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Can you test negative and still have auto immune disease?
I have been tested for numerous things and all have came back normal....I am wondering can you have auto immune disease and still have an auto immune problem? My doctor feels strongly that I have an auto immune disease but we have been unable to find anything in my blood work. I have severe vertigo, leg weakness, muscle spasms, history of Uveitis, extreme fatigue, and now a weird rash on my stomach. Thanks for your help!
well i did not have health insurance so I have being seeing residents. I love my pcp...she is awesome! But I am not too happy with the others and the neurologist was a total jerk! I want to be tested for Lyme but I want the western Blot test...the tested me with the elisa testing and it was negative but i hear that the western Blot is WAY more accurate than the other. When I was 16 I had bells palsy and again at 21. I thought that it was normal to have recurring bells palsy so i did not go back to the doctor with the second round. From what I hear now it is highly unusual to have it twice unless you have an underlying health problem that would cause it. I used to play in a wooded area when i was a child and I was biten numerous times by tics. i used to find them in my head when I was in the shower and they had been there for awhile. Bells palsy is a symptom of Lyme disease. Who knows I just want some sort of answer. I am only 34 and I feel 94..lol
Are you talking about doctors at Chandler? I was seeing the school health center doctors, not so good!. I think the doctors at affiliated with the hospital are probably pretty good.
The more you write, the more it sounds like you might have thyroid issues, which cause dry skin, etc. But keep in kind that you might have more than 1 thing going on. I have many different symptoms-some are attributed to my blood disorder, some to my thyroid and others to infection problems that I tend to have. Have they done a infectious disease work-up on you? At one time my hematologist and an infectious disease doc tested me for every test you can imagine because I had a white blood cell count of 40,000 that would not go down. One of the ones they kept coming back to was Lyme disease although it continually came back negative.
Back to the doctor thing-if you are not happy with your doctors or if you think they are not taking your problems seriously then you should make a change! You have to take charge of your own healthcare which I know can be difficult when you don't feel well. I recently switched my PC doctor because I just felt like I wasn't getting what I needed and I am so glad that I did. It was hard to make the switch because I had been with my doctor for quite a while. I wrote him a letter telling him that I needed a doctor who could follow me when I was in the hospital (mine didn"t make hospital visits) and thanked him for all he had done for me and believe it or not I got a call the day he received it saying he understood and would take me back if anything changed. It is hard to do when you have no evergy, but in the long run I am much happier. Maybe your endo will be the one to crack this!
Keep me posted and let me know if you have any questions. Good luck!!
The more you write, the more it sounds like you might have thyroid issues, which cause dry skin, etc. But keep in kind that you might have more than 1 thing going on. I have many different symptoms-some are attributed to my blood disorder, some to my thyroid and others to infection problems that I tend to have. Have they done a infectious disease work-up on you? At one time my hematologist and an infectious disease doc tested me for every test you can imagine because I had a white blood cell count of 40,000 that would not go down. One of the ones they kept coming back to was Lyme disease although it continually came back negative.
Back to the doctor thing-if you are not happy with your doctors or if you think they are not taking your problems seriously then you should make a change! You have to take charge of your own healthcare which I know can be difficult when you don't feel well. I recently switched my PC doctor because I just felt like I wasn't getting what I needed and I am so glad that I did. It was hard to make the switch because I had been with my doctor for quite a while. I wrote him a letter telling him that I needed a doctor who could follow me when I was in the hospital (mine didn"t make hospital visits) and thanked him for all he had done for me and believe it or not I got a call the day he received it saying he understood and would take me back if anything changed. It is hard to do when you have no evergy, but in the long run I am much happier. Maybe your endo will be the one to crack this!
Keep me posted and let me know if you have any questions. Good luck!!
I cannot wait to see the endocrinologist. i think that doctor will be the one to help me. My rash is raised and it comes and goes withing hours. It is very strange. My nails are also very rigid and my toe nails fall off at times. My hair was falling out but i think that has slowed down some. My skin is so dry I use 3 different types of creams and body butters and I still crack and bleed from it. Mainly on my stomach. It is very gross and scary to see sometimes. My libido went totally down the drain but i swear the worst part is the vertigo and the jello-y like legs. It seems I never have energy. I sit around a lot. I am seeing UK doctors because when i first got sick I had no insurance. Now I have health insurance and i am wondering if i should get away from UK? Maybe you can help me with that decision. Do you think that UK doctors are as trained as the others? Yes i cannot wait this game tomorrow! I hope we knock em out!!
Is your rash a raised rash? Can you tell if it is irritation or is it like little pinpricks? The petechiae that I get is like little pinpoint sized red dots that do not blanch if I press on them. They are little hemorrhages of small capillaries in the skin and they do sometimes burn a little. They are like little tiny bruises and that is the way they fade-very gradually, like bruises. My blood condition is actually caused by an allergy to mercury. I went into remission for 10 years after I had all of my fillings removed. I had a relapse this past year due to a MRSA Staph infection-didn't realize that was a trigger. When I 1st had a problem I was at UK and the doctors told me to change soaps! I was fortunate that my PCP at home took it seriously.
With autoimmune conditions, it can be really difficult to to pinpoint, but you just have to keep looking. Once you do have a diagnosis, everything else starts to make sense. All of your symptoms might not be due to any 1 disorder, mine are not. But if you can get that 1 diagnosis, then your doctors can start piecing it together. I still baffle my doctors just about everyday but at least they know to start with autoimmune issues when I have a new symptom (and remember I have no classic autoimmune markers).
