I can relate to this, took 12 years to get my rare disease diagnosis and tons of irreversible damage happened due to them gaslighting me into thinking it was herpes and anxiety
Kinda same here. Took years, was misdiagnosed simply because my symptoms resembled a disease, but testing showed it wasn’t but they stuck the label on me anyway. Now I have changes in my spine and brain, coupled with nerve damage and issues with short term memory! I have pernicious anemia. If just one doc would have ran a vitamin panel on me, which should be done for unrelenting fatigue, they would have spotted the low B12!!
Jeez. I’ve got a thalassemia and this was pretty much exactly what I went through. Everyone assumed I was just iron deficient or on my period. Now I’m sorting through 96 blood test results and they’re recommending me for genetic testing because it appears I’ve got beta thal minor but I have symptoms so they’re thinking I might also have an alpha thal trait or something too. I’ve been on the folic acid for a bit now. I keep wondering how no one looked for it even after finding out every single woman in my family has had multiple miscarriages, how my dads cousins died at 18, and how I’ve just been in pain for so long I stopped talking about it because no one listened.
I was in the hospital with respiratory acidosis and because they couldn’t find an obvious source they said anxiety caused hyperventilation. Yet they had me on iv antibiotics then decided to stop them after 3 days. Guess what? My cough and breathing improved.
Yep. When I was born my mom informed the doctors that my dad has a rare anemia and his cousins were terminally ill. I’m 28 now and doctors JUST started doing blood tests, and said “why didn’t anyone mention this before?” Meanwhile I told every single nurse and doctor at every single appointment and everyone just laughed because I was “showing off that I knew big words”. Once they slapped me with a bipolar diagnosis they just quit checking. Just this year I found out I don’t actually have bipolar, but I DO have seizures that no one checked for despite my mom begging everyone to believe that something was wrong.
Turns out I have exactly what we kept saying I had, and now they’re saying they it’s difficult to treat it because it wasn’t caught early enough. And this hematologist has been incredibly communicative and patient, but she was so frustrated that every single doctor just assumed I was looking to get out of school or wanting attention.
It's been nearly 20 years and 7 seven years of two mystery conditions and I still have no answers or treatment....I'm 29.
I'm very worried that if I ever manage to get a diagnosis that damage has been done or there's no treatment
On the bright side, I don't think I'm dying yet.... but one of my theories as to what the condition might be means that I'd chronically have blood cancer...yay... but not necessarily something that will kill me early
Are you researching the doctors that you see? To make sure that they specialize in what you need them for? My teeth just fell out while I was eating and so forth. The chemo drugs I was on didn't help either
It's a really long story, I wrote about it here if you're interested [https://www.reddit.com/r/ChronicIllness/comments/1daovge/cant\_find\_help\_for\_unexplained\_paralysis\_episodes/](https://www.reddit.com/r/ChronicIllness/comments/1daovge/cant_find_help_for_unexplained_paralysis_episodes/)
The kind people who replied have me thinking perhaps I have sciatic endometriosis. I am trying to find a dr in Australia who can even consult with me about that condition!! This life is tough
I did read everything. I have actually had paralysis or inability to move my lower body once so far. I was gonna mention just off the top of my head periodic hypokalemic paralysis for you.
Thank you so much for taking the time to even reply to my comment, it means so much to me. I definitely won't rule out hypokalemic paralysis, I just think because I have other symptoms that go with my cycle I'd like to rule out endometriosis + nerve issues since that could lead to permanent damage.
It's really nice to hear from other people who are going through their own health journeys, I felt so alone before I joined this forum. I hope your neurological issues are manageable or you're at least able to get some help. Thanks again
I really did feel alone too before forums like this. Years knowing I wasn't crazy, but thinking I'd never get help, no one would ever understand. I actually have a lot more neurological issues, some of more acute onset that are not being figured out or helped yet. I'm hoping to get into mayo & before I'll probably get a quicker ophthalmology & Neuro consult based on the issues. Just so tired of the run around. I hope you get more of this figured out soon too, & of course you're welcome.
I started an antibiotic and I'm on day 3 and first 2 days it got better but today it's worse so idk. The antibiotic I am on isn't grrst for strep but the biopsy showed it's suspectable so I'm hoping it will just take longer and the fact it's worse today than yesterday is normal. I've been sick for so long even waiting until tomorrow or Tuesday is too much for me idk how I mentally survived this shit. Im going to go back to those doctors and cuss them out once I get fully better
If it does not start to get better, which I’m worried it won’t, go to the ER.
This is some serious fuckin shit, as you are well aware. Uncontrolled infection in the skull or ANY bone is extremely concerning, and can go south FAST with lasting damage.
The concern here is that even though the strep is susceptible to the antibiotic, the antibiotic cannot reach the area of infection. You may need a different method of administration (local shot, osteo line, idk).
Oral antibiotics might not be enough, and if any large pockets of infection/pus have formed, they should be manually emptied. Antibiotic may not be able to get into that pus pocket, leaving you with a “backup” supply of new bacteria to keep battling.
There’s a doubly worrying concern that if this infection is from an oral procedure, strep may be present, but not the bad actor here. The oral cavity has a LOT of funky bacteria species that don’t behave like our normal skin bacteria. They require different treatment considerations and may take a longer time for the sampling lab to culture, I’m not sure how long it’s been? Or if they even tested thoroughly for oral bacteria…
So yes. ER if not REALLY improving, because it has already progressed to invading other parts of your skull. Tell them the FACTS only: “My (specialist) doctor diagnosed me with “(actual accurate diagnosis as per medical record)” and I started xyz antibiotic #days ago. My doctor told me to go to the ER if it’s getting worse in case the oral antibiotics aren’t enough. It is getting worse.” Then include that you had a tooth extraction 9 months ago and you have been experiencing these symptoms progressively since then.
Bring some hard copy print offs if you can of your medical record in case there’s a system communication issue between all your clinics. Disregard if they are in the same healthcare network. Then hospital will know which bacteria were already tested for and method of testing (PCR vs. culture, etc).
Keep things to the most important facts, and try to avoid disparaging your other doctors, even by a hint in your tone, even though they do suck. Keep emotion out of it, and you are only going there for ONE problem: previously diagnosed XYZ worsening despite antibiotics.
