Discussions By Condition: I cannot get a diagnosis.

Can anyone help,can't get diagnosed?

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: Bridge27
  • September 20, 2008
  • 05:54 AM

iI am a 34yr. old female, have been going to many doctors for about 4 yrs.
I have slightly elevated CRP & Sed Rate, always tired, waking up in the morning feeling like someone has beat me up, muscle spasms, dizziness, postive Rheumatoid factor test but no joint damage, Migraines, depression 1-2 weeks before menstration. I WAS diagnosed w/Sarcoidosis due to high ACE levels but x-rays show normal, now they say theydon't know if I have Sarcoid maybe it is Fibromyalgia. I have been told it was Lupus but negitive ANA keeps coming back to Fibromyalgia????? Has anyone had a similar experience? I want to know what is wrong but I am confused & my
Rheumatologist says Fibromyalgia is a waste basket diesease & they put all the symptoms they don't have an ansewer for in it :confused: he says he will not order any more test to research further causes, but he would like me to keep getting my CRP & ACE levels checked? I would greatly appreciate any HELP from anyone who could possibly "shed some light" on this for me
should I pursue it with another Doctor posibly Neurologist for MS or nuero problems ????????????? so CONFUSED PLEASE HELP! Thank YOU!

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13 Replies:

  • Has your doc tried you on a round of steroids to see if you respond?? CRP is related to inflammatory process ie.RA,Sarcoidosis,Lupus. Very general reaction in most bodies. ACE indicates other fibrotic problems, like the sarcoid or silicosis fibrosis, mostly in lung tissues. I myself am undiagnosed with ???? but responded well with steroids and baclofen for the muscle spasms. my RA is neg though, but have erosive arthritis of PIP joints in hands and feet and up to wrists, with contractures of fingers. MRI & bone scan showed these. Never give up!!! It's been a year and I'm tired of the "psychosomatic" diagnosis they give me!! No one will commit to diagnosis, but looks like "probably primary lateral sclerosis" but MRI of brain is clean and not sure of how it started. That's why most odd diagnosis are "Auto-Immune" because we don't understand the inflammatory response. Just treat the symptoms. Find a new rheumatologist if yours won't even listen to you. Neurologist is a good idea too, especially with the balance problems. Hope it helps!!! Chin UP and Keep Pushing - DOCs don't know it all!!
    GSMomof3 1 Replies
    • September 21, 2008
    • 01:16 AM
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  • Thank you for your suggetions, I have mention to Drs. that Dexamethasone during a suppression test did make me feel better its a steroid I believe????? I think I need to find another Doctor. I appreciate your words of encouragement!!!!!!!!!! No one seems to understand except for those of us struggling with the " M.D.s" of this world. Thanks again I will try to update you as I learn more. Bridge27
    Bridge27 14 Replies
    • September 21, 2008
    • 10:53 PM
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  • http://forums.wrongdiagnosis.com/showthread.php?p=120164#post120164 Come on over and check out the list of b12 deficiency symtoms. The good thing about the b12 deficiency hypothesis is that it can be quickly tested with a trial with natural b12s and cofactors.
    Freddd 3576 Replies
    • September 23, 2008
    • 05:22 PM
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  • I will check it out! Thank you all for your help!I will not give up! Bridge 27
    Bridge27 14 Replies
    • September 26, 2008
    • 02:43 AM
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  • Hello, Well do you have or have you had any ocular symptoms? skin rash? maybe because it would help us to diagnose or to suspect in sarcoidosis. of course you need to get control tests i wouldn't discard this diagnosis specially if you respond well to steroids.Do you have muscle weakness? Maybe other symptoms, like skin symptoms? any rash that you remember? Maybe tremors? Maye a thyroid problem such like hashimoto's disease those patients have similar symptoms and in this disease the FR sometimes is possitive.fever?
    paules86 18 Replies
    • September 27, 2008
    • 03:22 AM
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  • Hi Paules 86, Thank you for your suggestions. I do have muscle weakness & another Rheumatologist that I have seen before the one I see now did say I may Develope Hashimotos in the future. I do not have ocular problems except for some blurred vision and I do have tremors especially at night.I do get a facial rash which was why they suspected Lupus but they think it maybe roscea???? but I do not get it all the time. I really appreciate your response & I will not give up though alot of times I feel like it.Thank you , I appreciate your time!!!!:)Bridge27
    Bridge27 14 Replies
    • September 27, 2008
    • 07:36 AM
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  • I agree that fibromyalgia is a catch all but heed this warning: I was given rounds of steroids over and over again when I was having "bouts" and I truly believe that they hastened my bone dejeneration! I had avasular ostoenecrosis and have now have had two hip replacements! Don't take the steroids without asking about the possible side effects like I did. :(
