Discussions By Condition: Medical Stories

My mother needs help for an undiagnosed disease!!!

Posted In: Medical Stories 6 Replies
  • Posted By: Anonymous
  • January 26, 2008
  • 10:58 PM

Im a 24 year old daughter desperate to help my mom get a descent doctor to actually help her. Her symptoms started about 4 years ago.. back pain that surged down her arms and legs. She was put on Oxycontin for that. THey did a bone scan and found a "hot spot" on the TL spine...wanted to biopsy it, but for some unknown reason decided against it. Pain has gotten increasingly worse.. she now is on Methadone..has tried Fentanyl patches. Nothing really helps.. but she has had severe abdominal swelling and bilateral leg edema for about 6 months now. She is very sedate and seems almost zombie-like at times,.. even when she hasnt taken her Methadone. She has had an angiogram of her legs recently. THe doctor said she has perfect arteries in her legs. She went to Wakemed for a cardiologist, was found to have some cardiac dysfuntion disease but not severe enough to cause her symptoms. SHe is on Lasix...so much that the kidney specialist had to take her down on that. She is on KCL pills twice a day, but we just found her K level is still incredibly low. Her Vitamin D level should be around 30-100, but is 9!!! Many things can cause this but noone knows. She has seen a rheumatologist and he doesnt know what else to do. She has seen neurologists,.. with no luck. She is on Cymbalta and has tried Neurontin for nerve pain. For all we know she could be dying and noone knows about it. We began taking her to the hospital several times and they found nothing. We wanted her to be admitted but her general doctor would not allow it. She has been told that she may have to live with the swelling!!! But why???? It may be cancer and we have no clue!!! I dont know what else to do.. I think she has some weird disease causing all this but noone will test her for anything but the obvious!! OH, and she has enlarged lymph nodes (inguinal) and one was biopsied..and was simply reactive. We are at a loss and need some serious help.

