Discussions By Condition: I cannot get a diagnosis.

help

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: bellasmom
  • February 12, 2008
  • 08:57 PM

Hi

I don’t know where to begin- I am a 38 year old female and live in Philadelphia Pennsylvania- I delivered a baby girl 4 years ago was relatively healthy prior to it- had some complications that went undiagnosed until the end of my pregnancy but became very sick pre eclampsia possibly HELP syndrome seizures, gestational diabetes, infections, etc. After I delivered my daughter I remained hospitalized and developed high fevers – for the most part undiagnosed and thought to be an endometritis. I also developed several spinal problems and numbing and back problems and bladder failure said to be from a separate thing maybe epidural or something- not sure but they think it’s completely separate. I have been very ill and almost completely unfunctional over the last 4 years and getting worse with many many different things going on mostly worked up for multiple sclerosis which they now ruled out but they keep going back to an autoimmune disease such as lupus or a vasculitis or could it be an unidentifiable infection. I have lesions on liver assumed to be hemangiomas but it started as 1 there are now 3 or more. My lungs first had actelactasis then one or 2 nodules then more nodules then it went from one lung now there are nodules on both and they are too small to biopsy. I have coughed up blood before but the worst was about 8 months ago clumps and clumps and have several times since then. I experience really bad pain behind my right lung and now can barely breathe am very short of breath cant walk more than a few steps have to sit down between short of breath and weakness in legs. On top of that I have had urine decrease since I delivered my daughter but it kept getting worse and worse they said due to bladder- I have had blood and casts in my urine for quite some time and now even have some blood in toilet visible. They keep telling me I don’t have kidney disease because my BUN and Creatnine are fine but one nephrologist thought since I had coughing up blood, blood in urine, casts, severe flank pain, paleness that it was worth being tested for a specific lung kidney connection which is what he did. I tested positive for the anti glomerular antibody membrane. I was tested 2 more times and it was positive again. I went to visit another nephrologist since the first one wanted me to wait 6 months before they did a biopsy and the second one feels my kidneys are fine regardless of the blood and the flank pain because the ultrasound and catscan show them as normal and my bun and creatnine are normal. I have put on 55+ lbs in a month or 2 and feel so fluid filled. My rheumatologist was concerned but the nephrologist convinced her I don’t have goodpasture syndrome because of the BUN and creatnine levels were fine but another nephrologist had done 2 24 creatnine clearance tests and they showed me in stage 3 kidney disease or failure. I feel my health is progressively deteriorating I am blowing up like a balloon, my legs hurt so bad on top of numbing and my right side between my lung kidney and lower back pain is beyond what the narcotics can even dull. My rheumatologist said she doesn’t know what to do she cant find a nephrologist to do the kidney biopsy so she doesn’t know what she can do but this is a fatal disease and a few months have gone by since the first positivity test and I don’t want to wait too long- what should I do? They don’t know what to do they said most of them never see a patient in their careers with this disease because it is so rare. is that possible between my abnormal urine tests, lack of urine output, blood, etc I could have kidney disease? Also could the test be inaccurate and I not have the disease even if it came back 3 times positive?

