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Autoimmune Diseases For Hashimoto’s thyroiditis (underactive thyroid), Graves’ disease (overactive thyroid), Lupus, Crohn's disease, all types of arthritis, and all other autoimmune diseases. [Multiple sclerosis (MS) and Myasthenia Gravis (MG) have their own forums below.] |
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06-20-2007, 11:38 PM | #11 | |||
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YES! I spent a fortune going from doctor to doctor in terrible pain trying to get help.
A Houston Neurologist finally diagnosed me with Chronic Inflammatory Demyelinating Polyneuropathy and Mixed Connective Tissue Disease. I am currently being evaluated for Sjogren's, which I have already been told: I have it/I don't have it/I might have it/I don't know... Get the picture??? He related my health problems, which had previously been diagnosed as Fibromyalgia, Anxiety, Hypochondria, It's all in your mind, etc. to a 17 year history of breast implants, which were promptly removed and found to be leaking and ruptured... You know, the implants that are supposed to be safe? I can well identify with the frustration experienced when doctors do this to people. I cannot even remember how many Rheumatologists I saw before I finally got one who didn't dismiss me rudely... "Now take your anti-depressant Cathie, you just need a good night's sleep... Meanwhile, I burned so badly all over, I couldn't even stand the sheets on the bed touching me... Further, you know the pressure points they use to diagnose Fibromyalgia? I could not get one single doctor to listen when I said that I hurt ALL OVER, not just at the pressure points... Cathie |
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07-04-2007, 01:15 PM | #12 | |||
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I had a similar problem... it took me over 12 years to get diagnosed. But then it was in my head as it was two pituitary tumors wreaking havoc with my endocrine system. But during that time, I had been to psychs, GPs, gynes, immune, rhuems, neuro, derms... it seemed like every specialty to treat the individual symptoms but no one could put the entire picture together as my disease was cyclical and the endos felt hormones do not cycle (periods, anyone?). I was called a liar to my face countless times and my husband was asked about my drug and alcohol use! It ended up being Cushing's and a prolactinoma. Endocrine disease has many emotional components that are so overlooked by docs but felt by patients. And unfortunately pit tumors do not always show in MRIs and are very underdiagnosed. Now I have pathology... but it was a hard battle and my body lost.
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Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? |
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09-19-2007, 11:53 PM | #13 | ||
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Yeah ... when I was 16 and vomitting up nearly all I ate.... the psychitrist couldnt find anything so he sent me to a psycologist who gave me a test that would maybe turn up a pyromaniac or serial killer... IT came back normal but slightly depressed... AHHH my neuro psych and I were trilled ..lmao... It turned out to be FOOD ALLERGIES/ INTOLERENCES, which really is just another symtom of my Igg/ Iga issues ... I figured it out at 17 ... and folks wonder why I dont go to the dr...
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09-20-2007, 11:56 PM | #14 | |||
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You bet I've had trouble! I've been ill since 1997, but my first diagnosis, fibroyalgia, wasn't until 2000. And then even after being diagnosed with sero-negative Sjogren's in 2003, I am to this day encountering doctors who don't believe it exists and play the somatization disorder card!
I moved to South Dakota from Colorado in November and can't get a rheumatologist here to take me seriously. It appears the only way I'm going to get a specialist to treat me is to go to the Mayo Clinic and do all my testing over again. Not cool. It's not our fault that our ailments don't always fit the description in the textbook. We shouldn't be accused of being mentally unstable every time a doc doesn't immediately figure out what's wrong with our immune system. Sure wish there were enough good docs to go around. fanfaire
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Sjogren's, neuropathy, gastroparesis, diabetes, celiac, Raynaud's, hypothyroidism, fibromyalgia, chronic myofascial pain, periodic limb movement disorder |
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09-21-2007, 06:47 PM | #15 | ||
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As Nide44..aka Bob B. keeps saying? Not all docs graduated at the top of the class! Sometimes you really don't want a doc who has gotten gold stars and awards all their lives. You just want one with a remnant of curiousity and a dollop of compassion!
For me that curiousity factor is key...that the mind is not like a clogged corroded pipe in a drain! Tweak that and you have an advocate. Of course, far easier said than done! As for it beiing all in the head? Duh? The medical 'coctails' we find ourselves on to just get by, let alone function create as many problems and they help. Sad but true fact. Depressed? My neuro always asks me that...Feel any 'changes'? is the other. Well, with what I've got, who wouldn't be depressed to degrees? If not THEN that would be the time for danger? Changes? Been so long that if the pain and numbness were to 'go away' tomorrow...I would probably have a panic attack or something...Wouldn't know what to do about it - been so long since I was 'normal' over 4+ years I just don't know what/how Id take it. Hugs and good things in any way for you all and SOON! - j |
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09-22-2007, 12:05 AM | #16 | |||
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I don't mind educating a doc, as long as they actually want to learn. I went to a primary care doc once with a mouth full of sores I'd had for a month. He was mystified, but when I told him I thought it might be a manifestation of Sjogren's, he took me seriously and researched it and figured out how to treat it.
