No Doctor can figure out what is wrong with me

Dryness of mucus membranes; eyes, throat, with muscle pain to me makes me think of showgrins. But also there are HUNDREDS of types of arthritis. Have you seen a genetic counsellor?
I recommend studying human anatomy and physiology as much as possible to track down leads for them to follow. Doctors are so overworked they don’t have time to treat us holistically. I have a lot of similar experiences. For me tho I don’t relate to the trunk numbness but I get numbness. Got tested for MS but all my scans come back fine and all my blood tests are within normal range.

For shitty hair I always think of thyroid and hormones. So much of our oils or lack of are related to hormones; think acne for example.

Take all your blood test results from the last few years and put them in a chart and track the changes. I’m sick of being told my numbers are within normal range if I flare up and notice ok I’m still in the normal range but I just saw a huge spike within that range at the same time as I feel ________. Doctors don’t track everything we think, and they also know very little outside of their speciality and sometimes they’re so busy they don’t even know the recent research theories.

Subscribe to medical journals. Learn to interpret studies. Connect with people in your area. Figure out where the gaps in your healthcare are and imagine ways to solve them. We have to go ALL in to get help. We need to work together wherever possible. We are all trying to get help on these isolated islands so we reinvent the wheel every time. I believe in you. I’m so sorry for your experience. No one should experience all that and not get help. I can only imagine how hard it’s been. You can do this, you can figure it out - DONT GIVE UP

Thankyou so much for responding!I am sorry that you are going through this as well.I was looking at Sjorgens as well as Mythias Gravis and LEMS.These three autoimmune diseases have many similarities.That is the difficult part is that there are so many autoimmune diseases and so many of them are similar.There are so many people in our Family with Lupus and I already have thyroid disease.The only thing I can think of is that the iron infusion,exercising in the heat and possibly covid set this off.I was so tired from those heavy periods for years and working in Healthcare during Covid it would not have taken much.It was like my whole body shut down and went into permanent fight or flight.I remember years ago before I was diagnosed with Thyroid disease my whole body pretty much shut down too.I know extreme stress can bring all of this on if you have a weak immune system.I just got blood work back and my numbers were high for steatosis,Nash,cholesterol and triglycerides,but I think that probably has to do with weight I put on.I use to exercise all of the time and now I can barely walk.My WBC Esterase was abnormal which could mean autoimmune or possible uti and my complement C3 Serum was elevated which could mean inflammation or infection in the body.I have had so much blood work and so many tests,but they are only finding little things.I am taking another long covid test.I had one through Quest Diagnostics,but apparently there is another one through labcorp that tests for more specific findings.I still have to go through genetic testing.Thankyou so much for letting me know about the podcast and Vectra blood panel.I have never heard of that kind of blood panel before.You are correct about the Doctors.They just don't have time because they have too many patients so you have to pretty much figure it out yourself.I have been trying to do my research.Before I was diagnosed with Thyroid disease I had been to about 15 doctors.Even the Best Doctor at John's Hopkins could not figure it out.Luckily a local doctor listened to me and put me on synthroid.I was better in a couple weeks.

Wow you are absolutely amazing! That is a lot of learning you’ve done and a lot of advocating for yourself.

I don’t know Lems so I’ll look that up. I’m printing out medical texts for myself for Xmas haha

I’m so curious about something, my weirdest big symptom is that I get a brutal 3 month+ period whenever I get a corticosteroid injection. The first was tmj injections the same week I got my second dose Moderna and it overwhelmed my system and gave me a movement disorder and amplified all my internal experience problems like executive functioning, asd/ocd traits, anxiety, fear response, brain fog, etc. This was 2 years ago now, lost my job/house/partner and moved away to hide in the mountains where I can control my anxiety responses via isolation. don’t worry about me tho cuz I met someone and fell in love and am finally accessing medical care after being a vagrant since my teens. So things are looking up!

But I want to know if anyone else has experience a crazy heavy forever period with DEATH cramps (full body sweat, full fever plus chills, extreme pain, delusion, things ur going to poop and puke at the same time so bad u sit naked in the shower and ur limbs and eyes don’t work cuz u have to go to another world of shapes and colours to get thru the pain, then it passes. My partner took photos and I looked like I was in labor! I thought it was an hour and half and he said the whole episode it’s like 20 minutes. So it could be painful cysts bursting?)

I always leaned hyperthyroid I think of having suuuupet light periods so to go from not even needing to use more than like u tampon or pad per month to heavy huge clots was wild!