Reply Flag this Discussion

9 Replies:

  • Blaze thanks so much for getting back to me- I will check it out- I did test positive to the new Lyme titer about 2 years ago but they said it was nothing and never went anywhere with it. I tested positive for the goodpasture which is really scarey because its fatal if left untreated and I kept telling them I am barely hanging on and they make it like its in your head. I keep praying help comes soon. I hope you are getting better- are you getting treatments and are you back on your feet and functioning? thanks again for the help- take care and hope you are doing ok!
    bellasmom 9 Replies
    • February 13, 2008
    • 01:35 AM
    • 0
    Flag this Response
  • Thanks Blaze- I will go on and join. It is frightening what is happening with doctors anymore- they keep claiming malpractice pity but isnt no treatment a form of malpractice or neglect- I am being worked up for a disease that is fatal if left untreated and they are dragging their feets while I get sicker- just crazy. I cant believe that ID doctor wouldnt treat you either its just nuts to me- I never heard of microwave disease its making you sicker because of all the things in the air? well I hope you get better and things start to improve. take care
    bellasmom 9 Replies
    • February 13, 2008
    • 02:58 AM
    • 0
    Flag this Response
  • modern microwaves are no cause for concern unless improperly cared for according to Dr. Hazel Parcells..if food spills get in the closing part, then the microwave can leak out causing problems...but, when I asked the doctor about this in the 80s, she responded that they are safe unless dirty or malfunctioning. I believe your energy should be spent elsewhere to look for the cause of your conditions.I think you began as a severe hormonal /glandular condition at the birth, along with an infection and also damage due to anesthesia. You didn't mention your weight, but I sense that is coming in and affecting the condition. Right now, there is a kidney problem coming in. It would appear that the kidney doctors don't know how to read kidney tests correctly. My aunt was told stage 4 or something when she was really stage 1 the next week with the new doctor...you shouldn't have to wait, however. It's difficult for me to interpret the various conditions that you speak of. You must be so fearful and sad. It's difficult. I don't have the answers for you but encourage you to find a hospital that will help you...some special type of hospital, perhaps out of state. They may provide you with the service, diagnosis and assistance that you require. How is your child doing? Is she healthy?
    Monsterlove 2921 Replies
    • February 13, 2008
    • 08:46 AM
    • 0
    Flag this Response
  • Monsterlove,thanks so much for getting back to me- oh I know microwaves are not doing this to me I was just asking Blaze about their condition- mine is purely medical and to be honest most of it was induced from untreated things in my pregnancy and then no doctors were willing to help me since it was from my delivery and now they thought it would all go away but whatever "it" is just continued- I have multiple lesions on my liver, multiple lesions on my brain, spine, nodules in both lungs neuropathy losing vision and so many other things I have a failed neurogenic bladder and all of my female organs are pretty much toast but they are leaving it because I am in no condition for a major operation the last time they went in i hemorrhaged but colon, bowel, bladder and tubes were adhered to other things and they couldnt be separated. I have seen over 50 doctors and they keep me dragging on because noone will go back and admit it had a lot to do with the delivery and the possible infection cannot be found and when they see something they always blame it on something else. I seriously have kidney issues I have EVERY indicator but they feel protected if they do nothing because my BUN and CReatinine levels are fie- the one nephrologist even admitted that sometimes the levels dont go out of whack until you are in end stage renal disease- why do they have the right to do this to me? I just wanted to get treatment before I need dialysis and or a transplant they have already mentioned both but still feel its best to sit and watch????? My bladder they ignored me for 3 1/2 years and then finally diagnosed me with a failed bladder and said I have to catheterize myself 4 to 6 times a day for the rest of my life. I graduated HS have between an associates and bachelors and was up for a vice presidency position in my company and now I am a completely disabled unfunctional human being that cant help themselves no matter what I try to do. I want to be here for my baby girl and she has had me minimally since she was born- it just sucks sometimes- I feel very blessed on the other hand that i am still alive and I made it this far but I just dont believe what cna occur in todays world and you cant get help. You asked about the baby- Bella is doing fine I have a few concerns and or things she still does that have me concerned with her breathing and or heart but they checked it out and say shes fine- her first year was terrible you could tell something was really wrong- she saw a cardiologist she used to have spells that were like seizures they tested her and everrything came back ok and we said thats enough I dont want to put her through anymore and most of it resolved just once in a while she has these small occurences but it doesnt seem like anything major and they just make it like its in my head anyway so I just pray and it seems ok for now- thank you for asking about her- she is by the way also developing now on schedule and actually a little advanced so things worked out- kind of makes what i am going through no problem if she stays ok- my dream would be for both of us to be healthy if I could have it though! You seem to have a lot of knowledge do you or did you have problems as well or are you in the medical field? thanks again for the help and advice you are kind