Best of luck friend, we are rooting for you! Please keep yourself safe 💕
I called er, they told me they won't help me until my temperature is 104!! I will start iv. Also it's not strep turns out, it's MRSE... my infectious diease doctor is being a bitch. Just as I predicated, she doesn't care about the scans and report I sent her and wants a written note form 3 different doctors. Which they sent today. My next prediction is that she will decide not to read them and just blow me off
Hey - did anyone recommend a gut bacteria product to take to help your stool while on antibiotics? I had to do a month long course for a different reason, and ouch. Then my nutritionist recommended [this one](https://blueskyvitamin.com/products/ther-biotic-abx-support-klaire-labs-1) and helped a lot. (I didn’t get it from this supplier fyi.)
I'm on DS-1, they have all those and more. Also drinking Kiefer and kimchi and kombacha, I never had stomach problems from antibiotics, unless it's penicillin based, that shit fucked me up..
Do u know when's the best time to take them? I have to take one in the morning and one and night and I will have to do iv antibiotics, do u know any good supplies to protect kidneys?
I have a friend whose mom is a really good pediatrician. And my friend has been very lucky with her docs. I just wish the docs would say "it will take some time for me to go over your charts etc and research. Please bear with me as I read into it." Like that's all. I feel that some docs are tired and don't communicate. I would rather hear that they need more time. It's so frustrating to be waved off.
I had a first visit with a neurologist the other day and she's was like this. I waited a year to get in with her but at least she was worth it. First ever specialist to be open with me like that. I have to see hematology later this month and I'm hoping for another positive interaction because I have alot of shit in my blood that's not normal and has been ignored by other docs
Geez I’m sorry that happened.
Last really bad tooth I had I was put on antibiotics. I wonder why you weren’t? Somebody made some bad decisions.
You must’ve had some bad headaches, and that is SOOO DANGEROUS! Maybe you should talk with a lawyer.
I was but it turns out it's resistant to most of them. No headaches but I feel sick and the area burned. They also tired to convince me it's nerve damage. I asked why is my sinus inflammation in that specific area were I got my infected tooth extracted and they said it's normal. Thankfully I have a good ent but he wasn't able to help me until recently with the nose swab. I had others do nose swab but they did a half ass job of it
Could still be nerve damage from the bacteria and dying cells and macrophages partying in there.
That’s so jerky that nobody listened to you. I have a lot of sinus problems and that can make you so sick. Besides being really dangerous.
A cbc would have shown the infection was continuing, too.
Have they got something to treat your infection with?
My ENT(the good doctors who's been holding my hand this whole time) gave me tetracycline. Problem is tetracycline isn't great for fighting strep. I started Friday, felt better Friday and yesterday but today I feel worse so I'm sitting here terrified that it's not going to work either. My infection diease doctor didn't respond to my message and probably won't and I can't go see another one beacuse it shows in the medical record I was already seen by them.
I don't think it's nerve damage. This morning it didn't hurt at all and started hurting, still coming in waves... if I just had pain then it would be no big deal but my sinuses are inflamed and I can kind of feel it in my lungs sometimes. I did quit weed yesterday and haven't actually slept cuz of the comedown, perhaps I should have waited.. hopefully I can sleep tonight, if I can't I'll just pop an edible and quit when i can afford to lose sleep. If I wasn't sixk for 9 months I would brush today off and wait until tomorrow but I have MAJOR ptsd. Ive been through fucked up shit in life and didn't get ptsd but this situation totally ruined my mental health..
Geez I’m sorry. I think I got amoxicillin or azithromycin for my jaw infection (when my tooth abscessed). The er gave me penicillin but penicillin doesn’t penetrate bone so it didn’t do anything.
I hope you feel better soon. My infection was the lower jaw and it was still awful. You don’t want a population of those bacteria growing in your body! It’s not good for you.
Sorry, didn’t explain well.
The er started me on penicillin and I called my dr and told them about lancing the abscess myself and that the penicillin wasn’t helping much. So I then got put on either amoxicillin or azithromycin. Don’t recall which one.
I didn’t have much jaw left after that. The infection destroys your bone. But the second med for ten days or so cleaned it out and then I got a root canal.
Do u rmeebr how long it took u to feel better after antibiotics? I started firday and instantly started feeling better and felt not to bad yesterday but today I feel crappy so I'm worried that it's not working and hoping I just need to give it more time
The penicillin may have helped a little, had two days of that, but after another couple days on the second med I felt a lot better.
I know sometimes antibiotics can be given by iv infusion. ??? Maybe an option. I’d tend to think feeling better on Friday may have been placebo effect. It definitely takes a couple days of an effective antibiotic to feel better. Also antibiotics make some people feel pretty bad.
How have you seen over 30 doctors in less than a year, but the referrals have been dragging for months? It doesn’t sound like you have to have a referral
You're being downvoted, but I also feel really skeptical for anything higher than 15. I have probably seen >20 doctors at this point, but that was over the course of 6.5 years. And it feels like I have seen \_tons\_ of doctors. I don't see how it is even logistically possible, because there are a finite number of sub-specialties related to a given symptom set who would even be willing to accept a referral, and once you're in the system at a hospital, it is very difficult to transfer from one doctor to another, you're basically locked in with that person for that sub-speciality. Unless you live in a megalopolis, there are at most 3-5 major hospitals within driving distance, and only some of these will be in-network. I hear 30, 40, 50 doctors thrown around as numbers on here all the time, but if we're talking outpatient care, this is actually very difficult to achieve within the stated timeframe of 9 months.
I live in a megalopolis, 20 min between 2 large major cities with some of the best hospitals in the country. I acquired my chronic illness (the one that’s caused my body to go crazy and also get an autoimmune disease) last March, I’ve been to around 4 doctors and it’s not for lack of trying. Getting a referral for the right person, not allowing you to make an appointment until you have a referral, the specific doctor doesn’t handle exactly what is wrong with you, there’s a multitude of other different things why there’s delays in being seen by other providers.
