I have Sjogrens. Lab test now showing high IgG. How do they know if it is from my autoimmune and not from any cancer. What I am trying to ask is how they rule out cancer?

This is prob more rant/venting than general but I couldnt decide.

Last week I saw a hematologist/oncologist in our local cancer center for a spot of thrombocytopenia after a recent covid hospitalization. Yay me. This Dr laughed at me for wearing a mask into the office. Ive been drilled for the better part of the last three months by my rheumatologist, cardiologist, and pulmonologist that if I am out in public or in close proximaty to people to put the mask on. Seems simple. But that a hemotologist/oncologist would laugh about it. Tell me they do absolutely no good and that Im wasting money on them. Then he wanted me to take it off so he could look in my throat. Like what do you do...

I know years back when a few family members had heart surgeries and cancer diagnosis's they were wearing masks when having to be out in grocery stores, hospitals, etc. So its not like masking is this novel notion. People also wear masks to prevent dust exposure, mold, pollution, etc.

I was shocked while hospitalized. They put all this effort into putting me into isolation. Everyone was supposed to wear a mask in. The hospitalist did, everytime he came it. But most of the night shift nurses and two on call Doc's waltz in wo a mask, two telling me they had just gotten off from shifts in the ER and were taking overtime on pulmonology. Are they insane?

Even before Covid, isnt it common courtisy to protect yourself and others when you go out if you are sick? Cover your cough, sneeze into a tissue, wear a mask, especially if you have cancer or such. I feel like masking is common in countries other than America. But somehow America got so divided in the last 10 yrs or so and there seems to be no consensus.

Im on a bunch of meds that have tanked my immune system. Ive already had 2 bladder infections, a facial staph infection, and then recently covid. So I get I am suspectible to infection. My Dx's below.

Dermatomyositis with myopathy, Interstitial Lung Disease, Left Ventricular Hypertrophy w Afib, Focal Segmental Glomerulosclerosis (kept in check by low protein diet), Dry Eye Disease, Adhd

Meds, Cellcept 2000mg, Prednisone 30mg, Metoprolol Tartrate 50mg, Doxyclycline 200mg

So, mask or not? Personally they dont bother me anymore. A little double sided tape on the bridge and even my glasses dont fog. In the summer it is a little hot, though.

I'll try to keep this short. 30F, symptoms for upwards of 8 years with no specialists believing me until recently. My new rheumatologist (I've have 3 previously who laughed me out of their offices) was able to find a positive ANA with a better, more sensitive testing system called Helios. I'd been testing negative the other ways. My first appointment with him, before the ANA came back positive, he was leaning toward psoriatic arthritis. But he said he would have a more concrete answer at our next appointment which is in November. Since then the ANA came back positive, none of the sub-serologies he tested for have though, just the ANA. I guess my concern is, since we only have the ANA, some x-rays which I do not have the results to yet, and my symptoms (joint pain--especially in hands/fingers, psoriasis of the scalp, low grade chronic fevers, chronic swollen lymph nodes, GERD/IBS, occipital migraines, general malaise, and maybe a few others I'm forgetting), am I in for a lot of trial and error here? I feel like with those results he really can't definitively say it's absolutely THIS thing, and I know a lot of autoimmune conditions have similar symptoms. Have others experienced this? Is there any more testing that can be done? I really hate all the unknowns. Thanks in advance for any responses. I've been constantly feeling imposter syndrome now that I finally have the positive ANA after testing negative so many times.

Disclaimer: I am not a doctor. I am a CIDP patient who is a strong advocate for education, well-being and understanding of effective treatment that can lead towards a better quality of life for those afflicted with this rare, incurable disease. For more CIDP resources and conversations involving CIDP, join us at: r/CIDPandME.

Shining Through CIDP: October Updates

Argenx, the maker of the new CIDP medication, Vyvgart Hytrulo, has a wonderful website called "Shining Through CIDP" that is filled with media content from real CIDP patients just like you and I. It is constantly being updated with current stories and information to keep us in the know and in the now!