Looking for others with this extreme response to corticosteroid injections. Or anything relevant!

In your position, I would seek help at an academic medical center or a large group practice such as the Mayo Clinic. These institutions bring many minds to bear on a patient's problems. I have a great primary care provider, but when I needed an eye operation, I went to the Johns Hopkins Hospital in Maryland. I never regretted the decision: at the age of 81 years, I have great functional vision.

I bet you have fibroids or cysts.If one bursts it is the worse pain that you can experience.They can cause constant pain in your lower back and pelvis area too.Some will shrink on their own over time,but some will grow bigger and can burst.If you get an ultrasound it will show if you have cysts. Have you been checked for endemetrosis?That is harder to detect,but that can cause extremely heavy periods,cramps and constant pelvic pain as well.Endemetrosis can come on as you get older too.Around the time you are going through perimenopause because of the hormone shift.Some people change their diets or go vegan to balance their hormones which can help with regulating your periods.Stress will also wreak havoc on your hormones.Yoga,pilates or walking can help relieve stress.I always had bad cramps with my periods,but they were for the most part normal.A few years ago that completely changed and I had severe heavy periods that would last 3 weeks every month for 3 years.The Doctors could not figure out what was causing them.I just assumed it was perimenopause.I got the iron infusion because I became anemic and now I am in a worse situation than I started off.

Oof! Thanks for all that insight.
My mom “had” endo before giving birth to me - she had a couple miscarriages. I’m an only child because it was so hard.
I’m waiting on the gyno referal now and I’ll see what they say but I have SUCH bad urinary problems that I want to know if there endo there. Looking back at all the times I went to hospital for cramps as a teen and was mocked “you know this will happen every month right?” >> it would be foolish to not keep endo on the table. I am 36 definitely experience the most hormone problems since ever.
I did get an ultrasound during the 3 month period but it was at the end of the 3 months and during a spotting few days. The report said it showed a hemhorraging cyst, small, with light shadows or echoes or something. No calcifications or venous nature. But my gp said my scan was normal and never mentioned it. When my tailbone - lumbar spine was scanned for sacral pain the report said mild pudendal bulge: which she also didn’t mention and said my scan was normal.
Which sure maybe those things are normal but when you think I have a sensitivity disorder and other complex conditions …why WOULDNT all the little things matter? Maybe the mean more all layed out beside eachother? I find it funny that they find something where I have great pain and then say it’s not related?
I have also started getting mammograms because of getting a hard lump in my breast. My mom and I have small bewbs with dense tissue. Hers were described as ropey. My lumps they said they posit that it’s a fibroadenoma. Another likely inconsequential things but line that up beside potential cysts, pain, urinary probs, lower back pain, hormone problems, etc etc

I hate not respecting the intellect of the people in charge of my health, life length, and pain levels. Shits wild.

Not to mention things like growing up in constant pain (I think pandas/pots/sjorgens/postviralexposuresyndrome) having flesh eating disease at 16 causing cfs (they didn’t listen about that cuz I was a homeless teenager so obvi I lie and drug seek) then got hep c, amplified it all pelvic pain and tmj too, did interferon, and there came the fibromyalgia and myofascial pain. Etc etc and that’s not even close to everything but like come on - how can “scan was good” be the only answer. I want a doctor who likes to be a detective and has the time to be interested and curious.