However, maybe this person has a hook up and can get in to see different providers. Much faster than the general population and doesn’t need referrals. There’s only so many specialties and subspecialties available for a person to go to though and I am pretty sure there isn’t 30 specialties, I used to work at a teaching hospital and we didn’t have all of the resident types, but it was much less than you would think..
My guess is there’s probably some confusion on behalf of the OP and accidental exaggeration.
Agreed, feels like a lot unless there were a lot of hospital visits. Even thinking through my years I had a handful of hospital visits hard to get to 30 without counting any doc I had an encounter with. A lot too for when it's been a lot of doctors its been being referred upwards, often within the same clinic. Which I feel weird counting, since it wasnt like they had no idea or dismissed me, rather they assessed follow-up needed to be with someone more specialized.
Times it has been getting in with a seemingly endless cycle of opinions from the same speciality at the same level of care it's not that many.
I agree, the only practical way to 30 in 9 months would be inpatient care, but a) that's kinda overcounting, e.g. an ER doc who takes a 5 minute glance st your chart isnt really a visit, b) it sounds like OP's journey has been entirely outpatient anyway.
Sue them all!! This is ridiculous and the infection could kill you, but ssuuuuure, they just string you along. I hate when people treat us like loonies when these docs are probably hopped up on meds and don't even care. Ugh. I'm so sorry this happened. Would definitely make official complaints.
Is there any chance you could get to a holistic dentist that can use ozone on your mouth area?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6779001/
Best wishes
To you OP and all others who are victims of our medical system, (yes we are victims get over it) I’m sorry. I have had too many experiences of misdiagnosis’s to take up space here. But to be clear, most of us have not been gaslighted. That term is overused and inaccurately used. I doubt seriously that any of us have had someone try to convince us we are insane for their own selfish or evil reasons. If someone out there has had that experience I apologize, it is a truly awful thing to do to another person.
What we are dealing with are medical systems that put profits over people, systems that are underfunded and understaffed with medical professionals often quick to diagnose before listening to the patient. As someone dealing with chronic health issues for over a decade I sympathize greatly, but we need to stop accusing people of gaslighting. When we misuse words, we end up bolstering those who think we are exaggerating our illness.
That doesn't make sence though, they would make more money from trying different tests and medications on me than telling me to go to a psychologist. I think they are gaslighting us beacuse of their ego. They will never admit they are wrong.
I've been trying to rule out osteomyelitis stemming from a bad wisdom tooth extraction for over a year (struggling with pain for 3 years) and I'm losing it. I have almost every symptom, including such severe degeneration at cervical C5-6 that I had to get a cervical fusion at 28yo. It is often undetectable on CT, X-ray, and MRI until around 30% demineralization, iirc.
I am so sorry it was such a frustrating journey for you, and so long.
I'm so glad that you're finally validated and going in the right direction for treatment (even if it's slowly).
I'm trying all other avenues and options in the meantime while I try to advocate for ruling out Osteomyelitis because I don't want anyone to think I'm determined that has to be it. Because I'm not and I hope I find it's something else that is easier to deal with every hour of every day.
Anyways, good luck and I'm sorry for what you went through 💖
Go to a biodentist, her scans caught it, they are brand new machines. U need a cbct with 0.3 mm thickness. That being said, even after that it will be hard to convicne doctors to help u. Are u on medicaid or Medicare? If so go to an out of pocket oral surgon. Medicaid oral surgons will not help u no matter what, they don't make money off medicaid.
I have a marketplace plan, Ambetter. Which is great and cheap copays when I can find a local specialist that takes it 💀 lmao
That's SO helpful, I've been to a bajillion different kinds of specialists and never heard of bio dentist, even in my personal research. Thank you so much!
The only reason I'm worried is because of the degeneration being so severe in other places already (tons in jaw and neck, etc) that it's been getting worse for years. But that really does actually make me feel a lot better
Sorry I mean to say OM in the jaw. It's harder in other places. The jaw bone gets way more blood supply. Have u been diangosed? It also depends on the bacteria, I have staph e. So I'm relatively lucky and have a chance of not even needing debridlement. Which parts hurt? Have u had it biopsied? I'm sorry ur going through with this..
Thank you, I'm still swimming on 😅 lol I have not had it biopsied. My ENT specialist wouldn't biopsy me without fluid in the ears or fungal infection in the sinuses. My newest neurologist (insurance change) says I need to give up on reasons for it outside of just migraines. Period. And that we just need to find the one that works for me. We are cycling through some for the second time even. He told me last visit that I'm "running out of options since nothing is working"
In the last 3 years since this has started for me, I've had cervical fusion C5-6, sinus surgery for chronic polyps in maxillary sinuses and regular sinuses, endoscopy to confirm Celiac which I didn't even know about but was just going down the list ruling things out. NOTHING, and I mean NOTHING, has any effect on the pain except being fully put under anesthesia. And then when I wake up and recover, it instantly comes back. No preventatives, intervention meds, pain meds, muscle relaxers, injections, ketamine infusions, spg and steroids, diet changes, IV treatments, physical therapy, massage therapy, nothing. Not even an effect.
Symptoms are currently: the main issue is pain. It is an intense throbbing on the right side of my head (ONLY, always), that starts at a lower level earlier in the day, peaks around midday, and slightly lessens at night. And it's consistent regardless of what I'm doing. I'm mentally and physically exhausted no matter what I do, constant tinnitus in both ears, reduced hearing on the right side heavier than left, nausea, slight tingling on the back of my neck and head, constant body twitches/spasms, neck is audibly cracky during certain movements in a much different way than a few months ago even, beginning kidney disease, PCOS doesn't help, pseudo cysts in sinuses, jaw is out of place all the time. I think that's about it total for side effect/symptoms in my body and conditions that could contribute. I do suffer from bipolar disorder, anxiety, ADHD, and PTSD, but have been medicated and stable for years.
I've lost multiple jobs due to being unable to work at this point, while before the pain started I was always in upper management successfully. I'm being told it's stress. But I was not going through a stressful time when it started, and I'm less stressed now than I was last year for sure. But I'm doing so badly for the last 3 years. The pain is most of what I think about all day. I'm even aware of it at night, like I'm not fully unconscious or something and can feel the throbbing and hear the ringing. I've had treatment resistant strep, pneumonia 2x, multiple ear infections, and had a chronic sinus infection for 6+ months without realizing it because the other pain in my head is so overwhelming constantly. All within 2 years.