The fresh new October content includes the following:

[Treatment Landscape Article] (https://shiningthroughcidp.com/everyday-life-with-cidp/treatment-options) This piece will educate readers about the existing CIDP treatments available and inform them that there is a new treatment option that was just approved, driving them to the VYVGART Hytrulo for CIDP website. Questions at the end of the article provide discussion topics to help patients have effective conversations with their Health Care Professionals.

[Rare, Well Done Series, Episode 2: Amanda] (https://shiningthroughcidp.com/rare-well-done) Watch as the Thrive Team, a squad of experts who help those living with CIDP make more room in their lives for what matters most, provides Amanda with mobility tips to gain confidence as she navigates through the Big Apple. Also included on this episode are 2 bonus videos: one where she discusses her own silver lining of not taking things for granted, and the other featuring her life tip about finding a transportation option that best suits her needs in the city.

[What is CIDP and Why do Symptoms occur? article updates + MOD Video] (https://shiningthroughcidp.com/everyday-life-with-cidp/what-is-cidp) Our most engaging and popular article received a refresh, featuring additional information and an enlightening new MOD video to further explain what CIDP is and how to explain it to others.

Enjoy! Stay strong 💪 Go with Love ❤️

Hello, I am 20 years old, I do not have any genetic disorders or anything like that. Going gym for 6 years. doing mma for 2.5 years. I have a low fat percentage/ in great shape.

I have allergies. When I had regular checks, I realized this and went to the doctor today: I am allergic, I am allergic to many things, I saw that these 3 values increased over time, I went to the internal medicine doctor today and he directed me to hematology.

why my lym is increasing and neutropenia is decreasing?

(I do not smoke, drink alcohol or anything like that, I have a high protein and plenty of greens diet).

https://preview.redd.it/zn06dmttvaud1.png?width=756&format=png&auto=webp&s=d60bf95c87af0e78fac4852269f25cb26302d618

https://preview.redd.it/s0byk6vtvaud1.png?width=750&format=png&auto=webp&s=a80b21df16cbe8cfeb9af874cc3bf9c2b82000d9

https://preview.redd.it/17srhottvaud1.png?width=776&format=png&auto=webp&s=0e08afebecb87b34c3cc6a99fd4242f4b446639f

I've got a few issues going on but mostly everything is worse on my left. Does anyone else experience this? I have itchy redness in my left armpit that appeared after first covid injection (left arm injection site) and will go away with steroid cream but then comes back again a few days later. I'm wondering if there is some sort of auto immune response going on there. My migraines, neck pain, shoulder pain and SI joint pain are all worse on my left. Additionally, I've recently had low cortisol results and I seem to be experiencing nocturnal and reactive hypoglycemia too (waiting to see an Endo on how that fits into the puzzle). The rest of my growing list is:

Chronic migraines & dizziness (episodic since age 8) Chronic daily migraines (lower grade constant migraine for 20+ yrs) Endometriosis Hashimotos Rheumatoid arthritis (sero negative so ???) Dysautonomia (pots and IST)

hi,

has anyone had a positive ANA (my results don't immediately show titer/pattern) and positive anti-dsDNA (result of 14 with a normal range of 0 - 9) and not end up having lupus?

the rest of my labs look pretty normal, including complements and inflammation markers (C4 was on the lowest end of 'still normal,' everything else in range)

have a follow-up appointment with my new GP upcoming, as well as some other health concerns/symptoms that i'm wondering if are related (currently trying to get referred to cardiology for orthostatic intolerance/dysautonomia as well as upcoming ob/gyn for a 9cm fibroid etc)

obviously have a lot of other vague, possibly autoimmune symptoms - main concerns besides the positional lightheadedness are intense muscle weakness & fatigue after any use (goes away with rest), overall fatigue, swelling in my joints (especially fingers) after prolonged or repetitive use, & then super obvious swelling in my face throughout the day.

dry eyes as well, surprised we didn't run sjorgens antibodies but i'm sure it's coming. low grade fevers, inflammation responses to certain (ingested) triggers, vague symptoms on & off for years but a pretty bad flare since spring of this year. yes mouth sores on & off, yes photosensitivity, yes fatigue/october slide.

resonate with both lupus and CTD/similar from reading y'all's experiences here, had Graves disease previously, just wondering what i can be educating myself about to try to advocate best for answers and help going forward.

not looking for medical advice, again do have upcoming appointments, just curious if anyone has any insight :)

Full context: I'm currently awaiting an appointment with a rheumatologist for further diagnostics. We know my symptoms are autoimmune-based, but we haven't narrowed it down to what it is just yet.

