Discussions By Condition: I cannot get a diagnosis.

HELP!! I'm afraid my mom is dying and no diagnosis or treatment

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: Valerieetal
  • March 29, 2009
  • 09:33 PM

Hi, I'm looking for anyone who can help me find help for my mom. She's 55 yrs old and up until 3 years ago has only been in the hospital to give birth. No medical problems her whole life but had to be given an emergency blood transfusion in 2006 her HB level was 3.0. We were told that she should have been in a coma but she was functioning and walking around not really "feeling sick". Since then she had been prescribed prednisone and her doctors have been trying to get her condition diagnosed. Lupus and RA have been ruled out so they're calling it autoimmune hemolytic anemia. She has been on prednisone at levels from 60-25mg but the side effects have been horrendous. She can no longer function properly, extremely fatigued (HB levelled at 10.7), joint pains, hair loss. She has been steadily declining and no one can give a definitive answer. Can anyone help? These are her original symptoms.- dark colored fingernails (very quick growing), no armpit hair, scabs in her scalp, stunted hair growth (overall), bleeding in the joints, pain on right side of face, skin rash, incontenence, cool to touch but internal fever and chills.
They are recommending she gets off prednisone and have prescribed Imuran. If anyone can offer some advice or recommend a specialist I would appreciate it. We live in NJ. HELP HELP HELP!!!!

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13 Replies:

  • Sounds like these problems surfaced after the blood transfusion, what had caused her to have to have trafusion? Accident?Has she seen a rhuematoligist? Pain and bleeding joints may have originated from Arthritis or other joint issue. Have they checked a bone scan? This would show if there are any problems with joints bones cartalidge, thinning bones..Has she been checked for low iron?Sometimes Prednisone is too much steriod for some people, I think its a good idea if they try something different. Prednisone can in some people cause hair loss and really dry skin..I wish you lots of luck and hope that things have gotten much better since you posted your concerns..Becca318
    Becca318 13 Replies Flag this Response
  • Here are causes of iron deficiency: Not enough thru the diet This is most common in children, so I would think this is not your moms problem. Failure to absorb iron thru the intestineThis could be it. Has she been tested for small intestine issues. Celiac disease is quite common and often doctors will forget to test for it.Increased utilizationFor example pregnancy and adolescent growth Atransferrinemia A rare disease you can read more about on wikipedia: http://en.wikipedia.org/wiki/AtransferrinemiaFailure to utilize (lead poisoning, chronic diseases)This is most likely what the doctors are looking at. Unfortunatly it can take a long time do diagnose chronic diseases. Blood lossMost likely not your moms problem.
    Anonymous 42789 Replies Flag this Response
  • Okay, first of all your mother isn't dying. Autoimmune hemolytic anemia in of itself isn't considered life-threatening. Let's talk about the disorder for a moment and diagnostic testing that is available. I'm presuming that they've conducted a Coomb's test, which essentially identifies the presence of autoantibodies on the RBCs. What needs to be determined, if not already evaluated, is whether she has warm antibody hemolytic anemia or cold agglutinin disease. More specifically where cold agglutinin disease is concerned, is whether it is something called Donath-Landsteiner syndrome, which causes hemolytic anemia as a consequence of exposure to cold and very often occurs subsequent to some type of non-specific viral illness, regardless of whether mild or brief in nature. I would, however, suspect your mother's variant to be warm antibody anemia because she is at the right age and sex for onset of the idiopathic variant. Tests should be performed as a precaution to rule out syphilis and whether the anemia could be the result of an underlying leukemia. It is not likely, but these need to be ruled out nevertheless. Steroid treatment is the mainstay of first-line therapy for this type of anemia, but splenectomy can be performed if she is not responsive to steroids. Although, based upon your posting, it does appear that she is responding positively to treatment. IgG immunotherapy has shown results as well, depending upon the specific nature of the anemia. Again, this type of anemia can result from viral exposure as well, most predominantly by parvovirus B19. Testing needs to continue in search of the underlying cause if it exists, otherwise ruling it as idiopathic in nature. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • While I agree your mom needs further testing and a proper diagnosis, I would like to suggest trying a holistic approach to her symptoms. A good naturopathic doc or Oriental Medical practitioner may be able to shed light on her condition. I am a Doctor of Oriental Medicine and think this form of medicine would be helpful. I hope your mom gets some answers. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Use caution where people are referring to themselves as "doctors" on this site and you need to be aware that these persons are collectively known as charasmatic practitioners. They are not licensed allopathic medical doctors and do not undergo traditional clinical training. In most cases, these persons are individuals who were unable to achieve the necessary merits to be accepted by an allopathic medical school and alternatively relegated themselves to holistic and naturopathic practices. The person responding to your inquiry has no knowledge of the underlying factors associated with the condition your mother has and very often these practitioners work to convince sufferers that herbs, teas, colon cleansing and other quackery will result in a curative effect upon any illness named. Stick with your doctors and continue to use a sound, logical approach to discerning the cause. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • Thank you everybody for your responses. My mom was hospitalized with a pneumonia and this is from the suppression of her immune system, so now she's on antibiotics and should be released soon. As for her original symptoms it isnt from cell phone use my mom hardly uses her phone (when she even has it on!) Coming from a background where people have used herbs for centuries to treat illnesses I am open to an holistic approach. We have already consulted with an Oriental "specialist" who has indicated she has a Vitamin D Deficiency. We have addressed this and she has not seen a difference. I am also very wary of ppl who are just looking to exploit desperate sick persons so Cottle u have nothing to be worried about in this case:) Also thank you for all the other information. I will be asking her doctors about the different conditions you suggested and inquire what tests have been done. Knowledge is power aand now I know at least some of the questions I can ask, I feel a little better. I think I also need to let you know that she was in the Caribbean for the onset of her illness and so it couldnt be the cold disease. I am just looking for some sort of explanation as to why this just suddenly developed and concerned that the treatment of steroids was just something to treat her symptoms and not the original problem. It has also masked her original symptoms and we've been told by her rheumatologist that she needs her off the prednisone to accurately diagnose or rule out other diseases but her original doctors refused to do that. We have since switched and waiting to see if this new drug can allow other tests to be done. once again thanks to everybody!!! JCOttleMD I'd appreciate any other suggestions you might have!
    Valerieetal 2 Replies Flag this Response