I've even been a poster child of sorts for autoimmune disease. My ENT used to introduce interns to me (with my permission, of course) so they could see first hand what happens to the mouth and sinuses in Sjogren's. Most interns only get to see this stuff in textbooks. Unfortunately, I've met far more docs who were arrogant and refused to listen to me than ones who were truly interested in getting to the bottom of what ailed me. I've been yelled at and thrown out of offices for politely pointing to documentation from credible medical sources. So many doctors have been hostile to me that whenever I see a new one I tend to be defensive myself, which is not a good way to establish a doctor/patient relationship. I don't mind answering a question about whether or not I am depressed because chronic illness can affect your mental status. What I do resent, though, is being accused by a doctor of lying when I state truthfully that I am not depressed. Or when a doctor is pointedly ignoring my physical symptoms and stating that they must have a psychological origin just because that doc hasn't seen a case like mine before. I don't expect a doctor to be perfect. But I do expect them to give me a chance. fanfaire
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Sjogren's, neuropathy, gastroparesis, diabetes, celiac, Raynaud's, hypothyroidism, fibromyalgia, chronic myofascial pain, periodic limb movement disorder |
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11-18-2007, 11:26 PM | #17 | |||
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I just gotta tell this one.
I had severe fatigue,loss of balance, dizzyness, shortness of breath, cold hands, chest pains and few more symptoms that began to get worse every day. On Sunday I couldn't even get out of bed, so husband took me to the ER. Doctor was adamant I was having a full blown panic attack and perhaps inner ear virus. She put me on IV of Valium and Meclazine...this made me feel horrible like I was going to die!...I pulled out the IV so couldn't put more Valium in me. I complained of the chest pain, EKG performed showed nothing. I begged they do basic blood work but this stubborn STUPID doctor refused to listen to me, claimed ALL I had was panic attack classic case and was discharging me from the ER, nothing more to do. I argued all the way out the door. 2 weeks later this kept up....I fainted while driving a busy hiway. Now at a different hospital system blood work ordered...ha! I was so severely anemic I was in danger of dying!...My hemaglobin was 5.1 hgb...and hematacrit 15%...thats pretty darned low! No wonder I had chest pains! I did't have enough oxygene to feed my heart! I spent the next 2 plus years recieving blood transfusions while they searched the cause of my bleeding. Finally was found an intestinal aneurism (AVM arteriveinous malformation) So was NOT a panic attack!...I was bleeding to death! Had the stupid doc at least performed the basics on me she would have seen the cause of my symptoms were from massive blood loss! But because I looked so good...I'm olive skinned, so no matter how anemic I am I'm never pale. My treating doctor did send her a nice letter to inform her perhaps she go back to med school so could tell the difference between panic attack and bleeding to death! There is a difference...I know from personal experience! I felt so angry the day she practically pushed me out of the ER claiming I was just having a panic attack....how sad! I really pray Karma does go around!
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No well behaved woman ever made history! I am forced to take one day at a time....God won't let me fast foward through the bad times . Still life is worth living no matter how bad my pain is....there will be a better day....I tell myself this often, and the sun breaks through the clouds...and I smile! . |
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12-01-2007, 04:54 PM | #18 | ||
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Quote:
I know many things on the net are to be taken with a grain of salt, but i also know that much knowledge can be gained here. I took his assumption that i couldn't sort through the chaff as an insult and rudely walked out and fired his ****...forever. And yes, i have been told "it's all in your head". Fell at work one day, hitting the middle of my back. Woke up the next day with my legs numb. The company doctor checked my reflexes, and since they were good he said "it's all in your head. Then maybe `10yrs later i was diagnosed with ppms. Last edited by Spryor; 12-01-2007 at 04:58 PM. Reason: add to. |
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12-04-2007, 09:51 PM | #19 | ||
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Hello Everyone!
I am new here, but wanted to share that yes, for years I was told I was nuttier than a jar of Skippy peanutbutter... Until they discovered my Hashimoto's Encephalopathy! Duh-oh! Good thing it only took 8 years! I swear there' a special class in medical school on how to dismiss your patients symptoms and thereby make your patient feel sicker! |
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12-17-2007, 09:23 PM | #20 | ||
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It took 9 years for me to get diagnosised with Graves Disease. I even went to a mental health therapist about half way though it all for my "panic attacks" which were actually thyroid storms. It wasn't until I was falling and turning blue that I was "told" something was wrong.
A couple of years ago I started getting extremely tired/grouchy/fuzzy-headed, I had my thyroid levels checked and they were okay. After what I went through years earlier I wasn't about to try to explain how bad I felt. I couldn't stand to see "that she's neurotic look" on a doctor's face again. Well, I have two brain aneursyms and those are symptoms. Okay, the chances of these vague symptoms ending up to be aneursyms are very low and you know the chance of me complaining leading to them being found are even lower. They were found during an MRI ordered for facial drooping. It's just sad when you get emotionally worn down trying to get diagnosised and treated to the point you just give up. So don't let them wear you down. . |
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