    bellasmom 9 Replies
    • February 13, 2008
    • 07:37 PM
    • 0
    Flag this Response
  • These are other conditions that resemble Goodpasture's Syndrome. Doctors call them "differential diagnoses," fancy terminology for other illnesses that have similar symptoms: Glomerulonephritis, AcuteGlomerulonephritis, ChronicGlomerulonephritis, CrescenticGlomerulonephritis, Diffuse ProliferativeGlomerulonephritis, MembranoproliferativeGlomerulonephritis, MembranousGlomerulonephritis, Nonstreptococcal Associated With InfectionGlomerulonephritis, PoststreptococcalGlomerulonephritis, Rapidly ProgressiveInfective EndocarditisPneumococcal InfectionsPneumocystis Carinii PneumoniaPneumonia, BacterialPneumonia, Community-AcquiredPneumonia, FungalPneumonia, ViralPolymyositisPulmonary EosinophiliaRespiratory FailureSystemic Lupus ErythematosusUndifferentiated Connective-Tissue DiseaseWegener Granulomatosis
    aquila 1263 Replies
    • February 13, 2008
    • 08:33 PM
    • 0
    Flag this Response
  • You mentioned you live in Philly? Have you explored alternative approaches to treating your illness? If not, WHY NOT?!! I highly suggest finding a NAET practitioner and/or acupuncturist/herbalist to help you. Chinese medicine is very helpful and NAET can be life changing (not for everyone, but often can make a huge difference). NAET is Nambudripad Allergy Elimination Techniques. Research this. There should be a lot of practitioners to choose from in Philly...I know of one colleague practicing there, and if you tell me what area of Philly you live I may be able to find one near you. Or visit www.acufinder.com and type in your zip code. I cannot recommend this enough. If I had relied on Allopathic medicine to help me after the birth of my daughter (long story, but lots of complications and hemorrhaging), I know I would be in bad shape. NAET and acupuncture have made a huge difference in my life. My last question is this - are you on birth control or using an IUD? Are you taking any medications currently? Best wishesDOM
    acuann 3080 Replies
    • February 14, 2008
    • 03:22 AM
    • 0
    Flag this Response
  • I studied a type of medicine with a famous doctor back in the 70s. She always cured the uncurable. I never practiced because I never became a doctor...fear of practicing medicine without a license. Many of her students have had successful careers as alternative (psychic) healers. One I would go to is in Santa Fe if I was in trouble but last I talked with him was ten years ago and he was charging $400 back then for a series of treatments. We only use a drop of the person's blood and take it from there, doing the healing over it and all. Yes, I should have pursue a career in medicine, but could never afford or never had the right situation or location to do the training being a single mom...now I have almost completed my school superintendent's license...another month to six weeks. I only practice medicine on family members, having raised my daughter in this system that the doctor taught..Dr. Hazel Parcells...an incredible lady who worked and lived to be 106...my laboratory is pretty shot now, with broken equipment (after a good 30 year use)...my sister was my worst case with viral pneumonia and in the hospital for two months...they didn't know why she lived..died once....I worked on her day and night...sometimes I feel her standing over behind me as I type this column..telling me to tell them this and tell them that...I wonder if anyone ever listens...Did they put you on the strict kidney diet???
    Monsterlove 2921 Replies
    • February 14, 2008
    • 04:09 AM
    • 0
    Flag this Response
  • Aguila thank you so much for getting back to me- acute glomenularnephritis is what it looks like I have which is a part of goodpastures- I already tested positive for lupus and ANA but for some reason she is hesitant on treating- there is so many things I want to do and research and I have been doing that for 4 years but what is happening is my body is physically stopping, cant walk much cant hold my head cant stand for more than a minute so doing much of anything is hard right now I barely make it to drs appts- if I just get some energy back I can move forward with some things. thanks for your advice.
    bellasmom 9 Replies
    • February 14, 2008
    • 04:13 PM
    • 0
    Flag this Response