For those who are comfortable sharing: did your symptoms develop quickly over months or very slowly over years?

I'm honestly very shocked by how quickly this escalated over the course of 6 months. Maybe I've always had issues and just didn't notice until things came on rapidly and aggressively. I've genuinely questioned if I'm tripping and just imagining these symptoms being worse than they actually are... until my joints quickly remind me that the pain is very real.

The most frustrating part of this experience, besides how awful I feel, is just how much this makes me question my own sanity. I think deep down I'm hoping maybe others have had a similar experience and I'm not really as unhinged as I think I am.

ETA: Thank you so much to everyone for your responses! I truly appreciate everyone sharing their experiences ❤️

Hello everyone, I finished 4 rounds of Rituxan infusions for ITP about a month ago and just this week I started to have a really bad ache in my upper back in between my shoulder blades. Has anyone else experienced this or any other side effects this long after the infusions?

Hello Party People,

I just got my labs back and I need some advice.

I've not been feeling great for the last 6 months, manly fatigue, but for the past 4 weeks I've had some pretty full on symptoms:

-A rash on both hands -Swelling in both joints of my middle fingers -Pain in random previously uninjured joints -Migraines -Chest pain -Tachycardia

To name a few.

My Mum has MS, so that led me to getting Autoimmune blood work done on Monday and an echo on Thursday. It came back with...nothing.

ANA: Not Detected Anti-DNA(FE): <7 CRP: 1

Plan B is to see a specialist regarding POTS and hEDS, but my question for you lovely people is,

Do I keep trying?

I'm not too sure if this is a common experience for people with SLE and other autoimmune disorders, or if because of the results I should be looking for answers somewhere else?

I'll keep an eye out for more SLE symptoms like hair loss and mouth ulcers and take note.

But what do you guys think?

Hi all. I’ve been sick for 5 years with what I thought were sinus infections. ENTs could never find anything wrong with me though. I finally went to an infectious disease doctor to get some blood work done. While I was well, I got my immune system complements and IGA,IGG,IGM values checked. Which were all normal. My C3 was 133 and my C4 was 24. However I started to feel a “sinus infection” again and got more blood work done. I found out that I had 80.8 CRP and 344 basophils, as well as myleocytes in my blood. The infectious disease doctor says she believes this is autoimmune, since the CT scan came back negative. I get horrible headaches, face pain, body aches, joint pain, fever, ear aches, etc and I would take antibiotics and get better, but it would quickly come back. I got sent for more testing specific to autoimmune, but I’m not feeling as sick as I was a few weeks ago. My CRP, ESR, and DSDNA are all normal. I’m feeling defeated because I just want to feel healthy again. I’m nervous that if something doesn’t come up positive then I won’t be able to see a rheumatologist. Could I possibly have a seronegative disease? Does this story seem similar to yours? What should I do?

I have been given various steroids (Betamethasone, kenalog and methylprednisolone) and had adverse reactions to all of them. The only steroid that I've been prescribed and don't distinctly have a reaction to is regular prednisone. Has anyone else had this problem? Could this possibly be an endocrine issue?

Editing to add that about a week after the methylprednisolone injection my basal body temperature dropped to 97.1F before doing a booster B12 injection a week later (after realizing that it had tanked my levels) and it started to come up again

After being sick for several months with strange and evolving symptoms, I was referred to internal medecine specialists who are making me do tests as an auto-immune condition is suspected. At my first appointment I was prescribed prednisone. It seems like a really strong medication with lots of bad side-effects. Is there a reason why they would prescribed that and what was your experience on it?

