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kafie

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Everything posted by kafie

  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
  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
  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 re
  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, ligh
  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
  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 t
  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
  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 fo
  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
  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?
  16. Not necessarily quite to that extent but it can make the nails pretty brittle and prone to breaking. Some people's nails do just fall apart though, or come completely off (the body overproduces collagen and this builds up between the nail and skin and separates the nail from the bed - this also creates gunk under the nail that does just crumble). The only way to really be certain is either 1. Try a treatment for either fungal or inflammatory, if it works you've probably got the right one (note: steroids will make fungal infections worse) 2. Get it biopsied (note: the two things
  17. You'd have to get a dermatologist to look at it honestly. One thing to note would be if it responds to anti-inflammatories (like hydrocortisone)... but that kinda only tells you half of it (eczema is also caused by inflammation)... There area a couple different types of psoriasis and also atypical presentations. Plaque is the most common which shows us as a red rash with white scales, overtime this thickens because the body over-produces skin cells*. But there are also varieties that cause blisters and really strange looking rashes which are less common and probably harder to diagnose. *E
  18. Have they looked into a seronegative arthropathy (Irritable Bowel Disease or Psoriatic Arthritis)? Both will cause joint pain and an elevated ESR - for PsA elevated ESR is actually more common than elevated CRP... psoriasis can show up after the arthritis (though this isn't terribly common) and the skin condition may be minor (like a single plaque behind an ear or a single messed up nail (thick, flaking, crumbling)) or confused for other conditions (eczema, fungal infection, ect). Also, as mentioned by someone else... you can have the disease and be "seronegative" - this can happen with a
  19. I think most people have a little bit of both types of POTS. I have a fair amount of anxiety and for me that's kinda chicken and the egg. That said, if you have underlying anxiety, POTS can make it worse and some medication used for POTS (like beta blockers) can actually reduce anxiety. And with that all said: docs are likely to confound the two... to the point that a lot of us are misdiagnosed with anxiety (in my case I do in fact have both) because anxiety can cause faints (and I think the faints are more likely to bring people to the doc than the lightheadedness (my mom has this p
  20. I have been considering asking my rheumatologist about tumeric. My father (who has RA) has been looking into it too but hasn't tried it yet. Luckily I really, really like Indian curry, which has a fair amount of tumeric (I'm sure it's a lot less than there is in a tablet though). Unfortunately I'm not supposed to take NSAIDs as well (I'm on two medications (Sulfasalazine & Fludrocortisone) that increase my risk of ulcers. Being the nutcase I am, I still have taken naproxen when the pain is too much (sparingly though... And it only takes 1 tablet to do the job now (it used to take 2-3
  21. It is a HUGE relief! I figure I will eventually see the dermatologist after my endless doc visits are over (I have three next month and that's enough for me... Though I might end up cancelling one because it was a test I needed for a medication I might not be continuing). It'd probably be good to get some tips about the rash so maybe I can keep it from flaking (there is no amount of moisturizer that does that - I make my own body butter for my son's skin (because he had "eczema" as a baby (idk, maybe it's psoriasis - he still has a patch on his earlobe but it's mostly gone now)), made fro
  22. After many years of dealing with this (and pretty much 1-4 faints a year since I was about 15) I finally got diagnosed earlier this year. I had to practically demand it from my PCP who was certain it was panic attacks (told me so based off flushing about 7 years ago). He sent me to a specialist who ran no tests other than a standing test on my heart (which was positive) and prescribed me compression stockings, lots of water, lots of salt, some exercise, and Fludrocortisone (florinef), which... Surprise surprise, HELPED (from 10 dizzy spells a day to 1 every week or two provided I follow t
  23. Autoimmune was the first thing that came to mind for me as well. I have arthritis (we thought RA, pretty sure now that it's PsA). I run a fever anywhere from 99*f-100*f (via forehead) quite often with flares. AID can have a lot of non-specific symptoms that are easy to pass off till like gets bad enough to point towards a diagnosis. Fatigue is also very common of pretty much every AI condition every.
  24. Hey everybody! I got some serious answers lately and I'm kind of excited about it all... and since I'm probably driving my doctors and friends nuts with this I thought I'd share with you guys. So earlier this year I was diagnosed with seronegative rheumatoid arthritis. RA runs in my family and so I didn't really question it. My CRP was elevated (15, out of range that's supposed to be <3) but the rest of my blood work was clear (I have on and off anemia and occasional elevated ALT (liver stat))... and something with the diagnosis didn't sit right with me. We started me on Sulf
  25. I'm actually on testosterone (I am trans) and unfortunately, I haven't seen much (if any) improvement of my symptoms. If anything, this year has been my worst year for symptoms (I started T late last year). That said, there are studies showing that T improves anemia which might improve some symptoms that contribute to the suck that is POTS (fatigue, lightheadedness). I was anemic before I started T and once I got on it the anemia went away. Unfortunately, the POTS is just as bad for me.
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