Discussions By Condition: I cannot get a diagnosis.

Please help me!

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: sickntiredofdrs
  • February 11, 2008
  • 11:13 PM

I have been going in and out of Dr's offices off and on for 6 years. I have my whole lower back is blown, spondylothesis, ddd and most recently have been diagnosed with Lupus. I get bad rashes when I get in the sun then I get sick. My joints ache all the time and insomnia is really bad. They wanted to do surgery on my back but I said no b/c I have seen too many people worse off after surgery. I got a compression fracture on my T8 last April, I run a low grade fever all the time and last year I was told I had a partial tear in my rotator cuff and went to physical therapy. It has not bothered me to bad until last Sat morning when I woke in so much pain is all I could do was cry, I could and can still not lift my left arm, have very little strength in it and it feels like a stabbing, burning feeling on the side, top and a little behind my shoulder. As far as my Lupus my tests all came back negative but b/c of the symptoms my PCP said I had Lupus and Fibro. I had a bone density test and have osteopenia. Now this same Dr sent me for MRI's on my left shoulder and it came back negative so he has not only told me I need a shrink, he now has taken my Lupus and Fibro diagnosis away. I need help please, am I crazy? How can my shoulder be in so much pain and I cannot even lift my arm but yet nothing is wrong? Are MRI's 100%? I have been sick for 6 years now and in Aug I had my uterus and cervix removed b/c of fibroids and a cyst. I feel so alone in all of this and lost, I think even my hubby looks at me like yeah right now when I say I am sick. I cannot function b/c my memory is so bad and I hurt all over, sores in my mouth, rash from the sun or tanning bed, painful swollen joints, muscle's ache and I still try to remain active. I am only 36 could this all be in my head? How could a Dr be so cruel to be treating me for diseases and giving me meds and since my shoulder MRI came back negative he says I need a shrink????? Please help.