Hello, I was diagnosed with autoimmune encephalitis of the NMDA receptor a little over 5 months ago, and I’m currently in recovery. I’ve started to experience feelings of derealisation/depersonalization that are becoming very overwhelming. It’s like all of a sudden I’m more in tune with out the universe works, and simple laws of physics that I’ve never questioned before in my life are now causing me great anxiety. For example one night I was thinking about the idea that our experience of reality is simply made up of light bouncing off objects directing into our eyes, and our brains interpreting those rays of light into legible objects. Even though I’ve always known this and never questioned how this works, all of a sudden I was filled with an extreme amount of anxiety and existential dread. Like I’m too in touch with how weird the experience of being alive is, too the point that I can’t comfortably live. I’ve also been getting strange feelings about relatives. Randomly sometimes I’ll look at my partner whom I’ve spent the last year and a half with and love very much, and all of a sudden he feels like a stranger, I’ve forgotten all of our memories, and everything he says and does seems so scripted and unreal like I’m on a tv show.

I’ve done some research and the best explanation I have of this is my NMDA receptor is damaged and still healing. If I’m not mistaken the NMDA receptors is the part of the brain that perceives reality, so damage of this part of my brain could explain why everything feels so not real. I’ve tried telling my neurologist that I know something is wrong, and that I’ve experienced anxiety attacks before and I know what I’m feeling now is different, but Ive been told it’s just anxiety, even saying “I know something is wrong” wasn’t enough for my neurologist to take me seriously.

Has anyone else experienced this while recovering from autoimmune encephalitis of the NMDA receptor ? I know this is a really rare disease so I probably won’t get the exact response I’m looking for, so I’d love to hear experiences from people with other disorders.

Hello, I’m hoping someone can answer a question for me. My fiancé has multiple autoimmune diseases, but it’s sort of up in the air which ones she has due to multiple diagnoses from multiple doctors, but it’s clear she has something.

She has the worst case of OCD I have ever seen. Over the past three years, she has gotten to a point where she is almost scared to move because of the joint pain she experiences. The pain is only somewhat managed, but enough where she can get up and do things when she wants or needs to. But every time I suggest that everything I find online about how exercise actually helps people with autoimmune diseases, she angrily and defensively counters that joints cannot be healed through exercise, and that exercise is bound to make things worse. I say that’s not what I’ve read, to which she says it’s about doing the correct exercises, which we’ll never know because we don’t make enough money to afford (and our insurance doesn’t really cover) physical therapy, or at least the type she says she needs. I say what about going on walks? I don’t think walking is going to make things worse, and she says something like “you don’t know that.”

She has been dealing with this emotional paralysis for over three years, and it’s impacted our relationship detrimentally over time to the point where she doesn’t move almost at all.

Is there someone who might be able to give me some advice on this? I don’t want to be invalidating if she really is unable to walk, but…you better believe she can get up and move to go get sushi. I want her to get help, and I’m literally not sure where else to turn than making a post on a Reddit page. 😂 Thanks to anyone reading this.

