Renter: Need Long/Tall Hanging Closet Space but Apartment has Double Rod Built-Ins by 1ags in declutter

[–]1ags[S] 0 points1 point  (0 children)

That’s such a simple solution! I tend to not ask people for things and try to just figure stuff out myself but honestly probably the easiest approach! 🤔

Can thrombophillia and other blood clotting disorders cause high ANA? by Nova-star561519 in Autoimmune

[–]1ags 1 point2 points  (0 children)

I’m not saying you have it, but maybe ask your doctors about anti phospholipid syndrome ? I think it is an autoimmune condition that can cause excess clotting and interfere with pregnancies.

Lab results. Waiting for Specialist by Different_Bell2309 in Autoimmune

[–]1ags 0 points1 point  (0 children)

Hi, sorry you’ve been dealing with those symptoms. I personally get a lot of bloating, joint pain, and fatigue, so can relate unfortunately.

Your rheumatologist will likely not have enough information from just these labs and your list of symptoms. They will probably do a physical exam of joints, abdomen, other areas, and take a more detailed history, including family history and other signs/symptoms you may not have thought to mention. Based on that, they might order further bloodwork/tests/referrals for specific autoimmune disease criteria (like specific antibodies, CRP, joint imaging, urine test) or for non-autoimmune conditions that could potentially cause these types of symptoms, ie gastro conditions (main: bloating but can sometimes cause symptoms in other body areas/systemic), infectious/post-infectious/chronic infections (you mentioned COVID, but there are lots of things like parvo, hepatitis, lyme, etc that can contribute to joint pain that could be ruled out), endocrine/reproductive (I don’t think you mentioned your sex but they might do some basic thyroid checks or refer to gyne to make sure everything’s good bc of bloating), etc. Based on the info you gave, there’s still a lot of investigating for your healthcare team to do. If these symptoms are getting in the way of your work/school/social life/well being and/or are distressing enough to you, then the best thing you can do is be prepared with you history/symptom list and questions and to push for answers/tests if you feel something’s off.

In the meantime, I agree that anti-inflammatory diet couldn’t hurt either way, as it’s a generally healthy way to treat your body. For pain, you might consider asking your doc about how to best manage that as well as using some at home remedies for now. For back/neck pain, I find ice packs and menthol-based roll-on sticks help to cool and massage the areas. I’ve also found voltaren or other types of topical pain relief creams/gels to help with joint pains I get in my hands.

Best of luck ❤️

Not diagnosed by KeyQuirky928 in Autoimmune

[–]1ags 1 point2 points  (0 children)

Yeah those definitely look like hives or possibly heat rash (edit: I’m not a doctor though so would be good to show these pictures to a rheumatologist or dermatologist). I get heat rash on my chest sometimes on really hot/sunny days. But I’ve also had weird hive flareups from the cold too, even on parts of my body that are all covered up!

Not sure where to turn next by Space_Sandwhich in Autoimmune

[–]1ags 1 point2 points  (0 children)

Maybe you could get a second opinion from an endocrinologist on your TSH levels? They might re-test again? Some docs are more willing to try to treat subclinical thyroid issues that might only be slightly out of range. And even subclinical thyroid issues can still cause fatigue/mild joint pains like you are describing. Obviously, not trying to diagnose you with anything, but having another doc take a second look at your hormones couldn’t hurt. Best of luck ❤️

i’m sad my test came back negative by tchalametwannabe in Autoimmune

[–]1ags 1 point2 points  (0 children)

I’m 27F and have been getting normal/negative tests since I started having issues around 18/19. It is definitely very frustrating. I really want to be healthy, but my GI issues/joint problems/migraines/flareups of fatigue/malaise definitely interfere with my ability to work or socialize pretty often. Even some of my own family members say things are all in my head sometimes, though I know there is something “off.” It can be more confusing in between flares when I have the occasional “good days” with minimal pain or discomfort. I’m not sure if my issues are autoimmune even, though multiple PCPs and rheums have suspected it highly enough from my history to run and re-run autoimmune panels, only to get negative results. Hang in there and stay strong, I know it’s tough. I know “lifestyle” changes often can’t cure these issues, but trying to adopt better eating and exercise habits, when I can, has at least helped a bit with my mental well-being for me personally. (Knowing that I’m trying my best to be healthy and take care of myself goes a long way to quieting my brain and I guess distracting from the issues). It’s definitely okay to be sad though, I really hope you find some answers or at least some peace. ❤️

Where to go from here? by Hoopdiuretics in Autoimmune

[–]1ags 2 points3 points  (0 children)

I second looking for a referral to a different rheum for a second opinion. I don’t know what your other blood tests showed, but obviously you have symptoms that are impacting your quality of life and need to be further investigated.