Reply Flag this Discussion

6 Replies:

  • Did she at any time take fentanyl along with the cymbalta? How long was she on methadone when she started to get the swelling symptoms. Swelling of the hands/legs/feet is a serious side effect of the methadone. Adding lasix to the mix is very dangerous IMO as the lasix also interacts with the methadone. I cannot stress this enough - DOCTORS DON'T LOOK AT SIDE EFFECTS OF DRUGS AND DRUG INTERACTIONS:confused: ...They just don't usually take the time. I have horror stories my patients and I have personally experienced. Please look up ALL the drugs your mom is currently taking on www.drugs.com - click on the drug interactions checker and type in the names. Please do this so you will be informed. Your mom has been on some insanely heavy meds! Her liver is most likely very toxic. I pray she does not drink alcohol - this is a deadly combo. She sounds like she may also have some autoimmune dysfunction causing pain and inflammation. Please consider trying a more holistic approach: acupuncture and Oriental medicine may be very helpful and is much less toxic than her current meds she is on. Pain is helped brilliantly by acupuncture - try it it works! Is her swelling causing her skin to "pit" or indent when you press on her ankles? If so, then she needs some kidney function tests (sounds like she needs this anyway)... In the meanwhile a good natural diuretic includes fresh parsley cooked as a tea - boil a bunch of fresh parsley and steep for 20 minutes. Easy, cheap, safe and effective. Please consider that the drugs your mom has taken are contributing to her current condition. Best wishesDOM
    acuann 3080 Replies
    • January 27, 2008
    • 02:52 AM
    • 0
    Flag this Response
  • Im a 24 year old daughter desperate to help my mom get a descent doctor to actually help her. Her symptoms started about 4 years ago.. back pain that surged down her arms and legs. She was put on Oxycontin for that. THey did a bone scan and found a "hot spot" on the TL spine...wanted to biopsy it, but for some unknown reason decided against it. Pain has gotten increasingly worse.. she now is on Methadone..has tried Fentanyl patches. Nothing really helps.. but she has had severe abdominal swelling and bilateral leg edema for about 6 months now. She is very sedate and seems almost zombie-like at times,.. even when she hasnt taken her Methadone. She has had an angiogram of her legs recently. THe doctor said she has perfect arteries in her legs. She went to Wakemed for a cardiologist, was found to have some cardiac dysfuntion disease but not severe enough to cause her symptoms. SHe is on Lasix...so much that the kidney specialist had to take her down on that. She is on KCL pills twice a day, but we just found her K level is still incredibly low. Her Vitamin D level should be around 30-100, but is 9!!! Many things can cause this but noone knows. She has seen a rheumatologist and he doesnt know what else to do. She has seen neurologists,.. with no luck. She is on Cymbalta and has tried Neurontin for nerve pain. For all we know she could be dying and noone knows about it. We began taking her to the hospital several times and they found nothing. We wanted her to be admitted but her general doctor would not allow it. She has been told that she may have to live with the swelling!!! But why???? It may be cancer and we have no clue!!! I dont know what else to do.. I think she has some weird disease causing all this but noone will test her for anything but the obvious!! OH, and she has enlarged lymph nodes (inguinal) and one was biopsied..and was simply reactive. We are at a loss and need some serious help.I am very glad that I found this...I was in pain mgmt for a very long time and eventually eneded up on Methadone..(140 mg per day) Zombie is right..I was a person that could NEVER fall asleep in a sitting position but after the Methadone I could now fall out of a chair alseep. Then my legs started to swell and ended up having pits when I would push on them...then I was urinating 6-8 times per night. I found that putting up my legs would make me go to the bathroom more and my leg swelling would go down. I also have a red rash on my left leg where most of the swelling accumulates. I have been to a few doctors and I get the feeling that they know why and they act as if they dont for some reason. I now know that there is someone else going through this. Has she had any other infections? Candida overgrowth? Skin problems? Let me know that you received this.....Thank you, Kyle
    Anonymous 42789 Replies Flag this Response
  • I am very glad that I found this...I was in pain mgmt for a very long time and eventually eneded up on Methadone..(140 mg per day) Zombie is right..I was a person that could NEVER fall asleep in a sitting position but after the Methadone I could now fall out of a chair alseep. Then my legs started to swell and ended up having pits when I would push on them...then I was urinating 6-8 times per night. I found that putting up my legs would make me go to the bathroom more and my leg swelling would go down. I also have a red rash on my left leg where most of the swelling accumulates. I have been to a few doctors and I get the feeling that they know why and they act as if they dont for some reason. I now know that there is someone else going through this. Has she had any other infections? Candida overgrowth? Skin problems? Let me know that you received this.....Thank you, Kyle What other meds are you on?DOM
    acuann 3080 Replies Flag this Response
  • Have her switch doctors. Has she thought about shingles, with chronic pain? Maybe gabepentin or something like that might help if it is a herpes related virus.
    Monsterlove 2921 Replies Flag this Response
  • Im a 24 year old daughter desperate to help my mom get a descent doctor to actually help her. Her symptoms started about 4 years ago.. back pain that surged down her arms and legs. She was put on Oxycontin for that. THey did a bone scan and found a "hot spot" on the TL spine...wanted to biopsy it, but for some unknown reason decided against it. Pain has gotten increasingly worse.. she now is on Methadone..has tried Fentanyl patches. Nothing really helps.. but she has had severe abdominal swelling and bilateral leg edema for about 6 months now. She is very sedate and seems almost zombie-like at times,.. even when she hasnt taken her Methadone. She has had an angiogram of her legs recently. THe doctor said she has perfect arteries in her legs. She went to Wakemed for a cardiologist, was found to have some cardiac dysfuntion disease but not severe enough to cause her symptoms. SHe is on Lasix...so much that the kidney specialist had to take her down on that. She is on KCL pills twice a day, but we just found her K level is still incredibly low. Her Vitamin D level should be around 30-100, but is 9!!! Many things can cause this but noone knows. She has seen a rheumatologist and he doesnt know what else to do. She has seen neurologists,.. with no luck. She is on Cymbalta and has tried Neurontin for nerve pain. For all we know she could be dying and noone knows about it. We began taking her to the hospital several times and they found nothing. We wanted her to be admitted but her general doctor would not allow it. She has been told that she may have to live with the swelling!!! But why???? It may be cancer and we have no clue!!! I dont know what else to do.. I think she has some weird disease causing all this but noone will test her for anything but the obvious!! OH, and she has enlarged lymph nodes (inguinal) and one was biopsied..and was simply reactive. We are at a loss and need some serious help. Hi Bluesupernova, Does she have a lot of additional symtoms that the docs no longer want to hear about? Methadone can cause edema as can other opioids. I reacted more to oxycodone with edema than I did morphine. I took off about 80 pounds of water, half with methylb12 and half with l-carnitine plus a load of cofactors. Lasix can suck down potassium. There are some potassium sparing loop diuretics. There could be more than one thing going on. Methylb12 plus cofactors might help reduce nerve pain from other causes, it did for me, as well as any deficiency causes. I have no idea at all whether it can help or not, but it can't hurt. There is a b12 thread at the top of the list of the menu this post comes off.
    Freddd 3576 Replies Flag this Response
  • It sounds like your mom is a complicated case. I'm so sorry she is in so much discomfort. She is lucky to have you looking out for her.Here are some things that might speed up getting to a diagnosis, since she has seen so many doctors by now:Keep the following running lists handy for any new (or old) doctors seen. Be very succinct- try to keep each list to one page if possible (you might have to go get copies of all her records to put everything together):-One page for her symptoms, as they have evolved- with dates and types of doctors seen-One page for past studies and labs. Give results of all studies and include the normal range values for all labs. Put an asterisk next to all abnormal labs. Give the dates of each lab/study & put them in chronological order-Keep a list of all your mom's medications and when and why she was placed on themYou might want to take your mom to another doctor who is willing to put all of this together. Perhaps an internist at a teaching facility may be able to crack the case- or at least make the appropriate referral to someone who can.Doctors have very limited time. If they have to spend the whole appointment just trying to collect the information you put on the succinct sheets, they will not have as much time to think about her case critically and in an organized fashion. Don't assume that they have access to all her past labs and studies- they may not.I hope you get answers soon.Best Wishes
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.