Hello everyone. I'd like to share with you a little about my mother. I'm posting this here because though the doctors have given her an idea of what she has, they honestly do not know what she has. They call her "the mystery."
Anyways, I'll be 30 in January. A few months after I was born my Mom became very, very ill with some unknown illness. The doctors then didn't know what she had, so because they didn't believe she was sick, they stuck her in a mental hospital. I'm not sure what else the doctors did because she became so afraid of doctors she didn't go back to one for 20 years.
When I was growing up, I remember the extreme pain my Mom was in. She would scream for hours on end from all the pain. When I was 19, she got a black hole about the size of a pencil point on the bottom of her right foot. It grew to about quarter size. Since then she has had sores that would never heal-- and no, she is NOT diabetic. It took this sore seven years to heal. Meanwhile, Mom still had the extreme pains. But by now her body started to literally come apart. The doctors finally suggested "Neuropathy" and "Fibromyalgia" but were not 100% sure. Last year Mom had her right leg amputated. Her leg on the inside had decomposed. Her skin sheds in a second-- if she washes it too hard, or brushes up against something, it'll fall off her body. Her body is decomposing on the inside AND outside-- and never heals. She has also had several small strokes. She is now losing control of her arms and left side. And still, the doctors do not know what to do. I just hope someone someday will figure something out.
WOW,has she ever been seen by an infectious disease specialist at any sort of a university teaching type hospital?just what type of docs/specialists has she seen?this almost sounds like some sort of necrotising type of disease,kind of like necrotising facsiaitis(?sp).skin necrotitis is where the skin just dies off?it would appear from what you mentioned about that hole in her foot that wouldn't heal that she rather obviously has a definite vascular problem with the circulation,at least down to the foot area anyways,which would indicate possible neuopathy given the level of pain she has been experiencing.
i just cannot believe that she has not gotten some sort of more aggresive type treatment for this severe a condition.she should also be seeing a really good pain management doc who could help her sooo much with the badly neded pain control.there are good meds out there for treating neuropathic type pain and any other severe chronic pain she may be suffering from.
like i mentioned above,getting her to a university teaching type of hospital would really be her best bet i think.they just have so many different specialists availiable who really do know their stuff.when my son became severely ill with liver failure and also had some sort of really bad infection going on within his bile ducts,geez,we had actual 'teams" of docs coming in and out of his room like all day long.we had our GI team,our kidney team our infectious disease team,and believe me, that list went on and on.all of these teams were also consulting with one another and discussing ALL options since they were all right there and availiable to call on at a moments notice.
the thing is,in these types of hospitals,they are just so much more on top of things since they also do alot of research at these types of facilitys.i really DO think your moms best bet here would be to get her admitted and let them take over doing the testing she needs to really find out just what in gods name has been slowly taking over her body.
i am so sorry your mom has had to endure all of this ongoing crap.i know it can't be easy for you having to watch her either.hopefully if you can get her to the right place,they can find out the real cause of her medical problems.but she most definitely NEEDS to see a really good pain doc at a pain clinic.my pain clinic literally saved my life.they just have so many different therepys and use many different types of meds to try and really help to control even the worst of the worst types of pain.unfortunetly because of the mess my body is in,i was one of those worst cases.they really can helpyour mom too.
i wish you lots of luck here that she can get Dxed and properly treated.please keep us posted as to how she is doing.FB
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Actually for the past ten years she's been under the care of Emory University, although her nurse that comes to her house is trying to get her into the pain clinic. And Mom has seen all sorts of doctors, but her main doc she is thinking its time to switch, because Mom doesn't think her doc can do much more for her.
I think it's up to your mother's GP to see that she gets to the right Doctor that can help her.This has went on much longer that it ever should have.
You and your mom are both in my thoughts and prayers.