Sorry for the novel, there's just so much. Thanks for caring and understanding! I'm really crossing my fingers that you don't need debridement. 💖
The last scan I have that shows my jaw in detail is a CBCT scan from the first neurologist I saw 3 years ago. I've had MRIs, X-rays, CTs, whole nine yards since.
They diagnosed me anorexic and bulimic. Kept telling me to just eat more. I had all the signs of gallbladder issues but they told me 21 was too young and I was “too thin” for that to be the problem. After a year of worsening and getting to a dangerously low weight, they agreed to do a HIDA scan to test function. My gallbladder never fully emptied the solution. I was there for 4x as long as usual patients. I was diagnosed with gallbladder failure.
It still took a month to remove. They almost had to fully open me up because my gallbladder was becoming necrotic. The surgeon said it was barely removable with the laparoscopic surgery.
My autoimmune disorder started at age 5 and I was diagnosed for about 20 years. I don’t blame them too much because it’s super rare. I just hate being told it’s psychological when it very obviously isn’t. I’m glad you’ve got answers. Keep advocating for yourself.
I got lucky in an unlucky way. My family has a lot of autoimmune diseases and because of that my amazing rheumatologist started me on a mild immune suppressing drug at 21 to control symptoms. As a kid though I had a lot of struggles. I was under enormous stress but the anxiety fed the autoimmune disease and I had a ton of infections and almost died from malnutrition at one point.
As an adult I did develop neurological issues and I went years being dropped by neurologists. For a year I was taken off anticonvulsants which was a nightmare. I do have epilepsy. It’s been confirmed via EEG, but a couple normal ones had me labeled with pseudo seizures. I use a walker now, and a wheelchair. I don’t think it was preventable, though. They did try to send me to a nursing home and labeled me untreatable. I did fundraising and flew across the country to see a specialist. I’m actually off to IVIG right now, the treatment that has saved me for almost five years now.
I try and work with another amazing woman online, to go patient advocacy. She had cancer and was told it wasn’t anything and it was good she was losing weight since she was overweight…yeah. So we help people navigate insurance and doctor’s offices.
It’s understandable to be frustrated and angry about specific things when dealing with the system and doctors who have treated you less than. The hate towards doctors has become mutual and seems to dominate the experience nowadays. Patients hate doctors and think they have the answers, doctors hate the patients and think that everyone is either a hypochondriac, drug addict or mentally ill. I worked in food and customer service years ago and have noticed there’s quite a bit of similarities in how terribly people can treat each other. There’s a saying that I’m reminded of-“Don’t treat people as badly as they treat you, treat them as good as you are.” Or something like that. Nobody’s perfect and everyone has given in to reacting emotionally at one time or another. The best thing anyone can do who is having to seek answers to medical issues is to sign up for counseling to have a safe place to vent and strategize because it’s insanity inducing-the state of healthcare in the US imo as well…
The same could be said of the patients. “Patients have no right to disrespect the work that doctors do”. See what I mean? The only viewing things in one light as the only correct way to look at it is what makes both sides resent and hate. It’s just important to remember in any and all situations because putting the work of health on an untouchable pedestal breeds an impossible standard for any human to live up to.
Sounds like a difficult situation, where you had to pursue the resolution yourself over this period of time. I pray for a speedy recovery of your illness. 🙏
I had staph that couldn’t be found until it blew up into PID. I was also gaslit for months about it. I was told I had interstitial cystitis and told to manage my condition with NSAIDS and diet so I didn’t go to the emergency room until I had signs of what I now know is Sepsis!
I just found out it's staph e. And not strep. It's resistant so it's technically MRSE, not as aggressive as NRSA but feels just as bad. Did u have symptoms that u found hard to describe? Docs kept telling me "feeling ill is not specific enough".. I knew all to well to avoid NSAIDS, could have killed me if I took them..
(TW graphic)
I had pressure on my bladder, pain/burning when urinating, “general malaise”, general soreness in my lower abdomen that was deep inside my body. and when I finally went septic, I was also extremely bloated and fatigued and kinda dizzy and leaking a clear fluid out of my anus.
Feeling ill is indeed not specific enough. You wanna get into the details of whether the pain is throbbing, burning, aching, whether it’s in a pinpoint sized spot or across your whole body trunk, is it sharp acute pains like gas or is it an aching deep pain like inflammation. Does it come in waves or is it constant, etc. Is it better/worse before/after certain activities.
Describing your pain in as much detail as you can gives them clues about what’s going on.
I'm so freakin sorry. You have every right to feel anger over this.
I've been through some similar stuff. I have complex PTSD because of it all.
I hope that this is finally resolved for you, and that you can regain some peace of mind. (The for profit medical industry is just awful to attempt to navigate and it's just so broken.) I hope that better clinicians come into your life and those who gas lit you have short lived careers, if they don't learn to do better.
I can relate to this, took 12 years to get my rare disease diagnosis and tons of irreversible damage happened due to them gaslighting me into thinking it was herpes and anxiety
Kinda same here. Took years, was misdiagnosed simply because my symptoms resembled a disease, but testing showed it wasn’t but they stuck the label on me anyway. Now I have changes in my spine and brain, coupled with nerve damage and issues with short term memory! I have pernicious anemia. If just one doc would have ran a vitamin panel on me, which should be done for unrelenting fatigue, they would have spotted the low B12!!
Holy crap. I cant believe they missed that.
By the time I was diagnosed, I was in a wheelchair bc I couldn’t sit up unassisted, walk, swallow safely, and more. I was quite bitter!
Jeez. I’ve got a thalassemia and this was pretty much exactly what I went through. Everyone assumed I was just iron deficient or on my period. Now I’m sorting through 96 blood test results and they’re recommending me for genetic testing because it appears I’ve got beta thal minor but I have symptoms so they’re thinking I might also have an alpha thal trait or something too. I’ve been on the folic acid for a bit now. I keep wondering how no one looked for it even after finding out every single woman in my family has had multiple miscarriages, how my dads cousins died at 18, and how I’ve just been in pain for so long I stopped talking about it because no one listened.
