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kafie

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Posts 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 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?

    PhotoEditor_20190329_221642294.jpg


  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. 2 hours ago, Lily said:

    You probably ought to ask your doctors about this question, given the other problems that your salt intake could affect.

    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. 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).


  9. 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!

     


  10. 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.


  11. 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.


  12. 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.


  13. 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).


  14. 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?


  15. On 12/18/2018 at 12:02 PM, StayAtHomeMom said:

    Crumbling? Like you barely touch the nail and it just crumbles off? My mom has that issue and the doctor said it was fungal and there was nothing they could do because her liver number are too high from her RA meds. I always thought it was a weird thing for her toenails to do. Her old PCP told her to put nail Polish on it. 

    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 can co-occure... You're actually more likely to get a fungal or bacterial infection where the psoriasis is flaring)


  16. On 12/19/2018 at 4:24 AM, Pistol said:

    @kafie - regarding the turmeric: use a good quality supplement that is combined with black pepper, this increases the level of Turmeric in the blood. it REALLY works, even my PCP ( who does not typically recognize herbal supplements ) recommends this to his patients since there are many studies done that prove it to be an effective anti-inflammatory.  You had mentioned psoriatric arthritis ( spell? ) in one of your other posts. Does a dry, scaly, flaky spot on the nose count? I have this off and on on my nose or cheek. -- I am a firm believer that diet is a way to combat disease, so going off dairy is a good idea. My mother was very ill with POTS symptoms and she went on the elimination diet, went off most foods and then slowly introduced them one by one back into her diet. She found out that certain foods ( like chicken and vanilla ) caused her problems. So then she got checked for food allergies and these foods showed up as an allergy!!!! Now she does not eat them any longer and feels better. My M-I-L has sjorgren ( auto-immune ) and also found certain foods trigger her symptoms. ---- Knowledge IS power as you stated in your post. When I first got sick and no one knew what was going on I researched my symptoms and told my doctor that I had hyperadrenergic POTS before seeing a specialist - and I was right! Without doing my homework I would not have known to see an autonomic specialist. We have to be in charge of our own health - so do not listen to those who poo-poo our efforts. Most likely they are too healthy to worry, but we are not. Best wishes!!!!

    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.

    *Edit: I'm actually probably wrong on that... and it's not exactly over production of skin cells...... If I remember correctly it's a build up from the inflammation damaging collagen cells and what builds up is actually the products of that... But it can appear as very thick, dry skin.


  17. On 12/16/2018 at 2:33 PM, Pistol said:

    I have had low-grade temps and joint pains coinciding with my hyperPOTS flares. Several auto-immune studies have all come back negative, except for slightly elevated ESR ( Sedrate ). Even now that my POTS seems to be controlled I still have joint pains and swelling - no longer run temps, tough. I am not sure if this is related but I wanted to let you know.   

    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 lot of AI stuff... sometimes it takes awhile for the antibodies to rise to levels that would cause a positive result/diagnosis... But symptoms can start long before the inflammation is detectable on tests.


  18. 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 problem too and is certain it's just dehydration... I'm not so sure but it's her body so if she doesn't want to address it that's her business - she's only had 1-2 faints in her lifetime, so I guess it's not a big deal for anyways... But I have my theories that it's something in our genes).


  19. 4 hours ago, Pistol said:

    Hello @kafie - I am happy for the progress you made with getting to the cause of your symptoms. One thing to consider: when your body is fighting chronic inflammation ( in your case RA, IBD etx ) it is constantly stressed and therefore will make POTS symtpoms worse. You also have auto-immune issues, so that does too. I'm in the same boat - I have arthritis in my spine and other joints as well as IC ( chronic bladder inflammation ) and GI issues including IBS. My ESR is always elevated due to the body trying to fight all the inflammation and it wears us down. So if you treat the inflammation then the POTS should get better as well. In my case I always feel much better when the inflammatory symptoms are not as bad and will have a lot of arthritic etc symptoms when I am in a flare. --- Also: I am not able to take NSAIDS si I take a strong Turmeric supplement ( a recognized and proven anti-inflammatory ) and it works wonders for me. I am not sure if it is strong enough for RA pain but maybe worth a try? --- Merry Christmas to you as well and I wish you a HEALTHY 2019!!!!

