in the center). Fungus also usually shows a "ruin appearance" which causes the thickened bit under the nail to look torn or like there's little caves (note: under lower magnification psoriasis may look like this but greater magnification will likely show brown and red spots (which are hemorrhages)... With the thickned bit being relatively uniform (there may be cracks though)). There's a bunch of other findings that are very, very specific. A look at the wet nail will make it near impossible to see scaling but can help you see bleeds and things like salmon patches... It may also make micropits show up more clearly. Veins/Blood Vessels/Ect (Capillaroscopy) This test you'll need to do wet. In my experience vaseline can be a pain to work with... It likes to be irregularly thick which can hide or blur things. If you have a thinner oil (like lube or mineral oil), this works very well. It can still be a pain in the butt on areas where there's skin involvement because it can make bumpy and scaly skin very shiney but it's easier to work with. The areas to look are: involved skin, above the cuticles ("proximal nail fold") and in the nails themselves ("nail bed"). Capilaries are usually very uniform - they should be nearly the same spacing, size, shape, length, and relatively straight (a little curving can be normal but they should not go sideways, curl, twist, have missing pieces, or have splotches (the later may actually be a bleed)... they should look kinda like a hairpin with a loop at the top (upside u). Abnormalities show up in a variety of things, but some types are specific to certain conditions. I believe 3 coiled capilaries and 1 other abnormality is normal, but they shouldn't show up on more than 1-2 fingers nor be widespread on a finger (I had several fingers with long rows of coiled/twisting capilaries and several microhemorrhages and avascular areas throughout...). Skin capilaries will usually look like little dots, coiling or capilaries that look like rings may signify a health issue (like psoriasis) - but may not be visible in those without a related health issue. Widespread abnormalities are suggestive of a health issue, especially autoimmune. These changes may show up before the illness becomes apparent on blood tests of with overt signs you can see with the naked eye. Psoriasis shows up with coiled capilaries commonly, amongst other findings. Things like dermatomyositis and Raynaud's will show up with a wide variety of abnormalities (generally a "systemic Sclerosis pattern"). Avascular areas (where there's no capilaries) and microhemorrhages (spots of bleeding) are highly suggestive of a connective tissue (autoimmune) condition. There is also something called angiogenesis which is a sign that new capilaries are growing after they've been destroyed (these look really... really wild)... areas with this sign may have microhemorrhages in the cuticle and up where the capilaries are. There's way too many for me to list them all though. Also, some nail changes may show up with similar capillary changes in the nail bed as the proximal nail fold. I found Capillaroscopy to be a giant pain in the butt but it was super interesting and also kinda scary (my capilaries are super screwed up). There's other techniques that use different types of light and the likes. If you are curious enough to do this technique, I'd suggest at least looking up photos from journals or studies to compare. There is a blog called "Who Needs Doctors" that has a very good run down of different capilary changes. There are a lot of changes that basically need a computer program to identify (like abnormal spacing). I did this test on my husband and found a single microbleed and abnormal capillary. The difference between his and mine was pretty overt. I just thought I'd share because it was kinda fun and very diagnostically relevant but some places don't have docs that perform it or don't even think to do it. A dermatologist is the best bet there. For systemic Sclerosis and dermatomyositis the capilaries changes are directly connected to disease activity (not necessarily in anything else). If you don't want to sort through all the diagnostics but are curious you can do it then bring the findings to your doctor. If you're curious enough to want to know what they mean there are plenty of websites with that info (obviously I'd still suggest bringing the findings to your doctor if you find something concerning). If you have any questions, I'd be happy to help but please know what I'm not a medical professional in any way (I have training in medical coding, which gives me the bare minimum of basic knowledge... mostly enough to read studies and understand them and feed my curiosity, lol).
  7. Will do! I see the specialist in a couple weeks. I'm actually super excited to see my doctors right now because everything's going really well. I haven't had an attack in like a week or two! And my skin is clearing up! I'm feeling SO JAZZED! 😃
  8. Have you tried low dose naltrexone? There have been some studies on it and dissociation (which were promising), it's also something they give for POTS. It might be worth asking your doctor about?
  9. It is possible to have POTS symptoms sitting up. Some medication (I think midodrine is usually responsible) may cause symptoms when laying down. I do find that sometimes I have symptoms when sitting or laying down when I'm having a really bad attack (sometimes it takes 5-10 minutes before the tachycardia finally goes down, even reclining... but these are attacks that would have me pass out of I were standing generally).
