Discussions By Condition: I cannot get a diagnosis.

Please Help

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: puglovernkellogg
  • April 22, 2008
  • 08:09 PM

I have been sick for a long time. I have severe joint, muscle and nerve pain. I have abdominal adehesion disease from having had 9 abdominal surgeries and a hysterectomy a year ago for endometriosis and Polycystic Ovarian Disease. I was diagnosed with Interstistatial Cystitis and have undergone various treatments for this with no relief. I get frequent infections, rashes, can not be in the sun without getting sick, joint swelling and pain, absesses that have required 15 surgeries to remove, chronic High White Blood Count, Chronic Elevated Sed Rate, Chronic Elevated C-Reactive Protien Levels, Low Vitamin D levels, High Neut#, High Platlet, Low Creatinine Levels, etc. My ana was negative and so were my immunoglobulin levels. My doctor told me that he knows I have inflammation etc but he is not going to look any further into finding out what is causing it. He said that I need to suck it up and deal with it. He told me that he is going to take me off my pain medicine and to see a shrink (after I started to cry). I really do not know what to do at this point. I live in a remote area in Idaho but have been seeing doctors in Spokane, WA. I really need help. Can anyone help me? Thank you.

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  • I have been sick for a long time. I have severe joint, muscle and nerve pain. I have abdominal adehesion disease from having had 9 abdominal surgeries and a hysterectomy a year ago for endometriosis and Polycystic Ovarian Disease. I was diagnosed with Interstistatial Cystitis and have undergone various treatments for this with no relief. I get frequent infections, rashes, can not be in the sun without getting sick, joint swelling and pain, absesses that have required 15 surgeries to remove, chronic High White Blood Count, Chronic Elevated Sed Rate, Chronic Elevated C-Reactive Protien Levels, Low Vitamin D levels, High Neut#, High Platlet, Low Creatinine Levels, etc. My ana was negative and so were my immunoglobulin levels. My doctor told me that he knows I have inflammation etc but he is not going to look any further into finding out what is causing it. He said that I need to suck it up and deal with it. He told me that he is going to take me off my pain medicine and to see a shrink (after I started to cry). I really do not know what to do at this point. I live in a remote area in Idaho but have been seeing doctors in Spokane, WA. I really need help. Can anyone help me? Thank you. I am so sorry you have been so sick. Have you been tested for Lymes? Epstein Barr? Don't let the doctor shrug off your problems! Make sure they do the right tests. That's a crazy amount of abdominal surgeries! Is this because of the endo? Please consider trying acupuncture and Oriental Medicine to help your symptoms. Or if you can find it NAET would be very helpful. Often inflammation occurs in autoimmune dysfunction, and the roots of this dysfunction can be in a chronic allergic condition. Celiac is a prime example of this - google this and make sure they have tested for it. Food intolerances are nearly always overlooked by docs - so is candida overload. Please do some research on these two things: Do you have chemical sensitivities? Do some foods make you ill? Do you have chronic yeast problems or sinus problems? IBS symptoms? NAET can help diagnose and REVERSE an allergy or intolerance. Please research this at www.naet.com. It is NOT a quick fix and takes multiple treatments. But it can make a difference. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Sounds like a prescription for some radical dietary changes ala Dr. Lorraine Day's protocol (even though it is for cancer ) -I beleive these diseases are arising from nutrient imbalances, toxins etc.
    LINENUP 122 Replies Flag this Response
  • That is absolutely horrible that your doctor refuses to look into what is causing your inflammation! I feel like I am always recommending this, but have you ever been tested for any other autoimmune diseases such as lupus? Autoimmune diseases can cause joint, bone, muscle, and nerve pain in addition to sun sensitivity. Also, since you already suffer from one autoimmune condition it makes you more prone to others. I'm glad that you are going to other doctors, I'm just so sorry you have to travel so far to do it. Have you seen a rheumatologist?
    GD2005 61 Replies Flag this Response
  • Yes I went to Seattle which is 8 hours from me and saw a rhematologist who did all the blood work on me to find out about my elevated sed rate and C-reactive protein levels. She also tested my ANA levels but they were negative so she was going to consult with her board of rheumatologists and then I never heard back from her and can not get in touch with her. I then had my Family dr the one that is not helping me send me to his rheumatologist here and she did not look at any of my blood work or order any other blood work she said that since my ANA was normal I did not have a connective tissue autoimmune disease. That was it so really i have not a clue what to do at this point.
    puglovernkellogg 3 Replies Flag this Response