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  • Which specialists have you seen? Have you seen an endocrinologist? How about a rheumatologist?What lab work have you had done so far, and which, if any results have been abnormal?And imaging? What imaging has been done and what were the results?It sounds to me like there is something going on, it's just that no one has figured it out yet. It sounds like your symptoms started around age 30. Well, the typical patient with an autoimmune disease is a 30 year old female, and these patients are often referred to shrinks when the initial lab work comes back normal. It could be something else, too... Perhaps endocrine.There's an neumonic (spelling?) in medicine to help remember the major causes of illness:VascularInflammatoryNeoplasmDegenerativeIntoxicationCongenitalAutoimmuneTraumaEndocrineNotice how it spells "vindicate"- to vindicate the patient from accusations that their symptoms are all in their head.I don't know you, but I know from my own experience that it is important to trust one's own symptoms. I went undiagnosed with a rare disease for 8 years and was told by many doctors that my symptoms were not real or that I wasn't sick, etc because my labs were all normal. I was sent to shrinks and therapists along the way. As it turns out, my doctors were not ordering the right labs that would end up diagnosing me. Ironically, my illness is vascular, inflammatory, autoimmune and endocrine and it was missed on all levels for 8 years.It's kind of a craps shoot when you go to the doctor. You never know in advance how arrogant, knowledgeable, experienced, creative, or sensitive they will be until you go- and then it's too late to get your money back. Sometimes you have to fish through a lot of bad ones to find the one who will be able to figure it all out and help you piece your life back together.I don't know what you have (it could be a parathyroid or thyroid disorder, a metabolic condition, or a large number of other things- perhaps something really rare, too)... but I think that you will get diagnosed at some point if you keep trying, even though you are sick and tired of doctors. I certainly would not go back to the one who sent me to a shrink. If you can change to another primary- perhaps an internist, then they might help steer you in the right direction. Please do not go to anyone who dismisses your symptoms. I do not think that all the pain, rashes, insomnia- just suffering in general- warrants referral to a shrink. You need someone smart who will get to the bottom of your symptoms.Good Luck to you. I hope you get the answers you deserve SOON.
    Anonymous 42789 Replies
    • February 12, 2008
    • 01:52 AM
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  • I have all kinds of blood work for Lyme and Lupus and all came back negative. A couple of times the whit blood count would be low and my sugar high and the only thing that has come back in my tests is high cholesterol the good and bad. I have had MRI's on my back and have degenerative disc disease, spondylothesis, curvature of the spine, my tailbone is curving towards the middle of my butt cheek, I get sciatica, sometimes I have wet my pants from my legs going numb. I had a MRI on my left hip and it doesn't sit in the socket right and had another MRI a year ago and had a partial tear in my rotator cuff in my left shoulder. I also ad chest xrays last year that showed bacteria in my lungs. Now the MRI on my shoulder shows normal but yet I cannot hardly use that arm, can't sleep due to the pain. All my blood work comes back negative. I have been to the ER due to feeling like I couldn't breathe and would cough up a chunk of bloody hard mucous and felt like under my skin was on fire but they found nothing. Then I went in b/c my shoulder hurts so bad, can't lift it or if in a sling can't move it away from my body, my fingers on that arm are colder then my right. I have poor circulation to my feet b/c they are always like ice, my joint hurt when weather changes or when I get stressed and my muscles are weaker and hurt. Doing day of house cleaning puts me in bed for 2 days. I used to be an very active person, I would canoe, ride horses, go for hikes, hunt, fish etc and now if I walk to the mailbox I feel like I'm gonna die from pain. I am not overweight, I am 5'4" and weigh 130 and am 36. Every Dr I have been to tells me I have too much pain in too many area's for it to be real. I have a high pain tolerance due to growing up poor and my mom couldn't afford Ins so unless we were dying we better not complain. I had a partial hysterectomy last Aug. and couldn't sit still for the 2 weeks I was supposed to and didn't even use the pain meds they gave me so why is it Dr's think I am a liar or some freakin junkie? I am tired of it and tired of having to start all over again and again, life is not worth all of this and I push myself to be normal for my hubby's and children's sake but then I pay dearly later. Does a Dr really think I want to look out the window an see my horse and know I can't ride him, or that I have a husband and can't have sex b/c it causes me too much pain afterwards or that I can't go on my childrens field trips out of fear of wetting my pants or getting too tired t keep up? Do they think I like being stared at when I have a rash b/c it looks like open wounds like a meth head gets from picking at themselves, or not have bowel movements but once a month at most? My goodness do they really think I would choose all of this rather then be normal, have fun with my kids and function normally so I could make good money? I was making $40K a year and now I make $10k woohoo don't ya'll wanna be just like me?
    sickntiredofdrs 3 Replies
    • February 12, 2008
    • 04:20 AM
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  • BTW the Dr who told me to see a shrink is an Internalist and the other Dr who said it to me was a D.O. and I live in a small town so they have all chatted about me and so they all treat me that way unless I go into the big cities I am scared I am never gonna get real help.
    sickntiredofdrs 3 Replies
    • February 12, 2008
    • 04:45 AM
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  • I'm so sorry. How far away is the closest big city?They chatted about me too. I don't think they ever chatted again about how wrong they were after I got diagnosed, though...The only reason I suggested the internist was because their training is more focused on internal medicine problems- and whatever you have falls into this category I think. For example, rheum and endocrinology are subspecialties of internal medicine (neuro is it's own thing though).Family doctors get their training spread a little thin, it seems. They have to rotate through pediatrics, surgery, OB/GYN, etc and this may dilute their exposure to internal med types of cases (each program is three years typically and internists tend to rotate through more internal medicine subspecialties, perhaps enhancing their expertise).Since your case is out of the ordinary, apparently, you need someone who has had a greater chance of seeing your condition before. That's the only reason I suggested the internist. I've met several who were unkind, too. You are not alone in what you are going through, so please don't feel alone, even though your husband maybe does not realize how ill you are. This is amazingly common- that's why I post here. I hate the thought of women (and men) going through what you are going through. I was just reading the other day that people with rare diseases spend an average of 5 years undiagnosed. I think one of the posters here even went well over a decade before getting diagnosed with Lyme disease. I've also heard of a lady going 11 years with celiac disease and her doctors accusing her of being anorexic. They told her to eat lots of breads and stuff and sent her to shrink after shrink and the whole time she shouldn't have been eating wheat. I'm thinking you might have something rheumy or endocrine, but it's just a guess. Have you been checked for celiac?Well, try to hang in there. We are all rooting for you here and hope that you find a doctor who can figure this out for you. Also, don't be shy about seeing a particular kind of specialist more than once. It took me 8 neurologists to figure my case out. I'm glad I didn't throw the towel in at 7.Best Wishes.
    Anonymous 42789 Replies
    • February 12, 2008
    • 07:16 AM
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  • There should have been another post by me between 3 and 4, it was long more detailed post by me. Where is it?
    sickntiredofdrs 3 Replies
    • February 12, 2008
    • 07:22 PM
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