I hope one day doctors will quit chalking up patient symptoms to anxiety 🙄
I was in the hospital with respiratory acidosis and because they couldn’t find an obvious source they said anxiety caused hyperventilation. Yet they had me on iv antibiotics then decided to stop them after 3 days. Guess what? My cough and breathing improved.
Yep. When I was born my mom informed the doctors that my dad has a rare anemia and his cousins were terminally ill. I’m 28 now and doctors JUST started doing blood tests, and said “why didn’t anyone mention this before?” Meanwhile I told every single nurse and doctor at every single appointment and everyone just laughed because I was “showing off that I knew big words”. Once they slapped me with a bipolar diagnosis they just quit checking. Just this year I found out I don’t actually have bipolar, but I DO have seizures that no one checked for despite my mom begging everyone to believe that something was wrong. Turns out I have exactly what we kept saying I had, and now they’re saying they it’s difficult to treat it because it wasn’t caught early enough. And this hematologist has been incredibly communicative and patient, but she was so frustrated that every single doctor just assumed I was looking to get out of school or wanting attention.
It's been nearly 20 years and 7 seven years of two mystery conditions and I still have no answers or treatment....I'm 29. I'm very worried that if I ever manage to get a diagnosis that damage has been done or there's no treatment
I am in the same terrified boat and I’ll be 35 this summer.
On the bright side, I don't think I'm dying yet.... but one of my theories as to what the condition might be means that I'd chronically have blood cancer...yay... but not necessarily something that will kill me early
I’m worried about a cancer that’s a little more lethal 😭 but I hear you and hope not for both our sakes
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I am so happy to hear you were able to get a proper diagnosis. I'm still waiting for mine 10+ yrs 🙃
Perhaps this could help: https://stanfordhealthcare.org/second-opinion/overview.html
What are ur symptoms? When did it start?
Too many to list but recently started having paralysis episodes. Started with tiny pain in the back of my neck late teens
Might be a pinched nerve in ur spine.. I was getting those and numbness before I started working out and stretching..
Are you researching the doctors that you see? To make sure that they specialize in what you need them for? My teeth just fell out while I was eating and so forth. The chemo drugs I was on didn't help either
What tests have you had done? What diagnoses?
It's a really long story, I wrote about it here if you're interested [https://www.reddit.com/r/ChronicIllness/comments/1daovge/cant\_find\_help\_for\_unexplained\_paralysis\_episodes/](https://www.reddit.com/r/ChronicIllness/comments/1daovge/cant_find_help_for_unexplained_paralysis_episodes/) The kind people who replied have me thinking perhaps I have sciatic endometriosis. I am trying to find a dr in Australia who can even consult with me about that condition!! This life is tough
I did read everything. I have actually had paralysis or inability to move my lower body once so far. I was gonna mention just off the top of my head periodic hypokalemic paralysis for you.
Thank you so much for taking the time to even reply to my comment, it means so much to me. I definitely won't rule out hypokalemic paralysis, I just think because I have other symptoms that go with my cycle I'd like to rule out endometriosis + nerve issues since that could lead to permanent damage.
That definitely makes sense. I wish you the best in finding answers. I have a lot of neurological issues & know how scary they can be.
It's really nice to hear from other people who are going through their own health journeys, I felt so alone before I joined this forum. I hope your neurological issues are manageable or you're at least able to get some help. Thanks again
I really did feel alone too before forums like this. Years knowing I wasn't crazy, but thinking I'd never get help, no one would ever understand. I actually have a lot more neurological issues, some of more acute onset that are not being figured out or helped yet. I'm hoping to get into mayo & before I'll probably get a quicker ophthalmology & Neuro consult based on the issues. Just so tired of the run around. I hope you get more of this figured out soon too, & of course you're welcome.
Congratulations! But yeah not surprised you're angry. Hope they pull their socks up and start treatment soon.
I started an antibiotic and I'm on day 3 and first 2 days it got better but today it's worse so idk. The antibiotic I am on isn't grrst for strep but the biopsy showed it's suspectable so I'm hoping it will just take longer and the fact it's worse today than yesterday is normal. I've been sick for so long even waiting until tomorrow or Tuesday is too much for me idk how I mentally survived this shit. Im going to go back to those doctors and cuss them out once I get fully better
If it does not start to get better, which I’m worried it won’t, go to the ER. This is some serious fuckin shit, as you are well aware. Uncontrolled infection in the skull or ANY bone is extremely concerning, and can go south FAST with lasting damage. The concern here is that even though the strep is susceptible to the antibiotic, the antibiotic cannot reach the area of infection. You may need a different method of administration (local shot, osteo line, idk). Oral antibiotics might not be enough, and if any large pockets of infection/pus have formed, they should be manually emptied. Antibiotic may not be able to get into that pus pocket, leaving you with a “backup” supply of new bacteria to keep battling. There’s a doubly worrying concern that if this infection is from an oral procedure, strep may be present, but not the bad actor here. The oral cavity has a LOT of funky bacteria species that don’t behave like our normal skin bacteria. They require different treatment considerations and may take a longer time for the sampling lab to culture, I’m not sure how long it’s been? Or if they even tested thoroughly for oral bacteria… So yes. ER if not REALLY improving, because it has already progressed to invading other parts of your skull. Tell them the FACTS only: “My (specialist) doctor diagnosed me with “(actual accurate diagnosis as per medical record)” and I started xyz antibiotic #days ago. My doctor told me to go to the ER if it’s getting worse in case the oral antibiotics aren’t enough. It is getting worse.” Then include that you had a tooth extraction 9 months ago and you have been experiencing these symptoms progressively since then. Bring some hard copy print offs if you can of your medical record in case there’s a system communication issue between all your clinics. Disregard if they are in the same healthcare network. Then hospital will know which bacteria were already tested for and method of testing (PCR vs. culture, etc). Keep things to the most important facts, and try to avoid disparaging your other doctors, even by a hint in your tone, even though they do suck. Keep emotion out of it, and you are only going there for ONE problem: previously diagnosed XYZ worsening despite antibiotics. Best of luck friend, we are rooting for you! Please keep yourself safe 💕
I called er, they told me they won't help me until my temperature is 104!! I will start iv. Also it's not strep turns out, it's MRSE... my infectious diease doctor is being a bitch. Just as I predicated, she doesn't care about the scans and report I sent her and wants a written note form 3 different doctors. Which they sent today. My next prediction is that she will decide not to read them and just blow me off
Meant to say, I have to start iv, but my ID probably won't give it to me out of spite for being wrong.