  • I have not been tested for Ebstein Barr but I was tested for Celiac and Lymes and both were negative Nobody in my area or anywhere around me does the Naets I have already looked into it and I have tried accupunture and massage but did not help me. Thank you for your reply. Yes all of my surgeries where for endometriosis and misscarriages etc. I am so sorry you have been so sick. Have you been tested for Lymes? Epstein Barr? Don't let the doctor shrug off your problems! Make sure they do the right tests. That's a crazy amount of abdominal surgeries! Is this because of the endo? Please consider trying acupuncture and Oriental Medicine to help your symptoms. Or if you can find it NAET would be very helpful. Often inflammation occurs in autoimmune dysfunction, and the roots of this dysfunction can be in a chronic allergic condition. Celiac is a prime example of this - google this and make sure they have tested for it. Food intolerances are nearly always overlooked by docs - so is candida overload. Please do some research on these two things: Do you have chemical sensitivities? Do some foods make you ill? Do you have chronic yeast problems or sinus problems? IBS symptoms? NAET can help diagnose and REVERSE an allergy or intolerance. Please research this at www.naet.com. It is NOT a quick fix and takes multiple treatments. But it can make a difference. Best wishesDOM
    puglovernkellogg 3 Replies Flag this Response
  • Sounds like you definately have an infectious etiology going on. Most of the doctors are not going to address this issue - I could speak volumes for that one. I would suspect some rogue bacteria or mycobacteria, mycoplasma, microsporidia or protozoa infection. That ought to narrow it down! LOL Perhaps a request to see an Infectious Disease doctor might the way to go. In my experience (very similar to yours) many treatments (both traditional and alternative) are not going to work until you get down to the root cause. And I would say it is these 3 ::: 1) killing off the bad bugs 2) nutrient intervention I would suggest you go to traceelements.com 3) removal of heavy metals and environmental toxins. Dr. Jonathan Wright is in Tacoma his link is http://www.tahoma-clinic.com/
    LINENUP 122 Replies Flag this Response
  • I should add that the joint, muscle pain and Chronic Elevated C-Reactive Protien Levelsare indicative of an infectious etiology. C reactive protein would be a sign of a bacterial agent creating this. Here is a link about institial cystitis and DMSO http://www.ichelp.org/default.aspx?tabid=225
    LINENUP 122 Replies Flag this Response
  • wow thank you so much I will check it out. Your negative Lyme means el zippo. Mine was negative over and over again, and so far I test positive for Lyme, babesia, and several viruses, mostly from having my doctors ignore this systemic infection and keep sending me to shrinks. PLEASE join Lymenet. They will help you find a doctor to treat and tell you which labs are most accurate. IGeneX picked up my Lyme first try. I lost my uterus and left ovary to this disease (endometriosis), chronic pelvic pain, I have low vitamin A and D both, low immunoglobulins, I could go on and on. Join Lymenet and post that you need a doctor brave enough to treat Lyme in your area. Click on "symptoms": http://www.canlyme.com/ When to Suspect Lyme: http://www.angelfire.com/biz/romarkaraoke/whento.htm Lymenet: http://flash.lymenet.org/ubb/ultimatebb.php
    puglovernkellogg 3 Replies Flag this Response
  • Are the abscesses healed? This could explain some of your findings if not. Have you considered asking to be referred to an infectious disease specialist? How about yet another rheumatologist? I have a rare neuro disease and it took 8 :eek: neurologists to figure it out. Of course, being so far away from a city or teaching hospital limits how often you can try out different specialists. I live pretty close to several teaching facilities which made it easier. Is there a friend or relative who lives in a major city you could visit/stay with while getting diagnosed? One thing that can make things way easier for any new doctor you see is to keep a list of all previous labs done and their results- including the normal ranges provided by the lab. this will really help save time and money from repeating tests.As for being referred to a psychiatrist- you are not alone. I imagine that you probably cried out of pure frustration for having all these symptoms and findings- and no solid answers. Some doctors are very insensitive in this way. Please don't be discouraged. I know I wanted to give up many, many times, but am glad now that I didn't- even though most of my doctors kept calling my illness "psychosomatic".best wishes.
    Anonymous 42789 Replies Flag this Response
  • Your doctor won't pursue solving your medical puzzle anymore? Get rid of him; your mental state didn't cause abcesses. I read two different posts hear that I thought made sense as to an avenue to pursue; one mentioned lyme disease and another mentioned a bacterial infection. My husband is having problems and some of the symptoms bear a similarity to lyme disease; however, I believe he has some rickettsial disease. I've done a lot of research on rickettsias and they are a cross between a virus and a bacteria with a variety of types. They can be gotten from a bite from a flea, or body lice and I THINK I READ some can be gotten from aersolized matter (dust from droppings (?) Have you had a mouse problem (mice can have fleas) in your house or rented a costume that someone else might have worn (body lice)-think along those lines as to possible methods of acquiring the infection. Good websites: www.umm.edu, www.healthatoz.com, www.emedicine.com
    hazelfiver 5 Replies Flag this Response
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