  • Thank you everybody for your responses. My mom was hospitalized with a pneumonia and this is from the suppression of her immune system, so now she's on antibiotics and should be released soon. As for her original symptoms it isnt from cell phone use my mom hardly uses her phone (when she even has it on!) Coming from a background where people have used herbs for centuries to treat illnesses I am open to an holistic approach. We have already consulted with an Oriental "specialist" who has indicated she has a Vitamin D Deficiency. We have addressed this and she has not seen a difference. I am also very wary of ppl who are just looking to exploit desperate sick persons so Cottle u have nothing to be worried about in this case:) Also thank you for all the other information. I will be asking her doctors about the different conditions you suggested and inquire what tests have been done. Knowledge is power aand now I know at least some of the questions I can ask, I feel a little better. I think I also need to let you know that she was in the Caribbean for the onset of her illness and so it couldnt be the cold disease. I am just looking for some sort of explanation as to why this just suddenly developed and concerned that the treatment of steroids was just something to treat her symptoms and not the original problem. It has also masked her original symptoms and we've been told by her rheumatologist that she needs her off the prednisone to accurately diagnose or rule out other diseases but her original doctors refused to do that. We have since switched and waiting to see if this new drug can allow other tests to be done. once again thanks to everybody!!! JCOttleMD I'd appreciate any other suggestions you might have! Did her symptoms suddenly appear after her trip to the Caribbean? If so has she seen an infectious disease specialist? How are her stools (and NO, I will not recommend she do a colon cleanse and I am not a quack)...does she have any digestive problems at all? What antibiotic is she taking? Are her respiratory symptoms improving? She would benefit from a good quality probiotic to help rebuild her intestinal flora. I am glad you are open to holistic options and yes I agree with Dr. Cottle that you need to make informed decisions. I don't agree with his flippant disregard to CAM medicine, however. And I thoroughly resent the insinuation that I am a quack and out to prey on people. I am an Oriental medical practitioner and have helped hundreds of people at my clinic and charge very little for the priviledge (I also give free treatments to veterans). Best wishesDOM
    acuann 3080 Replies Flag this Response
  • If you have any lab data that you can post, it would help me see what tests have been performed and generally what her status was at the time of the tests. If you elect to do so, please take care in making certain to redact all personal identifying information and also know that this is naturally a public forum, so even though it's entirely anonymous, the posting of any information from her patient records would in some sense violate federal rights regarding privacy. So you would need to make certain that your mother is aware of any information of this nature posted for evaluation purposes. You may alternatively create an anonymous email through one of the free email services and post it here. I will respond with a formal email that can be used to forward diagnostic test data if you wish to keep such information more private. It's entirely your choice. The main concern is to make certain that the anemia is not due to an underlying condition which has not been identified through testing. Once that has been determined, then exclusionary considerations such as warm antibody autoimmune anemia can be made. Best regards, J Cottle MD
    JCottleMD 580 Replies Flag this Response
  • Yes, definitely see an infectious disease specialist. But also consider genetic issues, like thalassemia. Get her tested for celiac disease, which can cause severe anemia and hair loss in some poeple.
    aquila 1263 Replies Flag this Response
  • Dr Cottle, i will gather as many test results possible and forward to you; thank you for the confidentiality concern. i will get back to you within a week.thanks again!i will also ask that the two tests suggested by another member on this blog be done i.e. the celliac and the other one.Thanks again folks!!!
    Valerieetal 2 Replies Flag this Response
  • true dr's look out after u also.. wot ur going thru is so traumatic ..so far concieved. but we r here for u also.. find and listen to one dr that hears and listens to u.. moreso for u and the one u care for..esp for those that r personal careers. and also it is more heartenly harder to deal with those that r the most closest to face the hardest of all issues.. times r so tough and hard dealing with love ones . in any situation.and there symtoms r very varied.. it also puts stain on many angles never tested before.in the family. remember its not theres or ur fault.. ever.. the toughest part. is the ones that get hurt..r the ones closest to .. remember u not alone. and a dr can only say or do so much..but i will always i send my love to u and all.. god blesses b with u all always. love from mark. aftercare is an ultmost..also..i hope time will carry there always..love
    Anonymous 42789 Replies
    • December 26, 2009
    • 01:23 PM
    • 0
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  • it is hard..not..we r there too help.my life is hard..but not wot ur induring. giving stats is one thing..but telling wot is the ulitmate extreme.giving circamstances. hope is method of many and i wish u all . time is a time also. to and frow .soz i mixed some word.. i................ did it to help myslef in a lost. for some dr.. its is so ******n em...esp.. medical. social. inter.. enviro. pylica. and many other reasons. but we choose to save lives.. in accordan..... we r many faces... but we choose ..to wot and y.. we do ..all always when can and when we cant we do our best ..and not we do it better. and if not we try even harder the nextwe always want the best ..so u .. i will deliver..always .. ur dr..will try.with love..soz. got inhouse hack.. .best b on my server . got it nutro..
    Anonymous 42789 Replies
    • December 26, 2009
    • 01:51 PM
    • 0
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  • Yes, definitely see an infectious disease specialist. But also consider genetic issues, like thalassemia. Get her tested for celiac disease, which can cause severe anemia and hair loss in some poeple. YES! Get her tested for Celiac, I have it and I was sick for 2 years and didnt know what was wrong with me, have her get a scope done through a gastro doctor or have the blood tests at least ran. Malobsorption of vitamins due to Celiac can cause MANY issues! 3 weeks after stopping Gluten I was a whole new person!!!!!! Also, check food allergies through a ENT specialist too!
    stacky 52 Replies
    • December 27, 2009
    • 10:35 PM
    • 0
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