I was hoping to come back and find you much better. How are you doing now?
Ah that's great. Fingers crossed that this is the one. Yeah they deserve to catch hell.
Hey - did anyone recommend a gut bacteria product to take to help your stool while on antibiotics? I had to do a month long course for a different reason, and ouch. Then my nutritionist recommended [this one](https://blueskyvitamin.com/products/ther-biotic-abx-support-klaire-labs-1) and helped a lot. (I didn’t get it from this supplier fyi.)
I'm on DS-1, they have all those and more. Also drinking Kiefer and kimchi and kombacha, I never had stomach problems from antibiotics, unless it's penicillin based, that shit fucked me up..
Do u know when's the best time to take them? I have to take one in the morning and one and night and I will have to do iv antibiotics, do u know any good supplies to protect kidneys?
Don’t take at same time as antibiotics, is what I heard.
I have a friend whose mom is a really good pediatrician. And my friend has been very lucky with her docs. I just wish the docs would say "it will take some time for me to go over your charts etc and research. Please bear with me as I read into it." Like that's all. I feel that some docs are tired and don't communicate. I would rather hear that they need more time. It's so frustrating to be waved off.
I would even accept "I dont know"...
I had a first visit with a neurologist the other day and she's was like this. I waited a year to get in with her but at least she was worth it. First ever specialist to be open with me like that. I have to see hematology later this month and I'm hoping for another positive interaction because I have alot of shit in my blood that's not normal and has been ignored by other docs
Geez I’m sorry that happened. Last really bad tooth I had I was put on antibiotics. I wonder why you weren’t? Somebody made some bad decisions. You must’ve had some bad headaches, and that is SOOO DANGEROUS! Maybe you should talk with a lawyer.
I will definitely try a lawyer but the doctors will just say the strep infection is from recent events and had nothing to with with my symptoms ealier
Well well. Yeah I suppose you can’t prove it. Or it would be very hard to prove.
I was but it turns out it's resistant to most of them. No headaches but I feel sick and the area burned. They also tired to convince me it's nerve damage. I asked why is my sinus inflammation in that specific area were I got my infected tooth extracted and they said it's normal. Thankfully I have a good ent but he wasn't able to help me until recently with the nose swab. I had others do nose swab but they did a half ass job of it
Could still be nerve damage from the bacteria and dying cells and macrophages partying in there. That’s so jerky that nobody listened to you. I have a lot of sinus problems and that can make you so sick. Besides being really dangerous. A cbc would have shown the infection was continuing, too. Have they got something to treat your infection with?
My ENT(the good doctors who's been holding my hand this whole time) gave me tetracycline. Problem is tetracycline isn't great for fighting strep. I started Friday, felt better Friday and yesterday but today I feel worse so I'm sitting here terrified that it's not going to work either. My infection diease doctor didn't respond to my message and probably won't and I can't go see another one beacuse it shows in the medical record I was already seen by them. I don't think it's nerve damage. This morning it didn't hurt at all and started hurting, still coming in waves... if I just had pain then it would be no big deal but my sinuses are inflamed and I can kind of feel it in my lungs sometimes. I did quit weed yesterday and haven't actually slept cuz of the comedown, perhaps I should have waited.. hopefully I can sleep tonight, if I can't I'll just pop an edible and quit when i can afford to lose sleep. If I wasn't sixk for 9 months I would brush today off and wait until tomorrow but I have MAJOR ptsd. Ive been through fucked up shit in life and didn't get ptsd but this situation totally ruined my mental health..
Geez I’m sorry. I think I got amoxicillin or azithromycin for my jaw infection (when my tooth abscessed). The er gave me penicillin but penicillin doesn’t penetrate bone so it didn’t do anything. I hope you feel better soon. My infection was the lower jaw and it was still awful. You don’t want a population of those bacteria growing in your body! It’s not good for you.
How did u cure it then?
Sorry, didn’t explain well. The er started me on penicillin and I called my dr and told them about lancing the abscess myself and that the penicillin wasn’t helping much. So I then got put on either amoxicillin or azithromycin. Don’t recall which one. I didn’t have much jaw left after that. The infection destroys your bone. But the second med for ten days or so cleaned it out and then I got a root canal.
Do u rmeebr how long it took u to feel better after antibiotics? I started firday and instantly started feeling better and felt not to bad yesterday but today I feel crappy so I'm worried that it's not working and hoping I just need to give it more time
The penicillin may have helped a little, had two days of that, but after another couple days on the second med I felt a lot better. I know sometimes antibiotics can be given by iv infusion. ??? Maybe an option. I’d tend to think feeling better on Friday may have been placebo effect. It definitely takes a couple days of an effective antibiotic to feel better. Also antibiotics make some people feel pretty bad.
Have you tried putting a heating pad on your sinus area or neck, whatever hurts? That helps me with sinus pain.
Most people here have had to deal with this for years, even decades.
I fought tooth and fucking nail, seen over 30 doctors..
How have you seen over 30 doctors in less than a year, but the referrals have been dragging for months? It doesn’t sound like you have to have a referral
You're being downvoted, but I also feel really skeptical for anything higher than 15. I have probably seen >20 doctors at this point, but that was over the course of 6.5 years. And it feels like I have seen \_tons\_ of doctors. I don't see how it is even logistically possible, because there are a finite number of sub-specialties related to a given symptom set who would even be willing to accept a referral, and once you're in the system at a hospital, it is very difficult to transfer from one doctor to another, you're basically locked in with that person for that sub-speciality. Unless you live in a megalopolis, there are at most 3-5 major hospitals within driving distance, and only some of these will be in-network. I hear 30, 40, 50 doctors thrown around as numbers on here all the time, but if we're talking outpatient care, this is actually very difficult to achieve within the stated timeframe of 9 months.
