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Old 07-28-2011, 10:04 PM   #1
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Undiagnosed auto-immune

I've been to about a million different specialists, all trying to find out what's wrong with me. I've been sick for years now. Not just with constantly falling ill with some sort of cold or infection at least every couple of months (yes, even in the summer) But, the symptoms have been piling up for me as well. I've had tons of blood work done for different auto immune diseases but, nothing came up. I've had my SED rate checked which hasn't shown anything. The only thing that showed was when I was at my dermatologists office seeking help for the massive amount of hair I've lost in such a short amount of time. She took a full blood panel and found that my thyroid was off, I had a high level of DHEA levels (which seems to be the one consistent factor in all my blood work) and my ANA titer came back positive over 1:40 which isn't very high at all but, it was still showing that something is off. Before that I had been to a gastro (about a year prior) for all the stomach problems I was having. Those blood tests showed a positive for crohn's disease but, my endoscopy showed nothing nor did my colonoscopy. I've also been to a rheumatologist who found nothing, and to a neurologist who also, found nothing. I went to an endocrinologist who said my levels were all out of whack but, sort of dismissed me right away and said I had PCOS (polycystic ovaries) which, ok I get because I had a laparoscopy and D&C donein november for cysts and adhesions but, it still didn't equate all the other symptoms I've been experiencing. It's bringing me down so much that I can't just feel healthy like everyone else. I honestly don't know how I even get out of bed anymore. This sickness has literally been such a burden on my life in so many aspects that it's driving me insane. Why can't the doctors figure out what the hell is going on? Anyway, I was hoping someone ANYONE out there could let me know if these symptoms sound like anything or if they have ever dealt with a similar situation. Let me know please, any help is greatly appreciated. Here are the list of my symptoms (and no I'm not a hypochondriac, I really do feel this way every day. On good days only half of those symptoms)
Extreme fatigue
body aches
dizzyness and vertigo daily
weakness in body in arms and legs
faint feeling when standing up
numb fingers and toes that come and go without cause
vertigo/dizziness regular basis
headaches on regular basis
chronic infection in the throat and lungs
digestive problems including pains, aches, vomiting, diarrhea etc
weight loss, severe at one point
worsening hair loss over past four years
constant thirst
loss of appetite- consistent at times
feel feverish often
pain in back (kidney area) comes on suddenly and very severe, only lasts about a minute or two
aching hands (lock up)
aching knees and hips
running to the bathroom frequently
digestive system and bladder shut down post operative laparoscopy for two weeks
Muscle burning sensation from light activity
blue-ish color in hands and feet majority of the time
Hands and feet are always cold
Uneasy feeling in stomach when in direct sunlight for more than ten minutes (since I was younger)
Easily bruised on legs.Heart palpitations/heavy heartbeat.
hand tremors
joint pain

I've already been tested like I said for different auto immune diseases like Lupus and only had a positive ANA of 1:40 which, could be a false positive but, from what I read Lupus has alot of the symptoms that I have and is also very difficult to diagnose. I had a ct scan of the abdomen and pelvis recently as well, since the pelvic pain I was experiencing due to the cysts and adhesions, is now back and worse than ever. Anyway, sorry for the rant.

 
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Old 07-31-2011, 06:48 AM   #2
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Re: Undiagnosed auto-immune

An ANA of 1:40 should be negative, maybe some labs vary, for my labs, that would not be considered a positive result. You can have it rechecked a couple of times, best to do when you feel like your having a flare, if it continues to stay that low, then it's likely nothing to worry about.

However, you have stated many problems that could be consistent with an autoimmune disorder. Your also stating problems that sound consistent with diabetes? Have you had your sugar level tested?

ANAs are negative in 5% of people with lupus. In these patients, frequently, there are other antibody markers of lupus present, such as cardiolipin antibody, anti-smith antibody, DNA antibodies, SS-A and SS-B antibodies. You really should have these checked even if the absense of a high ANA.

ESR, may not be high in the case of Lupus. Many people with Lupus have normal inflammatory markers. You can have your C3 and C4 compliment levels looked at instead, that may show something if it is lupus.

But.. there are many other types of autoimmune disorders that could cause your problems. Is your thyroid issues Hashimito's? The thyroid disease itself can bring on alot of symptoms, especially fatigue, weight changes, hair loss, skin changes, menstrual irregularities, fertility problems, joint and muscle pains, bowel problems, depression, anxiety. One disease can mimic another. You may feel like this is a connective tissue disorder when it may just be your thyroid issues.