    ScaredCrazy 8 Replies
    • September 27, 2008
    • 04:45 PM
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  • Thanks for the info, I truly do NOT want to take any steriods but I did notice an improvement, but I guess steroids would make any "FEEL" betterif they have been feeling so bad for so long! I will heed your advice !Thank you for taking the time to write!Bridge27:)
    Bridge27 14 Replies
    • September 28, 2008
    • 08:28 AM
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  • Dear Bridge27: I have worked in genetics for 17 years. I am not a doctor or have any medical training. You are talking about labels. Labels work in the doctor's office but they don't work too well with the bodies. Your body is already set up genetically to do certain things. An example would be high cholesterol. Some people just have high cholesterol because their own body makes it incorrectly. BUT, if they eat fatty meat in abundance, their numbers will skyrocket. Then, they get the label of High Cholesterol. Same thing works with many labeled diseases. Mostly, its what you eat that makes the problem. Very unknowing to you, the metabolism in your body may be the pure secret. You are probably doing nothing wrong but your own particular body can't accept something and metabolize it. I have many of the labels you have. Our ancestry is northern europe coming from China. A select group of us had short ancestors who blended with tall ones and brought a number of underlying factors. The sad thing is that the docs only use X rays and blood work and your cells don't always respond to that. My T3 and T4 have always been fine. No thyroid problems. BUT, I grew a huge goiter, cancerous nodules and had to have surgery. T3 and 4 exams are only good for certain things. You have a classic group of ills that fall into several categories. I don't know what I can and can't say on here. But, if you live near N.C. or even if you don't contact this doctor. Jorge D. Flechas, M.D.He has special tests that can change your life. Some interesting reading on his website, too. I am one of his patients. Not healed, but life's a lot better. Fibromyalgia is a real illness, not a catchall. It can come from the Mother or the Father and is caused by the elastin in your body not working properly. A liver protease is faulty through ancestry that may start the error. As you age, it becomes more of a problem. It's all about ancestry.You did not cause it, nothing happened to you bad, that's garbage stuff. Usually, to get a correct diagnosis of Fibromyalgia you need specific pain in Trigger Points. Go to their website and there is a diagram. If you do not have specific pain in these places, that's not your label. Lupus has its blood work, etc. MS, its brain lesions. The sed rate is a major clue. I imagine you have a mixture of labels that are confusing to doctors. They get tire of us because they wern't trained in genetics to understand why we are sick. Most know little about nutrition. My label list has about 16 things on it. I know how to over ride about 12 of them. The Tic does not make Lyme Disease. You are already set up inside, the tic brings it out of you. I have helped hundreds to see through a tunnel. Docs have no clue.The most special thing I can tell you is that you are not alone, we have lots of company. I care!Will keep you in my prayers. hopabout
    hopabout 3 Replies
    • September 28, 2008
    • 06:26 PM
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  • Dear Bridge27: I have worked in genetics for 17 years. I am not a doctor or have any medical training. You are talking about labels. Labels work in the doctor's office but they don't work too well with the bodies. Your body is already set up genetically to do certain things. An example would be high cholesterol. Some people just have high cholesterol because their own body makes it incorrectly. BUT, if they eat fatty meat in abundance, their numbers will skyrocket. Then, they get the label of High Cholesterol. Same thing works with many labeled diseases. Mostly, its what you eat that makes the problem. Very unknowing to you, the metabolism in your body may be the pure secret. You are probably doing nothing wrong but your own particular body can't accept something and metabolize it. I have many of the labels you have. Our ancestry is northern europe coming from China. A select group of us had short ancestors who blended with tall ones and brought a number of underlying factors. The sad thing is that the docs only use X rays and blood work and your cells don't always respond to that. My T3 and T4 have always been fine. No thyroid problems. BUT, I grew a huge goiter, cancerous nodules and had to have surgery. T3 and 4 exams are only good for certain things. You have a classic group of ills that fall into several categories. I don't know what I can and can't say on here. But, if you live near N.C. or even if you don't contact this doctor. Jorge D. Flechas, M.D.He has special tests that can change your life. Some interesting reading on his website, too. I am one of his patients. Not healed, but life's a lot better. Fibromyalgia is a real illness, not a catchall. It can come from