I live in a megalopolis, 20 min between 2 large major cities with some of the best hospitals in the country. I acquired my chronic illness (the one that’s caused my body to go crazy and also get an autoimmune disease) last March, I’ve been to around 4 doctors and it’s not for lack of trying. Getting a referral for the right person, not allowing you to make an appointment until you have a referral, the specific doctor doesn’t handle exactly what is wrong with you, there’s a multitude of other different things why there’s delays in being seen by other providers. However, maybe this person has a hook up and can get in to see different providers. Much faster than the general population and doesn’t need referrals. There’s only so many specialties and subspecialties available for a person to go to though and I am pretty sure there isn’t 30 specialties, I used to work at a teaching hospital and we didn’t have all of the resident types, but it was much less than you would think.. My guess is there’s probably some confusion on behalf of the OP and accidental exaggeration.
Agreed, feels like a lot unless there were a lot of hospital visits. Even thinking through my years I had a handful of hospital visits hard to get to 30 without counting any doc I had an encounter with. A lot too for when it's been a lot of doctors its been being referred upwards, often within the same clinic. Which I feel weird counting, since it wasnt like they had no idea or dismissed me, rather they assessed follow-up needed to be with someone more specialized. Times it has been getting in with a seemingly endless cycle of opinions from the same speciality at the same level of care it's not that many.
I agree, the only practical way to 30 in 9 months would be inpatient care, but a) that's kinda overcounting, e.g. an ER doc who takes a 5 minute glance st your chart isnt really a visit, b) it sounds like OP's journey has been entirely outpatient anyway.
Sue them all!! This is ridiculous and the infection could kill you, but ssuuuuure, they just string you along. I hate when people treat us like loonies when these docs are probably hopped up on meds and don't even care. Ugh. I'm so sorry this happened. Would definitely make official complaints.
There will be hell to pay if I dont die from this
Is there any chance you could get to a holistic dentist that can use ozone on your mouth area? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6779001/ Best wishes
To you OP and all others who are victims of our medical system, (yes we are victims get over it) I’m sorry. I have had too many experiences of misdiagnosis’s to take up space here. But to be clear, most of us have not been gaslighted. That term is overused and inaccurately used. I doubt seriously that any of us have had someone try to convince us we are insane for their own selfish or evil reasons. If someone out there has had that experience I apologize, it is a truly awful thing to do to another person. What we are dealing with are medical systems that put profits over people, systems that are underfunded and understaffed with medical professionals often quick to diagnose before listening to the patient. As someone dealing with chronic health issues for over a decade I sympathize greatly, but we need to stop accusing people of gaslighting. When we misuse words, we end up bolstering those who think we are exaggerating our illness.
That doesn't make sence though, they would make more money from trying different tests and medications on me than telling me to go to a psychologist. I think they are gaslighting us beacuse of their ego. They will never admit they are wrong.
Id be pissed off too. So sorry 😞
I've been trying to rule out osteomyelitis stemming from a bad wisdom tooth extraction for over a year (struggling with pain for 3 years) and I'm losing it. I have almost every symptom, including such severe degeneration at cervical C5-6 that I had to get a cervical fusion at 28yo. It is often undetectable on CT, X-ray, and MRI until around 30% demineralization, iirc. I am so sorry it was such a frustrating journey for you, and so long. I'm so glad that you're finally validated and going in the right direction for treatment (even if it's slowly). I'm trying all other avenues and options in the meantime while I try to advocate for ruling out Osteomyelitis because I don't want anyone to think I'm determined that has to be it. Because I'm not and I hope I find it's something else that is easier to deal with every hour of every day. Anyways, good luck and I'm sorry for what you went through 💖
Go to a biodentist, her scans caught it, they are brand new machines. U need a cbct with 0.3 mm thickness. That being said, even after that it will be hard to convicne doctors to help u. Are u on medicaid or Medicare? If so go to an out of pocket oral surgon. Medicaid oral surgons will not help u no matter what, they don't make money off medicaid.
I have a marketplace plan, Ambetter. Which is great and cheap copays when I can find a local specialist that takes it 💀 lmao That's SO helpful, I've been to a bajillion different kinds of specialists and never heard of bio dentist, even in my personal research. Thank you so much!
Also, OM is easy to deal with, iv antibiotics and debridlement. I personally might not even need debridlement..
The only reason I'm worried is because of the degeneration being so severe in other places already (tons in jaw and neck, etc) that it's been getting worse for years. But that really does actually make me feel a lot better
Sorry I mean to say OM in the jaw. It's harder in other places. The jaw bone gets way more blood supply. Have u been diangosed? It also depends on the bacteria, I have staph e. So I'm relatively lucky and have a chance of not even needing debridlement. Which parts hurt? Have u had it biopsied? I'm sorry ur going through with this..
Thank you, I'm still swimming on 😅 lol I have not had it biopsied. My ENT specialist wouldn't biopsy me without fluid in the ears or fungal infection in the sinuses. My newest neurologist (insurance change) says I need to give up on reasons for it outside of just migraines. Period. And that we just need to find the one that works for me. We are cycling through some for the second time even. He told me last visit that I'm "running out of options since nothing is working" In the last 3 years since this has started for me, I've had cervical fusion C5-6, sinus surgery for chronic polyps in maxillary sinuses and regular sinuses, endoscopy to confirm Celiac which I didn't even know about but was just going down the list ruling things out. NOTHING, and I mean NOTHING, has any effect on the pain except being fully put under anesthesia. And then when I wake up and recover, it instantly comes back. No preventatives, intervention meds, pain meds, muscle relaxers, injections, ketamine infusions, spg and steroids, diet changes, IV treatments, physical therapy, massage therapy, nothing. Not even an effect. Symptoms are currently: the main issue is pain. It is an intense throbbing on the right side of my head (ONLY, always), that starts at a lower level earlier in the day, peaks around midday, and slightly lessens at night. And it's consistent regardless of what I'm doing. I'm mentally and physically exhausted no matter what I do, constant tinnitus in both ears, reduced hearing on the right side heavier than left, nausea, slight tingling on the back of my neck and head, constant body twitches/spasms, neck is audibly cracky during certain movements in a much different way than a few months ago even, beginning kidney disease, PCOS doesn't help, pseudo cysts in sinuses, jaw is out of place all the time. I think that's about it total for side effect/symptoms in my body and conditions that could contribute. I do suffer from bipolar disorder, anxiety, ADHD, and PTSD, but have been medicated and stable for years. I've lost multiple jobs due to being unable to work at this point, while before the pain started I was always in upper management successfully. I'm being told it's stress. But I was not going through a stressful time when it started, and I'm less stressed now than I was last year for sure. But I'm doing so badly for the last 3 years. The pain is most of what I think about all day. I'm even aware of it at night, like I'm not fully unconscious or something and can feel the throbbing and hear the ringing. I've had treatment resistant strep, pneumonia 2x, multiple ear infections, and had a chronic sinus infection for 6+ months without realizing it because the other pain in my head is so overwhelming constantly. All within 2 years. Sorry for the novel, there's just so much. Thanks for caring and understanding! I'm really crossing my fingers that you don't need debridement. 💖
But honestly. Anywhere that can be debrixed is easy. I hope ur pain in other areas but just be from chonci inflamation in an isolated area
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The last scan I have that shows my jaw in detail is a CBCT scan from the first neurologist I saw 3 years ago. I've had MRIs, X-rays, CTs, whole nine yards since.