My endocrinologist has really helped me. If your hormone levels are out of whack that could be at the root of your problems, but you have to know why they are out of whack. And like I said in an earlier post my thyroid levels appear normal at 1st glance, but my endo looks past that and digs deeper. With your symptoms of gaining and losing weight, you could have something like hashimoto's thyroiditis. I had this when I was younger and I had the same problem, sometimes I would gain and sometimes I would lose. It is because your thyroid is swinging back and forth between hypo and hyper. I felt horrible with this.
I hope you figure something out soon. Let me know if you have other questions. It can be a real struggle but you just have to keep believing that they will figure it out!
And..we'll keep our fingers crossed for Saturdays game and hope for 18-0! :-)
With autoimmune conditions, it can be really difficult to to pinpoint, but you just have to keep looking. Once you do have a diagnosis, everything else starts to make sense. All of your symptoms might not be due to any 1 disorder, mine are not. But if you can get that 1 diagnosis, then your doctors can start piecing it together. I still baffle my doctors just about everyday but at least they know to start with autoimmune issues when I have a new symptom (and remember I have no classic autoimmune markers).
My endocrinologist has really helped me. If your hormone levels are out of whack that could be at the root of your problems, but you have to know why they are out of whack. And like I said in an earlier post my thyroid levels appear normal at 1st glance, but my endo looks past that and digs deeper. With your symptoms of gaining and losing weight, you could have something like hashimoto's thyroiditis. I had this when I was younger and I had the same problem, sometimes I would gain and sometimes I would lose. It is because your thyroid is swinging back and forth between hypo and hyper. I felt horrible with this.
I hope you figure something out soon. Let me know if you have other questions. It can be a real struggle but you just have to keep believing that they will figure it out!
And..we'll keep our fingers crossed for Saturdays game and hope for 18-0! :-)
I have seen a PCP , a retina specialist(for the scleritis), and a rheumatologist. I have an appt for the ent docs on the 26th and endocrinology in March. My thyroid is weird. Some numbers are high some low ...but I am gaining weight and losing weight. I cannot balance it. They keep saying that my thyroid is not bad enough to treat but my testoterone levels and some of my female hormones are out of whack! Thank you for your help and I will keep you posted. This rash is small red areas. It seems to come out of the blue and fade the same way...it is really strange. It doesnt itch...sometimes it burns. Again, Thank you for your help!! GO CATS......UNDEFEATED!! LOL
deebrown30,
Yes, I am from KY-go CATS :-). About 25 years ago, I developed bleeding under the skin and severe stomach pains. I was lucky, my PCP sent me to a hematologist who diagnosed it immediately as an autoimmune blood disorder. I went through many years of hospitalizations and treatments and finally went into remission. I have recently relapsed and am in treatment again. In the past they did plasmaphersis, but now I am on Cytoxan (can be pretty nasty) and have just gone off of oral prednisone.
About 10 years ago, I started having symptoms of hypothyroidism. I had a different PCP who did tests and said they were normal and kind of blew me off so I made an appointment with an endocrinolgist and she has been great. She said that she doesn't just look at the numbers and put me on Synthroid. I also have had a pretty severe Vit D difficiency that she has been working on. And then I have the vitiligo which is very obvious and is know to be autoimmune.
However, whenever I have ANA tests etc, thay are always normal. I have been to Johns Hopkins and Cleveland Clinic and both have verified my blood disorder diagnosis.
What type of rash do you have on your stomach. Mine looked like a rash but it was actually petechiae-bleeding under the skin. I get it on my stomach and arms and legs.
What type of doctor are you seeing. I see a hematologist, but many with autoimmune issues see a rheumatologist. I would keep pressing and perhaps try different doctors. I, like you, have many symptoms but if they only looked at autoimmune markers I would be left untreated.
~ky
Yes, I am from KY-go CATS :-). About 25 years ago, I developed bleeding under the skin and severe stomach pains. I was lucky, my PCP sent me to a hematologist who diagnosed it immediately as an autoimmune blood disorder. I went through many years of hospitalizations and treatments and finally went into remission. I have recently relapsed and am in treatment again. In the past they did plasmaphersis, but now I am on Cytoxan (can be pretty nasty) and have just gone off of oral prednisone.
About 10 years ago, I started having symptoms of hypothyroidism. I had a different PCP who did tests and said they were normal and kind of blew me off so I made an appointment with an endocrinolgist and she has been great. She said that she doesn't just look at the numbers and put me on Synthroid. I also have had a pretty severe Vit D difficiency that she has been working on. And then I have the vitiligo which is very obvious and is know to be autoimmune.
However, whenever I have ANA tests etc, thay are always normal. I have been to Johns Hopkins and Cleveland Clinic and both have verified my blood disorder diagnosis.
What type of rash do you have on your stomach. Mine looked like a rash but it was actually petechiae-bleeding under the skin. I get it on my stomach and arms and legs.
What type of doctor are you seeing. I see a hematologist, but many with autoimmune issues see a rheumatologist. I would keep pressing and perhaps try different doctors. I, like you, have many symptoms but if they only looked at autoimmune markers I would be left untreated.
~ky
2 Comments
My antibody tests are all negative but I have so many autoimmune disease symptoms---many organ systems in my body are degenerating all at once: Gastrointestinal, Nerves) especially small fiber peripheral sensory neurons), and symptoms of Rapid Brain Deterioration(more localized in a few spots than it is in other brain parts). I need treatment now or I will die! I think it is a generalized autoimmune disease, but nobody will treat it without positive lab antibody tests. Please, can you help me? What tests do I get now? It is very much like Systemic Lupus Erythematosus. I know I DO have mild Psoriasis and Raynaud's Disease. Where do I go for help?
sounds like Bechets disease , I was ana negative and have been diagnosed with Bechets with a lot of the same symptoms
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