I'm sorry that your having so many problems and that you don't feel like your getting the appropriate answers from your doctors. Being that sick, and not feeling like your getting a straightforward answer, I've been going through that for along time. I know it's frustrating. If they were helping you feel better, it might not be so aggrivating. What is your current treatment right now, with medications?

Maybe you should discuss with your physician a treatment plan to prevent you from developing chronic infections, that can really take a havoc on your immune system and it can keep you sick even without the presence of an autoimmune disorder, maybe they should start checking your blood cell counts when you do get sick, maybe it's a weekened immune problem??

 
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Old 07-31-2011, 06:49 AM   #3
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Re: Undiagnosed auto-immune

An ANA of 1:40 should be negative, maybe some labs vary, for my labs, that would not be considered a positive result. You can have it rechecked a couple of times, best to do when you feel like your having a flare, if it continues to stay that low, then it's likely nothing to worry about.

However, you have stated many problems that could be consistent with an autoimmune disorder. Your also stating problems that sound consistent with diabetes? Have you had your sugar level tested?

ANAs are negative in 5% of people with lupus. In these patients, frequently, there are other antibody markers of lupus present, such as cardiolipin antibody, anti-smith antibody, DNA antibodies, SS-A and SS-B antibodies. You really should have these checked even if the absense of a high ANA.

ESR, may not be high in the case of Lupus. Many people with Lupus have normal inflammatory markers. You can have your C3 and C4 compliment levels looked at instead, that may show something if it is lupus.

But.. there are many other types of autoimmune disorders that could cause your problems. Is your thyroid issues Hashimito's? The thyroid disease itself can bring on alot of symptoms, especially fatigue, weight changes, hair loss, skin changes, menstrual irregularities, fertility problems, joint and muscle pains, bowel problems, depression, anxiety. One disease can mimic another. You may feel like this is a connective tissue disorder when it may just be your thyroid issues.

I'm sorry that your having so many problems and that you don't feel like your getting the appropriate answers from your doctors. Being that sick, and not feeling like your getting a straightforward answer, I've been going through that for along time. I know it's frustrating. If they were helping you feel better, it might not be so aggrivating. What is your current treatment right now, with medications?

Maybe you should discuss with your physician a treatment plan to prevent you from developing chronic infections, that can really take a havoc on your immune system and it can keep you sick even without the presence of an autoimmune disorder, maybe they should start checking your blood cell counts when you do get sick, maybe it's a weakened immune problem??

 
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Old 07-31-2011, 08:17 AM   #4
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Re: Undiagnosed auto-immune

An ANA of 1:40 should be negative, maybe some labs vary, for my labs, that would not be considered a positive result. You can have it rechecked a couple of times, best to do when you feel like your having a flare, if it continues to stay that low, then it's likely nothing to worry about.

However, you have stated many problems that could be consistent with an autoimmune disorder. Your also stating problems that sound consistent with diabetes? Have you had your sugar level tested?

ANAs are negative in 5% of people with lupus. In these patients, frequently, there are other antibody markers of lupus present, such as cardiolipin antibody, anti-smith antibody, DNA antibodies, SS-A and SS-B antibodies. You really should have these checked even if the absense of a high ANA.

ESR, may not be high in the case of Lupus. Many people with Lupus have normal inflammatory markers. You can have your C3 and C4 compliment levels looked at instead, that may show something if it is lupus.

But.. there are many other types of autoimmune disorders that could cause your problems. Is your thyroid issues Hashimito's? The thyroid disease itself can bring on alot of symptoms, especially fatigue, weight changes, hair loss, skin changes, menstrual irregularities, fertility problems, joint and muscle pains, bowel problems, depression, anxiety. One disease can mimic another. You may feel like this is a connective tissue disorder when it may just be your thyroid issues.

I'm sorry that your having so many problems and that you don't feel like your getting the appropriate answers from your doctors. Being that sick, and not feeling like your getting a straightforward answer, I've been going through that for along time. I know it's frustrating. If they were helping you feel better, it might not be so aggrivating. What is your current treatment right now, with medications?

Maybe you should discuss with your physician a treatment plan to prevent you from developing chronic infections, that can really take a havoc on your immune system and it can keep you sick even without the presence of an autoimmune disorder, maybe they should start checking your blood cell counts when you do get sick, maybe it's a weakened immune problem??