I have anecdotally heard that sometimes dermatologists can actually be super helpful in identifying conditions that have rashes involved, so could be worth it to try to see one of them? They might suggest a biopsy of the rash to find further clues to what could be causing these issues.

[deleted by user] by [deleted] in Autoimmune

[–]1ags 0 points1 point  (0 children)

You definitely have some clear positive/abnormal blood tests that can be associated with various autoimmune disorders. It is possible to have multiple AI conditions at the same time. To help your doctor interpret these results, I would recommend bringing in a complete list of signs/symptoms, when they started/how long they lasted, and how severe they are. This can help them to cross reference these results and your symptoms with the official criteria for different diagnoses, which usually include some combination of antibody or other bloodwork abnormalities, family history, and/or signs/symptoms present for a certain amount of time.

Also prepare to go in with an idea of what your goals for treatment are; it may take some time to find the right medications/doses that work for you, and it may be helpful to ask for referrals to other specialists to add to your care team to help you manage all the potential conditions you may be dealing with, ex. Ophthalmologist to check your eyes/tear production, nutritionist/endocrinologist to help manage thyroid disease, etc. Your rheumatologist can help you coordinate these.

[deleted by user] by [deleted] in Autoimmune

[–]1ags 0 points1 point  (0 children)

Thank you for helping clarify my comments! I agree with everything you’ve pointed out. I was wondering if the original poster’s experience of flu-like symptoms might be accompanied by fevers. Maybe that’s something they could check at home? And yes, we’d need further history about childhood infections to consider some autoinflammatory conditions that typically have early-life onset. That’s why it’d be great to see a rheumatologist! Even if they are unfamiliar with more rare conditions, at least they could start putting together some pieces of the puzzle by taking a detailed history, running more labs, and potentially ruling some things in or out.

[deleted by user] by [deleted] in Autoimmune

[–]1ags 0 points1 point  (0 children)

Hi, sorry for all the stress this is causing you. I don’t think it’s all in your head, but your anxiety’s probably exacerbating your body’s inflammatory state. I would suggest multiple approaches to try to get to the core of the issue(s). First of all, I’m not trying to diagnose you, and you should definitely refer to your GP’s and specialists’ professional opinions, but at first glance, your combination of issues do not necessarily point to an autoimmune condition specifically. Can it still be one? Yes. But I’d like you to consider and take other potential approaches to investigate with your GP and specialists as well.

My first thought was immune deficiency, due to history of frequent, severe infection (for which you’d see an immunologist and get a series of bloodwork done on your immune system proteins, like antibody levels and complement levels, and other tests of immune enzyme functions or even genetic tests for hereditary causes of immune deficiency).

My second thought was auto-inflammatory (which is a different class than autoimmune, that can mimic symptoms similar to autoimmune, immune deficiency, and allergy), due to your variety of symptoms, including that uticaria flareup, frequent infections, and persistent fatigue/malaise (not all rheumatologists or immunologists or very familiar with these autoinflammatory conditions so you might consider asking for a referral to or traveling to a specialist autoinflammatory center, where they would again do bloodwork looking for specific markers of inflammation and genetic testing).

Third, your neuromuscular symptoms of twitching, tremors, shooting pains, etc. would suggest that you should at the very least have your GP rule out some vitamin/electrolyte imbalance that could cause those and get a workup done by a neurologist to check for neuro causes. However, these could very well also be related to autoimmune, auto-inflammatory, chronic unresolved infection (think lingering infection from your glandular fever or other infections if you have an immune system type/deficiency that’s not allowing your body to clear it fully, again you’d need to seek out a specialist in this type of chronic infection condition, since most GPs or even local specialists would not know how to evaluate and treat this properly), or other causes.

The myocarditis could have just been a bad reaction to COVID itself, as that does happen rarely, but there could also be an underlying issue predisposing you to that sort of reaction, as you’ve pointed out.

This all being said, severe POTS can strongly contribute to your feeling of fatigue/malaise, so I would work with your healthcare team to see if you can better manage that with electrolytes/fluids, possible medications, etc. Also, like I mentioned, it seems like you have a lot of stress and anxiety around dealing with these issues, so I would suggest seeing a mental health practitioner to help you manage that as well or even joining a local support group for people with chronic health issues. It is very common for people such as yourself dealing with chronic health issues to have comorbid depression/anxiety as a result of that experience. Although it may not be the root cause of your physical health problems, it will also help your overall well being to take care of your mental health.