  10. I was wondering if anyone has played around with electrolyte mixtures? Is sodium more important than other electrolytes (potassium, magnesium, chloride, ect)? Or is a wider range of electrolytes better? I was prescribed 2000mg of salt by my doctor, but I have psoriasis and occasional elevated liver enzymes (lots of salt is supposed to be bad for both of those). I've been playing around with using 1000mg salt, adding salt to everything I eat and using an electrolyte solution in my 80oz+ of daily fluids (water + just enough juice to flavor it up so I'll drink more). It seems to be evening out but I'm also not sure I have the right ratio. I'm wondering how much sodium I can replace with other electrolytes, if it's logical to try to offset the sodium load that way so I'm not taking in too much salt but still keeping my blood volume high enough to avoid POTS symptoms. Anyone have any ideas? Tips? Tricks? Ect? Thanks in advance!
  11. I do get muscle weakness with really bad POTS attacks, but not the whole body. It might be related to small-fiber neuropathy that's suspected to play a role in things like POTS, fibromyalgia, and CFS (the messages just aren't getting to the muscle nerves properly?)... but I pretty much only get it in the lower limbs. I do also get slurred speech, but I'm not totally sure if that's POTS, brain fog, or anxiety. I'm not sure if I'm hyperPOTS (I have symptoms that suggest that's part of it at least), I'm definitely hypovolemic (so much blood pooling in my limbs it's unreal... they literally turn violet and splotchy if they're lower than the level of my heart for longer than about 2-3 minutes (so anytime I'm standing). Do you get any tremors or muscle twitching? These can occur with POTS (seems to be quite common with hyperPOTS). These can fatigue the muscles causing soreness and muscle weakness. Spasms/ect can happen anywhere in the body that there are muscles or motor nerves. Also: the autonomic nervous system does control breathing. Occasionally I have a hard time breathing and I imagine it's related directly to dysautonomia in that the nerves of the autonomic nervous system aren't sending messages properly. That said: I'd talk to your doc about it. Full-body weakness is a pretty scary symptom.
  12. Dissociation is a natural response to stress (like fight and flight) and can easily be caused by anxiety, especially for those who are prone. I do have a dissociative disorder so I couldn't tell you if this is related to dysautonomia, but I can tell you that everything kind of ebs and flows on a continuum for me (though this may be because stress worsens nearly everything under the sun). That said, brain fog has got to make disassociation worse. I can't imagine any way that it wouldn't since there's some pretty significant overlap in manifestations of the two. I'd even bet that brain fog could trigger dissociation. The effect of dysfunction in the basal ganglia (as in POTS and other forms of dysautonomia) definitely have something to do with that. The autonomic nervous system is pretty big. *Shrugs* As for a clear connection from one to the other... no idea. Dissociation is a pretty poorly researched topic unfortunately and I don't think anyone has looked into an overlap between the two.
  13. I always find myself triaging everything. Kitchen, dining room, and living room are high priority, followed by the play room and mudroom, then bedroom and bathroom last. I like to maintain the idea that I'm not a horrible slob but the bathroom always ends up the last sign of the chaos that is my life. I did buy myself a really nice flat mop though so that I can at least be ergonomic when I'm tiring myself out with keeping the floors clean with a dog, a cat, a toddler, and a husband that is slowly getting better at keeping up after himself (I think he's developed a whole lot of sympathy for me after seeing me pass out four times this year and go through a slight mental breakdown with all the doctors visits and medication changes). But ya know what? Everytime I clean the house (which I try to do once a week (but don't always accomplish))... I feel exhausted, but I also feel totally cleansed. A cold, wet bandana on the head (I have been known to throw them in the freezer in summer) also really helps since I tend to get overheated really easy while doing lots of physical tasks. And over time, I've learned to do them in short spurts with breaks for relaxing and drinking water in-between.
  14. They do have some vitamin a treatments that she could ask her doctor about (I imagine this would be easier on her liver). Some people see improvements in psoriasis (including the nail) in as little as three months... but toenails grow really slowly and it's likely that she may not see results for at least six months. Part of medicine, unfortunately, is weighing risks and benefits. Even long courses of topical steroids can have significant negative effects (namely thinning the skin and dampening the immune system in the area so that infections can get in easier). If she's ever been on Prednisone, Methotrexate, or Sulfasalazine and saw improvement in her nails during that time I would consider that pretty definitive that the nail changes are psoriasis (though no change doesn't really mean anything). If Prednisone made the nail worse this would suggest that it was an infection and not inflammatory. If she's ever been on Plaquenil and the nail got worse, this may also suggest psoriasis as Plaquenil has a reputation for worsening psoriasis (though, again, no change doesn't mean anything - and the reactions of psoriasis to worsen with medication is pretty personalized - for example, some people have problems with Sulfasalazine worsening psoriasis, but studies have also found it to help).
  15. Does anyone else deal with tremors or muscle spasms? Does a little extra magnesium help? I've had a couple bad ones lately and they kinda freak me out. I don't want to bug my doctors anymore than I have right now (I might bring it up to the POTS specialist when I see him in January). They seemed to start with spasms in my thighs which progressed into my whole body and were lasting at least half an hour from start to end. Is there any way to prevent them or stop them before they get to the whole-body-quivering stage?
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