in reply to @j77 You know, I had an two iron infusions this past summer and had allergic reactions after each infusion, even though I was given IV benadryl, and then it was weeks before I felt any positive effects of the infusion; I am told this is common. I truly felt sick for a few weeks following each infusion and swore I would never have another one UNTIL I began noticing that I felt like a racehorse so to speak.
A friend, actually someone I met on this platform, sent me an email this morning suggesting that while my clinicians have no clue as to what is wrong with me other than that I have no immune system and more likely than not autoimmune disorders, that perhaps I am "helping" them in some way on their way to figure out what is wrong with me. I do plan to donate my body to science when I die with the hope that upon studying my various parts, students will learn something different. I don't mean to sound morbid when I say this, as I do have on my advanced health care directive that I am not an organ donor, with the exception of my corneas if they are viable for someone to see. Afterall, I am an artist and a very visual person.
I sometimes feel I have lost my resolve, and have finally come to terms that maybe my doctors really don't know and that I am expecting some kind of miracle drug, procedure etc that will "cure" me. However, I know that we are all imperfect, even the best of doctors are not magicians, although many would like to believe that they are. I believe that my doctor "usually" has the best intentions, but I accept that he is limited because I have such a variety of different symptoms. Being an information junkie, I often ask too many complicated questions or challenge my doctors because I have read so many different scientific articles online. Not Dr. Google, but medical journals and things of that nature. I have also connected with different organizations such as the Immunodeficiency Foundation, a non profit organization which has been very helpful to me. There is another wonderful non profit, the 50-State Network, and I have joined them to be an advocate for those like you and myself who are searching for answers, writing to congressmen/women in an attempt to persuade them to pass legislation for those of us who might have insurance, but are denied discounts on expensive medicine just because we either have Medicare, an Advantage Plan etc. For example, my neurologist prescribed Nurtec for migraine headaches. This is a new drug, and I think even Lady Gaga is one of the manufacturers "spokeswomen." I thought the drug was a miracle, but after filling it twice my copayment went up about 500 percent. While I was directed to the manufacturer for some financial support, I was denied the same because I have Medicare and an Advantage Plan. Had I known what the cost of the drug was, I never would have filled it, because after filling it twice I was thrown into that Medicare Donut Hole. Think: BIG PHARMA.
It's really too bad when we cannot get a straight answer, or are told that because a certain test result is within the "normal range" there is nothing to be worried about, when in fact there may be. For example, I get frequent UTI's, which can be related to one of my conditions. The urine cultures come back with blood cells etc, yet I am told my test results are "normal" because the culture was negative. I will be having a cystoscopy next month so my doctor can look inside my bladder. If you also get UTI's, I would recommend UTI FREE, a website developed by a doctor who had the same problem I have been having, and she developed the site for women like me/you who may get frequent infections. The information on that website is over the top fantastic and you can even download a questionnaire that you can take to your doctor so you remember to ask the right questions. I realize I am going off on a tangent here, but I saw your response and wanted to get back to you, especially because you mentioned being an artist and understand how helpful art of any kind can be of such comfort and help when we are afflicted with just about anything.
There was a fellow on this site who spoke about the iron infusions because he had either had an infusion or had done some research into what happens when one gets an iron infusion, and he declines to get one, and instead found a company that dispensed liquid iron. I cannot take iron supplements because it causes massive stomach issues. If you need another iron infusion in the future you might want to consider the liquid iron, as it might be what has caused your problems. A lot of information can be found on NIH or the Lancet. Or the Cleveland Clinic. Reliable sources of information that is tailored for professionals, but of course, their articles are also available to the public and are easily understood if you know basic medical terms and things of that nature.
It's great to learn that you too are an artist, as I know without it, I probably would have "done myself in" by now, however, since I became sick, I discovered that my creativity expanded like never before. When I am working late at night, listening to music I feel as though I have been taken to some kind of "outer limit" and my creativity explodes. I am sure you know the feeling, and it can be very exciting to step back in awe as you look at what you have created.
Like you, I went from fairly healthy to not in a very short period of time. Interestingly enough, all of this happened after my "hearing dog" had to be "put down." However, she was always putting her nose where my liver and pancreas are located, following me into the bathroom and things of that nature. I was certain she was on to something, and while I do not have cancer(yet), my doctor was very interested in my experience. In fact, I somehow came to terms with her death by convincing myself that she knew I was sick, and "leaving" me may not have been intentional, she left for a reason. I hope this makes sense. She flew off the sofa at dinner time, landed wrong on her leg and let out the loudest yelp I had ever heard. She was a pitbull mix and NEVER barked unless I told her to "speak." Initially I felt great guilt because I did not have the $4K to put her leg back together, but in hindsight, I really think she "knew." I think you "get it."
Stay in touch. I want to be healthy just like you, however, as I have said before, being sick has really turned me into a much better person in so many different ways. I never really thought highly of myself when others did until I got sick and began to understand the importance of gratitude, humility and things of that nature.
I am so sorry about your dilemma, and while I cannot get inside your head, I do understand how you "might" be feeling, and I wish I could offer you more than these words tonight. Prayers are good. I pray to the "universe." Whatever works, right? We can do this.

Have you had a full immune work-up? I was recently re-diagnosed with common variable immune deficiency (CVID). They will look at how much IgG, A or M, the subclasses of IgG along with a couple other tests. In order to be formally diagnosed, you'll get a pneumonia vaccine and a month later, tested for antibodies the vaccine should create. Out of 23 antibodies, only 3 had a two-fold response so I failed the "challenge". IVIG is the treatment. UTI's are very common in CVID as well as any bacterial infection-especially upper respiratory, sinus, ears infections.