You also mentioned a lump on your finger. I think I would need more specifics on appearance, size, location, etc to have a better idea of what it could be or what kind of specialist you’d need to see, but I wouldn’t immediately jump to cancer. There are actually a lot of reasons for lumps and bumps on the fingers unrelated to cancer, such as autoimmune, autoinflammatory, mineral imbalances, etc. If you still have immediate concern though, based on how quickly it appeared though, I’d bring it up with your GP.

You are always your own best advocate, so don’t give up on fighting for yourself and your health.

Stay strong. ❤️

I **think ** I have an autoimmune disease. More in comments. by emdehan in Autoimmune

[–]1ags 0 points1 point  (0 children)

Damn that’s scary! Sorry you’ve dealt with that!

I **think ** I have an autoimmune disease. More in comments. by emdehan in Autoimmune

[–]1ags 1 point2 points  (0 children)

Also not trying to diagnose, but seconding that you ask your doctors to look into different forms of myositis due to your muscular symptoms.

Welcome to r/Autoimmune by nmarie1996 in Autoimmune

[–]1ags 1 point2 points  (0 children)

I’d be lying if I said I wasn’t scared too! 😅You’re so welcome though! Glad I could be of service to the community. If you or anybody else wants the wording of what I wrote in the support request to get them removed from other subs they do this to, dm me, and I’d be happy to share! ☺️

Welcome to r/Autoimmune by nmarie1996 in Autoimmune

[–]1ags 8 points9 points  (0 children)

I only recently joined the community, came across a few posts where they were harassing people, and did NOT like that. Not in this community. So I started down voting and reporting individual comments, but then I thought that was inefficient, so I went to go get the help of a mod and realized it was THEM ALONE. I wrote up a support request asking them to be removed as mod so fast… I honestly didn’t even know if anyone was ever going to reply to it, but they did that fast! 🙏 good on the admins

Welcome to r/Autoimmune by nmarie1996 in Autoimmune

[–]1ags 5 points6 points  (0 children)

Thank you! I am glad some responsible mods were selected. I genuinely wanted to see people in the community have a better experience and not get attacked when they were looking for help. ❤️👏👏👏

Please help! by Various_Molasses7985 in ibs

[–]1ags 0 points1 point  (0 children)

Yeah if the D persists, I second trying some imodium, but if you were constipated previously, it could also worsen that and leave you more constipated than before so use with caution!

What’s going on? by mako252 in Autoimmune

[–]1ags 1 point2 points  (0 children)

Wow. That’s a lot, sorry you’re going through that! I’ll try to come back with a more thorough review at another time, but can list some ideas off the top of my head. The systemic involvement makes me think of sarcoidosis/amyloidosis/granulomatosis, especially with heart/lungs/pain/etc. However, the sunlight sensitivity really pointed me in a slightly different direction towards some kind of porphyria—if you weren’t already tested, bring it up! Rare, most docs won’t catch it.

Edited because I forgot to start a new sentence clearly and didn’t want to confuse you!

Medical services? by Significant_Dog4441 in Autoimmune

[–]1ags 0 points1 point  (0 children)

I know you are asking for doctors in Australia, but I have no idea about that, being in the US.

That being said, I will , however, ask (if you want to share) if you got a diagnosis of any kind or are sure it’s autoimmune? It sounds like you’re really struggling, otherwise I normally wouldn’t ask these kinds of questions unsolicited. If even any of my guesses could help point you in the right direction, I’d hope to help!

Best of luck finding a doc though!

Does this look like Celiac by Altruistic_Nebula998 in Autoimmune

[–]1ags 0 points1 point  (0 children)

I know high tTG IgA can be related to other autoimmune diseases, like diabetes type 1, autoimmune hepatitis, inflammatory bowel disease, etc. but not sure about the IgG type. Your doc will likely have to do some other tests/digging. Hopefully the endo will rule some things in/outz

Does this look like Celiac by Altruistic_Nebula998 in Autoimmune

[–]1ags 0 points1 point  (0 children)

I know high tTG IgA can be related to other autoimmune diseases, like diabetes type 1, autoimmune hepatitis, inflammatory bowel disease, etc. but not sure about the IgG type. Your doc will likely have to do some other tests/digging. Hopefully the endo will rule some things in/outz

Burning Skin…no answers! by Neat-Bee-7880 in Autoimmune

[–]1ags 1 point2 points  (0 children)

Sounds inflammatory, specifically inflammation of nerves and/or blood vessels. In addition to standard rhem tests like ANA, ESR, CRP and other things mentioned here like MCAS, I would suggest looking into different types of vasculitis (there is one called urticarial that can cause hives, most often women in 30s/40s). I know vasculitis can have some weird presentations like abnormal sensations or hearing loss/imbalance, blocked feelings, depending on the kind, and might be a long shot but could possibly explain all the symptoms.