I have been sick for 12 years...maybe longer. I went to so many doctors. I went to so many hospitals. My thyroid would get enlarged, then I would go to the ER about that. I would lose weight so fast. I got too sick to work so I lost my insurance. I lost faith in the doctors. There was some part of me that hoped it would just get better and that if it wasn't written down anywhere, the chances of that were greater. Everyone tells you how good you look when you are thin. It doesn't really matter that some mystery illness is at the root stealing your appetite. I stayed away from the docs and hospitals for a while. My parotids would swell and I was a long lost cousin of Jabba. Then it came for my pancreas. I call it my PAINcreas now. That was new and I went back to the ER. Organ pain is a level up. I was certain I was dying! I did what I could to just get through this minute. 8 years later that pain is like riding around with the check engine light on. It stays on, but I can ignore it if I get engaged in something. If you would have told me that I would live with this pain for eight years, I would have made myself a fancy helium hat! I considered making that hat often. It came for my heart. I couldn't ignore that so I found a Dr who treated people with no insurance. She could hear it skipping beats so she put me on some heart meds. My throat dried up. My eyes got crusty. I quit caring about my weight. It wasnt something I was in control of. Losing 50 lbs in 3 months isn't a big deal if you have 50 lbs to lose. I would drop it, then slowly put it back on. I refered to these pounds as my buffer zone. Somewhere along the way, I noticed that stress made everything worse! Stress would give me acute pancreatitis, cause my body to stop digesting food, make my hair fall out and I would look like Jabba again. Where is my invitation to the Hutt family reunion? I found a better clinic for the poor. They had a network. I got to see doctors that actually cared about me. They wrote me scripts for drugs I could afford. They paid for tests from their own pockets. But they didn't have a rheumatologist in their We Actually Care network. They restored my faith in medicine. The hospital decided I was a worthy cause. They hired some company to help me get disability. They did it for free. I got disability on my first application. It took a year. It took 5 months more to get Medicaid. I was in the hospital two months after that having part of my colon removed. Almost a year after getting disability and I finally got in to the rheumatologist. I used to have this daydream where I would go over to their facility and figure out who the doctors were, then just beg them for help. I filled out pages and pages of information for the appointment...grumbling to myself that they never read this crap anyway. She read every word of it. She got six vials of blood for tests, but she confirmed what the GI doctor suspected. IgG4. At first I was relieved. I have lived with this for so long, now my tormenter has a name. But now I am so sad and mad. I'm sad that so much damage has been done. I am mad at the people who told me it was all in my head. I am so mad at all those doctors who said it was nothing and even madder about the damage done to so many organs that maybe could have been slowed. The years of pain. The shame of not being able to work. The assholes who told me I was just lazy. I am trying to tell myself that things aren't really any different than they were two days ago, before that Dr wrote those words down. But somehow they are and I just can't stop crying. I know now it isn't going to magically go away. Thank you for reading my very typical story for this subreddit.

Things I learned along the way: For every doctor that graduated at the top of their class, there was one who was at the bottom.

A doctor may know more about the human body, but I know more about my human body.

Keep records. Know your medications.

If you go to someone for help, but then don't do what they advise, they won't want to help you anymore.

Stand up for yourself. If you aren't going to do it, say so and have your reasons.

Most importantly::: We aren't what happens to us. We are how we respond to what happens to us.

PS...wanna see my colon? I made sure the surgeon got a pic for me. Jk...I'm not showing you.... you sicko.

Hi guys…I am curious about Hydroxychloroquine for Autoimmune issues. Have your issues improved since starting the medication? Does it help with pain? I currently have Hashimotos, a low RF factor, a weak positive ANA that they think is Lupus. I had a high ESR rate too but haven’t had the C Reactive Protein tested yet

I have chronic pain every day that I can’t really tell if it’s muscle tenderness or bone pain. I also have chronic mid back pain by the kidneys.

I was going to have my ANA re-tested because I had bad pneumonia a few weeks ago and it messed with my potassium levels. My joints in my fingers have also been more sore so figured I could ask my doctor about medication for Autoimmune issues. Also TTC so I’m kind of limited for drugs. I just can’t afford to take ibuprofen every day at the amount I have to take to feel relief either.

I want to get some autoimmune testing and testing for Lyme disease. My general practitioner is at a loss after testing me for everything possible in the public system and recommended trying a private clinic. I have POTS but my doctor suspects there is some sort of other autoimmune problem going on. Maybe even mold toxicity. I don’t know where to get help. I’m desperate, any ideas are appreciated.

So I made a post on here before about my ITP and some people mentioned the medication they took but I can’t find the post. My questions are did people find the promacta or Doptelet more effective? and if the Doptelet doesn’t work what else is there? I have been on the promacta for almost 3 weeks now and every week my labs have consistently shown my platelets are below 2. I have been getting the romiPLOStim (NPLATE) every Saturday as well and even that doesn’t seem like it’s not doing much.

Looking for answers, and waiting to hear from my doctor. I have a family history of RA (grandma, mom and sister) and my father has psoriatic arthritis. I've been exhausted, and I have a lot of pain in various joints that I've attributed to being overweight, or because I've broken several bones in my feet in the past.

My RF was negative. My sed rate has been elevated but it's went up to 97 as of my recent blood draw. I am obese so the doctor did say before I took my tests that the sed rate could be high due to that. My ANF was also negative. My CRP was elevated at 2.1mg/dl.

Both my mom and sister both had positive RF. Has anyone else had similar labs and/or experiences?

Someone please help!!