 
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Old 08-04-2011, 09:43 AM   #5
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Re: Undiagnosed auto-immune

Thanks for your reply! They have checked for diabetes and my thyroid, I was on metformin which is a diabetes medication but is also used for poly cystic ovaries but, the metformin makes me feel weird and I found out from my immunologist that I went to on monday, that she feels I was mis-diagnosed with pcos. That would explain the bad reaction with the metformin. I just had a ton of blood work done yesterday (14 viles of blood to be exact) and just did a urinalysis and stool testing so, I'm hoping something comes up with that. If not, my immunologist recommended a hematologist to go to. The reason I think it might be lupus is because I have so many symptoms of it including the rash and light sensitivity. I'm also aware that lupus many of the times takes years to diagnose because it will go from showing on a blood test once to not at all the second time. It depends on when they get lucky catching it. Idk hopefully I get answers soon.

 
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Old 08-07-2011, 06:06 PM   #6
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Re: Undiagnosed auto-immune

[QUOTE=LeaBeans;4810668]I've been to about a million different specialists, all trying to find out what's wrong with me. I've been sick for years now. Not just with constantly falling ill with some sort of cold or infection at least every couple of months (yes, even in the summer) But, the symptoms have been piling up for me as well. I've had tons of blood work done for different auto immune diseases but, nothing came up. I've had my SED rate checked which hasn't shown anything. The only thing that showed was when I was at my dermatologists office seeking help for the massive amount of hair I've lost in such a short amount of time. She took a full blood panel and found that my thyroid was off, I had a high level of DHEA levels (which seems to be the one consistent factor in all my blood work) and my ANA titer came back positive over 1:40 which isn't very high at all but, it was still showing that something is off. Before that I had been to a gastro (about a year prior) for all the stomach problems I was having. Those blood tests showed a positive for crohn's disease but, my endoscopy showed nothing nor did my colonoscopy. I've also been to a rheumatologist who found nothing, and to a neurologist who also, found nothing. I went to an endocrinologist who said my levels were all out of whack but, sort of dismissed me right away and said I had PCOS (polycystic ovaries) which, ok I get because I had a laparoscopy and D&C donein november for cysts and adhesions but, it still didn't equate all the other symptoms I've been experiencing. It's bringing me down so much that I can't just feel healthy like everyone else. I honestly don't know how I even get out of bed anymore. This sickness has literally been such a burden on my life in so many aspects that it's driving me insane. Why can't the doctors figure out what the hell is going on? Anyway, I was hoping someone ANYONE out there could let me know if these symptoms sound like anything or if they have ever dealt with a similar situation. Let me know please, any help is greatly appreciated. Here are the list of my symptoms (and no I'm not a hypochondriac, I really do feel this way every day. On good days only half of those symptoms)
Extreme fatigue
body aches
dizzyness and vertigo daily
weakness in body in arms and legs
faint feeling when standing up
numb fingers and toes that come and go without cause
vertigo/dizziness regular basis
headaches on regular basis
chronic infection in the throat and lungs
digestive problems including pains, aches, vomiting, diarrhea etc
weight loss, severe at one point
worsening hair loss over past four years
constant thirst
loss of appetite- consistent at times
feel feverish often
pain in back (kidney area) comes on suddenly and very severe, only lasts about a minute or two
aching hands (lock up)
aching knees and hips
running to the bathroom frequently
digestive system and bladder shut down post operative laparoscopy for two weeks
Muscle burning sensation from light activity
blue-ish color in hands and feet majority of the time
Hands and feet are always cold
Uneasy feeling in stomach when in direct sunlight for more than ten minutes (since I was younger)
Easily bruised on legs.Heart palpitations/heavy heartbeat.
hand tremors
joint pain

I've already been tested like I said for different auto immune diseases like Lupus and only had a positive ANA of 1:40 which, could be a false positive but, from what I read Lupus has alot of the symptoms that I have and is also very difficult to diagnose. I had a ct scan of the abdomen and pelvis recently as well, since the pelvic pain I was experiencing due to the cysts and adhesions, is now back and worse than ever. Anyway, sorry for the rant.[/QUO

Your'e not alone! If you read any of my posts we have some things in common. I'm not sure what to tell you other than to be here for some support. At least you have the ANA on board, all I have is a high IgE level. More recently my joints have been failing me. I'm 26 and I have to use a cane.