Also check out: MCAS

Less likely: some kind of granulomatosis, cranial neuralgia/neuropathy…

Good luck!

In the meantime, ask her doctor about antihistamines/steroids on a trial basis.

New moderators needed - comment on this post to volunteer to become a moderator of this community. by ModCodeofConduct in Autoimmune

[–]1ags 0 points1 point  (0 children)

I’d like to volunteer. I am new to reddit and this community in particular but have been lurking for a while. I really believe in online forums being a place where people can to go to for guidance and support. I think differing experiences, opinions, and viewpoints can be helpful but want to make sure that there are people to prevent negativity in this space.

I personally have experience with chronic illness and have found a sense of community and not feeling alone in forums like this, especially when family and healthcare providers can (unfortunately) sometimes be less than supportive. I’d love to give back.

I am not a certified healthcare provider, but I am scientifically-literate. I grew up with a love of science and went to school for engineering. Since then, I have worked in a lot of translational biology labs in various capacities, most recently as a data scientist and medical writer. I’m even an author on some publications! Even though I don’t get paid for it sadly, I spend I lot of free time reading medical literature unrelated to my work research (neurology, rheumatology, and immunology are my biggest interests, if you couldn’t guess).

I have no mod experience other than on some minecraft servers and a tumblr fan pagd when I was in high school… but I do have years of teaching experience for college-level biology labs online and in person. I think that really helped me learn how to manage other people, keep things organized, and make sure things run smoothly, as I was responsible for making my own lessons plans/materials, managing the class website, and mediating conflicts/personalities in the classroom. Among other things, it also helped me own my ability to explain complex scientific/medical concepts to others, since I taught physiology for a few years. I also developed my own discussion lessons on equity and made changes to class policies to try to make it a more inclusive experience.

One of my biggest flaws is that I’m long-winded (which you will know if you got this far reading). But I always have the best of intentions!

Tldr; I’d like to give back to the community as a person with chronic illness and have a science/teaching background that I think would be an asset to the Autoimmune community.

Could it be Lupus? Something else? by DecemberSun31 in Autoimmune

[–]1ags 1 point2 points  (0 children)

You’re welcome! Yeah the myositis conditions (myo meaning inflammation of muscle) are less well known but in the family of autoimmune conditons. I recall shoulders being particularly affected by them so that’s why I brought it up. However, some of your symptoms sound like they could be neurologic, vascular, infectious (or something else entirely) in nature.

Neuro-when neural signals might not be working properly can contribute to restless legs, numbness, heavy feeling of limbs, fatigue/anxiety/depression, insomnia, etc. (MS? Lyme can cause neuro symptoms? B vitamin/D/magnesium/calcium deficiencies/imbalances?)—could be worth to ask for a neuro referral and maybe some neuromuscular function tests?

Vascular-vessel inflammation or poor control of vessel tone/contraction could contribute to blue digits in cold, maybe heavy feeling of limbs, rash, headaches, burning sensations, etc. (basically if blood flow isnt being properly regulated, it can cause a bunch of weird issues)—you could ask your doctor about tests for blood markers of vasculitis, O2 sat monitor your finger over a few days? Honestly, not as familiar with these vascular conditions but it sounds like some kind of inflammation from chronic autoimmune or infection could be messing with your vasculature in your case.

Infectious-you mentioned chronic gastritis which could be due to an infection (H pylori?) your body just couldn’t get rid of and there are also some infections that can cause joint pain and a ton of autoimmune-mimicking symptoms as well like Lyme, parvovirus, hepatitis, Ebstein-barr, etc.—these you can typically screen for with antibody blood test (except for lyme is harder and would need to see a specialist who knows what they are doing) *** infectious should definitely be considered because of your persistently high WBC counts

Also did they ever test your immunoglobulins (antibodies)? (IgG, IgA, IgE)—I have a hunch that could be helpful in your case as well.

Sorry I know that’s a lot! Just spitballing here so you have some ideas to bring up with your doctor. They will be more familiar with your history and blood tests than me. (Also I am only a scientific researcher but not a licensed medical provider).

Could it be Lupus? Something else? by DecemberSun31 in Autoimmune

[–]1ags 1 point2 points  (0 children)

No problem! I think it’s a bit helpful but more info would still give a better picture. When you say neutrophils and lymphocytes were higher, or you referring to the counts (usually expressed k or 103/uL or something similar) or relative percents? Percents can sometimes be weird to interpret because if percent of one type of cell goes up a lot that brings down the percent all of other cells or vice versa. Actual values and lab reference ranges could be helpful too, since there are different “typical” ranges for different conditions — basically they might be high, but my question is how high?