I have this rash that has come up and is spreading across my eye(s). It initially came up about 3 weeks ago and was there for maybe 2-3 days along with some rough spots around my mouth. I washed it with baby body wash and put a baby eczema lotion on and it cleared up. At that point, it was only in the inner corner of my eye.

Almost 2 weeks ago, it came back. Started in the inner corner the same way and I treated it the same as far as washing and the lotion. It clearly hasn’t helped this time, lol. It’s spreading across my left eye entirely now all the way to the outer corner. It has also began to spread onto the corner of my right eye as well as underneath the left eye where it started.

It is VERY itchy to the point now that the skin is actually sore. And it burns whenever I try to put lotion on it. I have a coworker with lupus and she said it resembles some stuff she saw when she was first diagnosed.

PLEASE tell me someone can help me figure out what this is and how to handle it until I can get to the doctor😭😭 thank you in advance!!

I get bumps that look like hives when I eat anything. The bumps you see in the picture appear all over my body, excluding my face (usually) and privates. Under my feet making it hurt to walk, between my fingers, on my palms, on my back... it's a painful existence.

And yes, I do mean any kind of food. I discovered this after months and months of testing with many edtinction diets. The only thing that makes them go away completely is to simply not eat (lovely, isn't it?)

The problem is, these bumps are NOT hives, according to 3 allergists I've seen, as they don't itch and my allergy tests show nothing aside from sesame. I've seen five dermatologists who have no clue what to do, but they're more than happy to send me to an allergist who will just roll their eyes with a "this is not my problem" attitude.

We did a biopsy which showed that these bumps are "leukocytoclastic vasculitis" but my autoimmune blood work came back perfectly fine.

A rheumatologist gave me a 16 day Prednisone taper which actually made everything go away while I was on 10+mg. Well, mostly. I would still get a few bumps here and there but they were very small. On 5mg the bumps came back and now that I'm off the taper they are worse than every.

I'm kind of at a loss what to do next. Prednisone works, but I can't take that long term. I'm not doctor but this makes me think I have an autoimmune problem but my rheumatologist doesn't want to see me again because I don't have blood work pointing to anything.

Any advice? No doctor I've seen even wants to help me deal with my issue because my disease doesn't seem to be actively killing me.

In addition to autoimmune issues, I have primary immunodeficiencies. While we are finalizing a specific diagnosis, my team has suggested I started looking at places in the US that are the best for T cell disorder treatment. Any suggestions of places to look besides the obvious big ones like Cleveland Clinic? I need to start researching locations and insurance. Thank you

Been struggling to get a diagnosis for the autoimmune disease that’s been plaguing me for over a decade. Over the past several years, I randomly started getting these batches of red spots all over my joints (ankles, knees, elbows, wrists, and hips). I went to a dermatologist and they took a biopsy and it came back as superficial perivascular dermatitis (the derm explained basically that this was random inflammation and encouraged me to go see my rheumatologist to follow up, knowing my medical history of having autoimmune flare ups). So I did and during the visit, my rheumatologist submitted lab work for me (at this rate, I hadn’t seen my rheumatologist in a few years, so I needed to go through the process as a new patient) which I went and got after my appointment. And then when it came back he called me.

My ANA was positive and my homogenous pattern came back as 1:1280. Mind you, during my first flare up where I genuinely felt I might be dying, it was 1:160. Went back 3 months later and got bloodwork and it came back the same - positive ANA and 1:1280. To say my rheumatologist was shocked is an understatement. He asked me several times if I was feeling okay or having any flare up symptoms, which I haven’t been experiencing at all. Just these crazy red spots all over my joints (which do not hurt, itch or anything and I don’t have any joint pain).

Anyone else ever have a positive ANA with a homogenous pattern this high but felt normal? Or am I misreading the results of this test and what they’re meant to convey?

Can you have immune complex disease? With low C3 and C4? Or is that an umbrella term for a sub text of diseases, such as rheumatic diseases?

The last few times I have gotten blood tests everything has been normal aside from CRP. Monday it was 21 mg/L. I feel pretty good, I do get aches and pains but nothing major. Have a family history of RA. Just wondering if anyone thinks based on these results alone I should follow up with a Rheumatologist.

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