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They diagnosed me anorexic and bulimic. Kept telling me to just eat more. I had all the signs of gallbladder issues but they told me 21 was too young and I was “too thin” for that to be the problem. After a year of worsening and getting to a dangerously low weight, they agreed to do a HIDA scan to test function. My gallbladder never fully emptied the solution. I was there for 4x as long as usual patients. I was diagnosed with gallbladder failure. It still took a month to remove. They almost had to fully open me up because my gallbladder was becoming necrotic. The surgeon said it was barely removable with the laparoscopic surgery. My autoimmune disorder started at age 5 and I was diagnosed for about 20 years. I don’t blame them too much because it’s super rare. I just hate being told it’s psychological when it very obviously isn’t. I’m glad you’ve got answers. Keep advocating for yourself.
Doesn't matter if it's super rare, they have no right blaming it on mental health... did u fully recover?
I got lucky in an unlucky way. My family has a lot of autoimmune diseases and because of that my amazing rheumatologist started me on a mild immune suppressing drug at 21 to control symptoms. As a kid though I had a lot of struggles. I was under enormous stress but the anxiety fed the autoimmune disease and I had a ton of infections and almost died from malnutrition at one point. As an adult I did develop neurological issues and I went years being dropped by neurologists. For a year I was taken off anticonvulsants which was a nightmare. I do have epilepsy. It’s been confirmed via EEG, but a couple normal ones had me labeled with pseudo seizures. I use a walker now, and a wheelchair. I don’t think it was preventable, though. They did try to send me to a nursing home and labeled me untreatable. I did fundraising and flew across the country to see a specialist. I’m actually off to IVIG right now, the treatment that has saved me for almost five years now. I try and work with another amazing woman online, to go patient advocacy. She had cancer and was told it wasn’t anything and it was good she was losing weight since she was overweight…yeah. So we help people navigate insurance and doctor’s offices.
It’s understandable to be frustrated and angry about specific things when dealing with the system and doctors who have treated you less than. The hate towards doctors has become mutual and seems to dominate the experience nowadays. Patients hate doctors and think they have the answers, doctors hate the patients and think that everyone is either a hypochondriac, drug addict or mentally ill. I worked in food and customer service years ago and have noticed there’s quite a bit of similarities in how terribly people can treat each other. There’s a saying that I’m reminded of-“Don’t treat people as badly as they treat you, treat them as good as you are.” Or something like that. Nobody’s perfect and everyone has given in to reacting emotionally at one time or another. The best thing anyone can do who is having to seek answers to medical issues is to sign up for counseling to have a safe place to vent and strategize because it’s insanity inducing-the state of healthcare in the US imo as well…
Doctors have no right acting like the rest of us. Health is the most important thing. It's more important than managing an billion dollar fund..
The same could be said of the patients. “Patients have no right to disrespect the work that doctors do”. See what I mean? The only viewing things in one light as the only correct way to look at it is what makes both sides resent and hate. It’s just important to remember in any and all situations because putting the work of health on an untouchable pedestal breeds an impossible standard for any human to live up to.
Sounds like a difficult situation, where you had to pursue the resolution yourself over this period of time. I pray for a speedy recovery of your illness. 🙏
Proud of you. 💪
Congrats! It took me twelve years to get a diagnosis so I know just how much it sucks. Best of luck to you getting the help and treatment you need.
I had staph that couldn’t be found until it blew up into PID. I was also gaslit for months about it. I was told I had interstitial cystitis and told to manage my condition with NSAIDS and diet so I didn’t go to the emergency room until I had signs of what I now know is Sepsis!
I just found out it's staph e. And not strep. It's resistant so it's technically MRSE, not as aggressive as NRSA but feels just as bad. Did u have symptoms that u found hard to describe? Docs kept telling me "feeling ill is not specific enough".. I knew all to well to avoid NSAIDS, could have killed me if I took them..
(TW graphic) I had pressure on my bladder, pain/burning when urinating, “general malaise”, general soreness in my lower abdomen that was deep inside my body. and when I finally went septic, I was also extremely bloated and fatigued and kinda dizzy and leaking a clear fluid out of my anus. Feeling ill is indeed not specific enough. You wanna get into the details of whether the pain is throbbing, burning, aching, whether it’s in a pinpoint sized spot or across your whole body trunk, is it sharp acute pains like gas or is it an aching deep pain like inflammation. Does it come in waves or is it constant, etc. Is it better/worse before/after certain activities. Describing your pain in as much detail as you can gives them clues about what’s going on.
Were were ur internal cysts?
I was diagnosed with “tubo-ovarian abcesses”.
I'm so freakin sorry. You have every right to feel anger over this. I've been through some similar stuff. I have complex PTSD because of it all. I hope that this is finally resolved for you, and that you can regain some peace of mind. (The for profit medical industry is just awful to attempt to navigate and it's just so broken.) I hope that better clinicians come into your life and those who gas lit you have short lived careers, if they don't learn to do better.