    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 to make it bareable))... but I try not to.

     

    I just figured out that I've had palmar-plantar psoriasis for probably 10 or more years - which explains a whole lot (I've had arthritis symptoms for about 5 years, it just got a whole lot worse over the last year and a half... it was probably subclinical before that).

    I have been applying hydrocortisone to  a small spot on my foot where I've had "athlete's foot" for a very long time. I used antifungals on it for years and it never did anything... but now it's almost clear. I guess the two look very alike - it's diagnostic though because this should make it worse if it were fungal.

    That plus what looks like a plaque on my ankle, the thickened nail, and the rash on my hands pretty much nails that down. I'll probably still go to the dermatologist to get it medically diagnosed (and, yeah, it'd be nice to get some pointers about the acne)... but that was kinda the last piece for me (mostly in that I was curious about the feet because it never transferred to my husband, which was curious considering tinea is extremely contagious).

     

    I might also try removing dairy from my diet. I'm lactose-intolerant anyways and some people find it helps with autoimmune stuff.

    Some people think I'm a bit crazy about seeking out diagnosis... but they don't live in my body and often think I'm just sick because I have a poor lifestyle...

    But this gives me a direction to go. Knowledge is power. Since I know what's going on I can figure out what I can do to help improve the situation.

    #1 is remembering to take my medication reliably though. 😅


  20. 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 from shea butter, jojoba oil, hemp seed oil, and a little extra vitamin e... It only keeps my skin from getting to the cracking/bleeding point - though a little hydrocortisone takes care of the erythemia nicely).


  21. 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 the regiment). 👍


  22. 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.


  23.  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 Sulfasalazine about a month and a half ago. It really helped the arthritis - reduced the severity and frequency of flares (d*** do I wish they were completely gone, but I can handle the pain provided it doesn't go over a 5 on the pain scale)... but a rash that appeared when the arthritis became bad enough for me to talk to a doctor about came back. My son has struggled with a rash since birth so luckily I tend to keep my skin pretty well moisturized on my hands, so it have gotten as bad as I assume it would.

    I spoke with my rheumatologist and he piped up with "oh, maybe you have psoriatic arthritis". I'm familiar with the condition but it wasn't even on my radar (IBD was though... Which... Shocker, commonly co-occures with PsA). It even connects with POTS - both involve Th1 inflammation - as does... Apparently IBD (I have GI inflammation but it hasn't been diagnosed as IBD... The gastro pretty much just shrugged it off) and PCOS (which I have diagnosed based on blood tests... They've never found a cyst)).

    I just about lost my mind over it... all this looking for answers, and just like POTS... I looked into it and wrote it off because symptoms weren't severe enough or didn't fit the picture to my satisfaction (of course... I'm trying to check off every box and symptoms that fit the clinical picture to perfection and a severe extent).

    So I'm feeling really angry with myself because the symptoms were there - I've probably had psoriasis for a long time but it just wasn't bad enough for me to do something about it. I kinda feel like it's my fault that all of this was a mystery for so long.

    Of course, I'm also really satisfied that I figured it out. It feels so much like a weight has been lifted. I have answers! To EVERYTHING!!! That... Is an incredible feeling. Especially knowing that POTS has to be connected to something, and now I know what it's connected to and why my POTS symptoms worsen with my arthritis flares!

    It's been a weird, wild journey this last year and a half. I felt through a lot of it that I was just losing my d*** mind (not that that's a stretch!). But that feeling is settling and dying down now.

    The last piece here is to see a dermatologist and get the formal diagnosis... but I'm not even sure that's necessary - I can manage the rash well enough and as long as it doesn't crack and bleed it doesn't bother me that much. Though I think I may take my rheumatologist up on it just to have that satisfaction (just right now I see so many doctors that the idea of adding another feels a little overwhelming).

    So... how are you all doing? I hope you're well. Happy holidays! (And a merry Christmas to me... I'm turning into a dragon apparently, lol!)

     


  24. 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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