the Mother or the Father and is caused by the elastin in your body not working properly. A liver protease is faulty through ancestry that may start the error. As you age, it becomes more of a problem. It's all about ancestry.You did not cause it, nothing happened to you bad, that's garbage stuff. Usually, to get a correct diagnosis of Fibromyalgia you need specific pain in Trigger Points. Go to their website and there is a diagram. If you do not have specific pain in these places, that's not your label. Lupus has its blood work, etc. MS, its brain lesions. The sed rate is a major clue. I imagine you have a mixture of labels that are confusing to doctors. They get tire of us because they wern't trained in genetics to understand why we are sick. Most know little about nutrition. My label list has about 16 things on it. I know how to over ride about 12 of them. The Tic does not make Lyme Disease. You are already set up inside, the tic brings it out of you. I have helped hundreds to see through a tunnel. Docs have no clue.The most special thing I can tell you is that you are not alone, we have lots of company. I care!Will keep you in my prayers. hopabout Hi Hopabout, I can't say that I'm at all clear about what you said or were trying to say here. A tick carries the Lyme disease bateria and transmits it to humans. I have no idea what "The Tic does not make Lyme Disease. You are already set up inside, the tic brings it out of you. " means. As far as the causes of fibromyalgia go, I'm cured, having no idea about elastin. I do say CURED of fibro as I no longer have all the symptoms. In fact I no longer have ANY of the symptoms to any significant degree. All of the symptoms cleared up with the correct nutriants. Essentially 100% of the FMS symptoms are a subset of the methylb12/adenosylb12/methylfolate deficiency syndrome list. It is heritable, all three of my children also have the same set of genetic problems leading to the same defieicncy syndrome and respond to the same set of nutriants in almost identical fashions. Goiter is caused by a lack of iodine which is a nutriant needed by the thyroid to function. So nutritional deficiencies certainly do cause a lot of problems because of underlying problems in their metabolism etc. I was very ill before finding the correct selection and amounts of nutriants. You are right about the tests not being able to catch a lot of these things. Many of the folks here could benefit from checking out the list of b12 deficiency symptoms. Taking care of that would simplify the rest of their picture in many cases. Good luck and good health.
    Freddd 3576 Replies
    • September 28, 2008
    • 11:16 PM
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  • Hi Freddd & hopabout Thanks for the info hopabout, I am kinda confused but I do believe that all tests do not catch everything. I appreciate your reply. Hi Freddd, I have had my B12 checked and they said it is normal .... is there a more specific test they can run? I do have extremely low vitamin D and was put on 50,000 iu a week, but that was about 5 mo. ago. Thank you for your time!Bridge27
    Bridge27 14 Replies
    • September 29, 2008
    • 05:37 AM
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  • Hi Freddd & hopabout Thanks for the info hopabout, I am kinda confused but I do believe that all tests do not catch everything. I appreciate your reply. Hi Freddd, I have had my B12 checked and they said it is normal .... is there a more specific test they can run? I do have extremely low vitamin D and was put on 50,000 iu a week, but that was about 5 mo. ago. Thank you for your time!Bridge27 Hi Bridge, You can be dying of functional deficiencies and still have "normal" b12 by the serum level test. THe serum level test is less than genuinely useful. THere are two more tests, uMMA and homocycteine that might indicate a specific biochemical breakdown point, but might not. The problem is that none of the 3 tests can definitively say that you don't have functional deficiencies. The only definitive test is a trial. Then you run into the problem that both cyanob12 and hydroxyb12 are not active, they have to convert to the active form in the body and that doesn't happen for some people. The methylb12 and adenosylb12 are about 1000 times more active as they are the genuine active varieties. The only problem there is that some brands don't work well at all and a couple work great. As I suggested, come on over and check out your symptoms against a reasonably complete list. Then if your symptoms match up pretty well, take a trial. In one study 2/3 of the people that had a beneficial result from methylb12 would never have been in the study if they used the usual testing criteria instread of symptoms. Testing results can't tell you if you will benefit from methylb12 and/or adenosylb12. I was taking 1000mcg cyanob12 per day for decades and was dying of deficiencies. In 5 years I have healed tremendously after a lifetime of illness and disability.
    Freddd 3576 Replies
    • September 29, 2008
    • 04:01 PM
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  • Hi Freddd, I will check it out, and thanks for your help! Bridge27
    Bridge27 14 Replies
    • October 1, 2008
    • 05:20 AM
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