 
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Old 08-07-2011, 09:38 PM   #7
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Re: Undiagnosed auto-immune

Thanks for the reply, yea the ANA was on board but, every doctor said that the 1:40 homogenous isn't even that high and is considered "normal" but, it was my dermatologist that said she really believes I have an auto-immune disorder. My rheumatologist literally made it seem as though he was going to really help me. He only order a few blood tests for some really obscure diseases and, once the blood tests came back fine he basically dismissed me. He said he "couldn't help from this point on". Great doctors we have here. My endocrinologist is literally the worst though. He definitely misdiagnosed me with PCOS when, two doctors so far have agreed that it was a bad diagnoses for sure. He never listens to me and talks over me the second HE asks ME a question. What's the point of asking a question when you don't care to even listen to the answer? So I'm not stuck on metformin which isn't even helping me except for making me slightly less tired than I was but, if I don't take it for a day I feel so ill it isn't even funny. My Neurologist is a loser too, I went for blood tests and he called back acting so cavalier when the blood work wasn't even done properly by the hospital and had to be done again. He sounded like I shouldn't even bother getting it done again as if he really doesn't think it will prove I have anything anyway. My last saving grace is this immunologist. If she doesn't help me I have no idea what I'm going to do. But, she's proof from what she said that blood tests aren't as conclusive as most doctors make us think. They base such emphasis on them meanwhile they are all fallible. You should also make sure your doctors are actually testing you for the right things and doing the right blood tests because, I found out from my immunologist that I had been told I had gotten tested for many things i thought I had but, according to the blood work she reviewed from my history workup, I hadn't gotten tested for many diseases I could potentially have. It's difficult to find someone who actually cares and who will actually be persisten on finding out what's cause you so many problems.

 
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Old 08-17-2011, 01:58 PM   #8
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Re: Undiagnosed auto-immune

I feel your pain. After firing all my doc's I don't know who to turn to next. I'm 26 and have to use a cane to get around sometimes. There are days when I go to get out of bed and my knees give out causing me to fall flat on my face. Almost every doc I have seen talks over me when they ask me a question. They send me for blood work that isn't even necessary. There was a point when I was 18 I was put in ICU with hives covering me head to toe and my BP was 60/40, rendering me unconscious. The ICU nurses were asking me why I was there....umm I was admitted through the ER. They had NO RECORD of that or the medications administered to me while I was in the ER. They cover up their mistakes. I have a close friend who is in nursing school and she says records are altered all the time and that doctors will walk out of rooms saying they have no clue or talk crap about the patients. This has led me to have no faith in the medical community.

 
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Old 08-17-2011, 08:10 PM   #9
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Re: Undiagnosed auto-immune

Yea, it's ridiculous. My immunologist got the blood work back finally. White blood cells in my urine, the Eppstein-Barr Virus came back really high even though I got it when I was 16 so, don't ask me how that's even possible to show up again really high as if I were just infected. My doctor does think that "there's something definitely wrong" but because the blood work didn't show anything definitive yet again she wants me to wait a few months and come in again for another full work up. She also said that, all blood work that doctors give are very general and that, unless I were to go to a real diagnostic center like John Hopkins that gives more specified tests, there's a large chance I won't ever find out what is wrong with me. Which of course made me less hopeful but, at least she was honest. She told me so many people come to her as a last resort with so many symptoms that have no diagnosis. She says that so much research is poured into finding out why so many things won't come up in blood tests but, that sometimes they just reach a dead-end. So, my last visit pretty much stopped with "Well, there are many things you could still have" Once again I had no help at all, and no peace of mind. I also changed gynecologists since I was having no luck with figuring out why I had chronic pelvic pain even after my surgery for cysts and adhesions back in november. They did a sonogram for me last Monday. The sonogram tech said it seemed like I had another cyst on the opposite side of where the pain was coming from. She claims the cyst is pushing everything to the left side. I was supposed to have a doctor call me to explain the results to me in detail but, after calling them literally a billion times I found out they "lost my chart" and needed to look for it. (really professional..not) So, now I'm waiting to actually hear from my doctor so that I can also see if the urine analysis came back with white blood cells in the urine as well. If I had a UTI it would have gone to my ******* kidneys by now thanks to having to wait on them to just get back to me on that alone. I feel like so many doctors just could care less about their patients.

 
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Old 08-18-2011, 06:50 PM   #10
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Re: Undiagnosed auto-immune

Honey, the doc's could give two s**ts about us. I am repeatedly told to go to MUSC, here in my state but I heard from a client of mine today that his wife has the same problem I have. She took en experimental route that I had turned down. She now has a brain tumor, a potential side effect. I honestly feel that the mass majority of doctors do not care about the client, only how much money they can make. And if you're at all non compliant then they give you the boot.

 
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Old 08-19-2011, 08:56 AM   #11
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Re: Undiagnosed auto-immune

so, it's either we suffer in the current conditions we are in, or throw caution to the wind and go to diagnostic places where we would probably need to travel to just to go and see, only to possibly get sicker?