  • Acuann, thanks for all of the info- I live on the border between Philly and bucks county (19116)- I have not tried alternative approaches- do you have any ideas of which ones may be helpful- right now the details are lesions on my brain- some type of damage from brain maybe due to oxygen deprivation during delivery, optic neuritis I think its called- left and right some vision loss due to damage to brain, severe neuropathy from right side of brain through all the way down to right toes- determined to be most severe and non reversible form- not known what cause was, multiple lesions on liver, multiple nodules now on both lungs, metallic taste in mouth, seizures, visual blurry disturbances, severe pain to right side of head causing horrific migraines and beyond that - last from days to weeks, vomitting, coughing up blood from time to time, difficulty breathing started with exertion now even when still, cannot lay down need to be propped up at least 3 pillows or gasp for air, hand completely numb after typing or writing for seconds- takes me a long time to do anything if possible, walking is difficult and at times impossible, severe neck pain to points it cant be moved, severe spinal pain and lower back pain, cant bend down or get up by myself, cant really dress or bathe myself without assistance, cant stand on my feet for more than minutes at a time, severe amount of weight gain within the last few months- am 100 lbs over regular weight- 2 times during the last 4 years have dropped 50 lbs within 2 months and have gained at least that in short amounts of time I did nothing to do or undo any of these, urination is down to one time per day unless I have infection and then its 50+ times a day, I have a failed bladder and when I dont have infections I need to catheterize myself to go but I cant do that on my own so it doesnt get done. I have the very red patch across the face which is assumed to be lupus- I am being worked up for lupus, a vasculitis condition, have tested positive with light chains for multiple myeloma and now most frequently have dead on tests and symptoms for acute glomerulernephritis and goodpasture syndrome but doctors are playing tiddly winks and nephrologists that I need to confirm by biopsy refuse to do it and say my kidneys are fine but I have gross hematuria (blood) in urine tests for 4 years and getting worse, its visible in toilet I have white and red casts, I have vomitted blood even took pictures so you know its not in my head and I have such severe flank pain on right side- truth is I think they are afraid to do the biopsy as has every doctor been afraid to help me because I am so ill and my tests shows damage throughout most of my body and I hemorrhage everytime they touch me but 4 years ago when I first delievered my daughter there were only a few things wrong from the delivery and now because noone has treated me with anything other than narcotics to keep me functioning I have damage in almost every organ and am almost completely bedridden. My female organs are completely adhered and in a knot and they just wont operate I guess out of fear again- they said when they finally do I will probably have to have a full hysterectomy and probably lose part or all of colon and or bowel and they are so casual about it. sorry I went into detail so much but even if one little thing can be done to help holistically it would be great. We have an appt with one of the wait and see docs on feb 22nd which I am sure she will just try to keep giving me steroids and pain killers and not diagnose me- on the 29th my husband got me an appt with the head of nephrology at university of penn- he said it sounded like glomeruler nephritis and after testing positive for goodpasture he doesnt understand why a biopsy was not done its a requirement but the truth be told its been 4 months since I tested positive and 4 doctors are just sitting and watching. well thanks for all your info You said alot happened when delivering your daughter- are you better now- have the chinese and herbal medicines cured you? I am on birth control pills and have been for over 14 years- I had endommetriosis bad before I got pregnant they thought I would never have a baby I got pregnant in less than 2 months of trying- the endometriosis had been stable and I was free of pain and or problems for about 10 years after 2 laparoscopys and 2 colonoscopys and took nothing except birth control pills so i dont get my period so the endo doesnt grow. Meds yes I am on quite a bit- 3 forms of pain meds, birth control, seizure meds, 2 diabetes- 1 pill and 1 needle- never had before my pregnancy and it just continued because it never got diagnosed until after, I have extremely high cholestoral all the tests in the panel but I dont take meds for that although they want me to- I am supposed to be on like 6 other meds but I dont really believe in meds and would like to come off all of them and do take myself off them when I can. The pain meds I came off but then I couldnt even walk at all because of the damage done to my spine and the neuropathy on my right side has caused it to be dead and the only way to walk is with the pain meds, they tried therapy everything but I dont have control over it anymore same as from waist through bladder and all- they think i had damage from the epidural and it killed all the nerves but of course they only admit that off the record. well again sorry for the runon I am sure I am probably missing things too but thats it for tonight- my head is killing me and I fear my kidneys are not doing so well- usually with all the fluid my lungs and kidneys are first to feel it.Thanks again for your kind words and support and if you have any ides and suggestions I will give it a try- take care and blessings to you and hope you are doing better.
    bellasmom 9 Replies
    • February 15, 2008
    • 03:42 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.