 
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Old 11-12-2011, 06:03 AM   #12
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Re: Undiagnosed auto-immune

LeaBeans:
I know this is an old post but I was wondering if you ever got resolve. I am from Long Island also and have similar symptoms to you. I have been to a million drs also. With no answers. I also have tingling on the top of my head and a balance problem and eye twitching in addition to lots of things that you listed. Mine all started with some kind of a bug (cold and upper resp.) and then went into a fatigue and no energy. I could hardly lift my legs and arms then stomach issues ect ect. Then a few years later started with the neurological symptoms. It has been 6 yrs and still no answers. What is going on with you? Lala

 
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Old 11-17-2011, 02:01 PM   #13
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Re: Undiagnosed auto-immune

I am in the exact same boat as you!!! Almost identical symptoms... ANA was also 1:40 nucleolar in January but most recently was normal. They have tested me for lupus, RA, lymes disease, MS, etc. All labs are normal and also had a negative MRI. I am so frustrated over it all. I break out in hives daily and have all the neuro symptoms you mentioned. I could deal with the physical symptoms but it's the EXTREME fatigue and overall feeling of being run down that is making me miserable. I'm 31 with two young kids and never have the energy or desire to do things. I have seen my family doctor, gyn, neurologist, internist, and as of yesterday an ENT. Waiting on allergy tests to come back but I'm sure it will all come back normal and I'll be left with yet another doctor saying they have no clue. Please let me know if you find anything out

 
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Old 11-17-2011, 03:55 PM   #14
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Re: Undiagnosed auto-immune

Bella:
I am sorry to hear another person with the same problems and no resolve. I just want to know what exactly are your neuro symptoms? Mine are in the last post from me but i will repeat them. I have tingling on the top of my head, eye twitching sometimes that rotate from one eye to the another, but i don't always have twitching. I might have it for a few months and then it will stop and then it will start again in a different location on one of the eyes. My neck really hurts and i have a problem with feeling off balance. I don't actually fall but i don't feel confident in my walking. I sometimes will get a wave of lightheadedness come over me for a 1/2 a second. And what is really weird when i am having these symptoms my nose feels wet inside. Not like a cold, most often i don't really need a tissue but it just feels wet. Don't know how else to explain it. And also these symptoms are not all day. They come and go. How do your symptoms compare? And how did your condition start? Is there any possibility that you could have gotten bitten by a tick? Just because your lyme test was negative does not mean you don't have lyme. Lyme is very hard to detect. It does not always show up on blood work. Are you familiar with the lab in California called Igenix. They are the best lab for lyme. But still that does not mean a definite positive. Hope to hear from you soon. LaLa

 
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Old 11-20-2011, 10:32 PM   #15
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Re: Undiagnosed auto-immune

Lala. I get the same feeling when I walk too. I noticed I feel wobbly like I am going to walk into things and usually I do. I can't tell you how many times I knock into things throughout the day. The dizziness is ridiculous and I always have a foggy feeling as if I'm on drugs. I finally got a diagnosis of Lupus from 2 doctors a few weeks ago so they decided to send me to a rheumatologist to sort of sign off on me starting to take plaquenil and the rheumatologist was about 80 years old and could care less about my symptoms. Not only was she patronizing and condescending but, she gave me these looks when I spoke about how I was feeling as if I were crazy or making it all up. She sent me for "blood tests" aka, a simple cbc which just tests your platelets and red and white blood cells etc. She claimed she, "didn't wanna retest the expensive blood tests" so, I got my answer with her.

She was more concerned about the expenses involved than how I was feeling. I broke down in her office and told her how I really couldn't go on living like this feeling like crap every day. She just seemed to dismiss everything I said. When I told her both my immunologist and dermatologist claimed I had Lupus she said, "well your kidneys aren't failing nor is your liver or any other vital organ." I'm guessing we need to be on our death beds before getting diagnosed with something and getting help. My advice for you all is to see only young doctors. I know that sounds biased but, every single doctor that has actually helped me was young either in their 30's or early 40's. If you see someone that is older, they usually tend to go by this archaic way of viewing health and emphasize everything based off of things they have learned in the 1970's.

I would recommend since you do live on long island to see a dr. name dr. Rachel bautista. She is an immunologist and really has stuck with me for a while through all of this. she is now testing me for cystic fibrosis. did you know CF can cause stomach problems, chronic sinus problems and bronchitis? I had no Idea. I also found out that you don't necessarily need to show symptoms as a child. Some people don't know til they are older. But, either way you should start seeing someone who is younger. And if any of you have any issues with your hair falling out I suggest contacting a Dr. Valerie Goldburt. She sat with me after hours one night after already seeing me earlier that day just to hear me out on my symptoms. We need doctors who will listen and won't shoo us out the door. I hope you all find help. For me, I'm firing this old hag of a rheumatologist and won't stop til I get the help I need and deserve.

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