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petoskey6
@petoskey6

Posts: 1
Joined: Apr 03, 2016

My sister is undiagnosed and I'm scared

Posted by @petoskey6, Apr 3, 2016

Hi my name is Michelle my sister Diane has been at the University Of Michigan for five weeks now the doctors can not figure out a diagnosis she felt tired and legs and arms were weak since December five weeks ago she collasped and is paralized from the hips down and can not contol her functions below and is in briefs since then no improvement.. Im scared to death for her I cant sleep and this is consuming me any reccomendations or other treatments I should know about ?? She is getting Chemo once a month she had a five day steroid treatment and also having the white blood cells flushed from her blood are they doing everything she needs????

REPLY

Hi @petoskey6, welcome to Connect.
How frightening this must be for both you and your sister. Without a diagnosis, it must have been difficult to choose which group to post your message to. Do the doctors think her condition is autoimmune related?

Hi Colleen, just wondering if there any physician’s that reads and respond or at least give thought to all the people that suffer like this family ? One of the main conversations from doctors for myself and other family ” it is all emotional and you are causing your own illness.” Four dermatologist and gastro told my 26 yr old daughter and us that she was harming herself, because she had so many sores , arms face butt legs, finally a biopsy and blood work diagnoised PG and Mercer from Chrons which she had suffered for over a year.
A doctor should never say it is in your head. What happened to “do no harm”. I am really not an angry person just sad of where our medical care has come to where we are. I hope I can say prayers going out.

@mswanda

Hi Colleen, just wondering if there any physician’s that reads and respond or at least give thought to all the people that suffer like this family ? One of the main conversations from doctors for myself and other family ” it is all emotional and you are causing your own illness.” Four dermatologist and gastro told my 26 yr old daughter and us that she was harming herself, because she had so many sores , arms face butt legs, finally a biopsy and blood work diagnoised PG and Mercer from Chrons which she had suffered for over a year.
A doctor should never say it is in your head. What happened to “do no harm”. I am really not an angry person just sad of where our medical care has come to where we are. I hope I can say prayers going out.

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Good question @mswanda.
Connect is a place where you can find people like you, with similar questions and concerns. As part of the online community, you can talk with others and share your health challenges, experiences and wellness goals. Sometimes it can simply help to know that you’re not alone. I bet your message was helpful to Michelle despite the medical situations of your family members being very different. It is so hard to watch a family member suffer and to not be able to do anything.

A diagnosis from a physician is impossible online. However, people can request for a Mayo Clinic department/physician to review their case by contacting us here: http://mayocl.in/1mtmR63 Additionally our physicians and other health care providers host webinars on a variety of topics and answer questions live or following the presentation. However, here again, a personal diagnosis cannot be made without a complete medical history and personal consultation.

How awful it must have been to be told that your daughter’s suffering was all in her head. Did you have to insist on a biopsy and blood tests? Thank goodness you finally have a diagnosis and can seek treatment. How is your daughter doing now?

@mswanda

Hi Colleen, just wondering if there any physician’s that reads and respond or at least give thought to all the people that suffer like this family ? One of the main conversations from doctors for myself and other family ” it is all emotional and you are causing your own illness.” Four dermatologist and gastro told my 26 yr old daughter and us that she was harming herself, because she had so many sores , arms face butt legs, finally a biopsy and blood work diagnoised PG and Mercer from Chrons which she had suffered for over a year.
A doctor should never say it is in your head. What happened to “do no harm”. I am really not an angry person just sad of where our medical care has come to where we are. I hope I can say prayers going out.

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Thank you so much Colleen, sorry, take your time reading or just file. It
is just hard to stop writing. I am 65 and have had autoimmune since 22, so
there have still been great gifts
No she was diagnosed with crohns in 2005. Then vasculitis, then RA,, lupus.
I don’t think it is ever just one. Nov 2008 she was blessed with a perfect
baby girl. For nine months she was in remission. She has ostenecrosis with
bone death in left foot and has lost back teeth in the last year.
She received Full Social Security Benefits at 26. Her case manager worked
so hard and saved her life emotionally from all the doctors, family and
friends that just thought it was drugs, alcohol, lifestyle etc. It Never
was.
She went from Miss Teen Alabama, working pagents for Donald Trump.
World Champion Baton , Miss Majorette of Alabama, University of Alabama
Crimsonette (majorette) and Miami Dolphin NFL Cheerleader.
Then in a blink she was on a feeding tube and months of hospital. Yes I
fired my share of doctors. Dr. David McClain and Dr Treason were the 2
doctors saved her life but we moved and it has not been the same.
So she has been working on her degree in integrative medicine, nutrition,
and natural healing . I just know she will make a difference. She already
has for her and me.
Just one last thing. My mother, her grandmother, died 3 yes ago from
complications of crohns,
My son, her brother, died at 37 , from a heart emulsion from respiratory
infection, 12 yes after being released from ER that documented slow
respertory from drugs!. Again no truth. But the assumptions will never get
my Son back to me and his babies.

Like everyone on this and other groups, I could write a book. A few weeks
ago my 1st post was my Sarcoid in 1973, my baby boy was 6 months old and
because my diagnosis was skin, lungs and more in 1973 I was the only white
female that the university of Alabama Birmingham Alabama had ever treated.
Therefore they said 6 months to live or remission. Weeks in the hospital
because a teaching hospital, treatment was only steroid and
antidepressants. Looking back I spent all of those weeks and months with
doctors of all fields testing and absorbing and I don’t think we are
anymore knowledgable in the medical field.

@mswanda, first my apologies for taking a couple of days to respond to your post. As you have witnessed first-hand, Connect has been very busy, and I’ve been welcoming newcomers and connecting people. So my first word of reply are to say THANK YOU for all the messages you’ve posted, helping to welcome newcomers and take part in a number of the discussions.

I remain awestruck at your strength through all the illness and loss that you have faced and continue to deal with, and really appreciate that you use your experiences to help others, to ask questions and to help problem-solve.

@colleenyoung

@mswanda, first my apologies for taking a couple of days to respond to your post. As you have witnessed first-hand, Connect has been very busy, and I’ve been welcoming newcomers and connecting people. So my first word of reply are to say THANK YOU for all the messages you’ve posted, helping to welcome newcomers and take part in a number of the discussions.

I remain awestruck at your strength through all the illness and loss that you have faced and continue to deal with, and really appreciate that you use your experiences to help others, to ask questions and to help problem-solve.

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Thank you. I feel like if I start a reply it turns to a book so if I get of
of line please let me know. So many of us have been dealing with the immune
system just not right and there has been so much in my family on my mom’s
side that like everyone I think, we suffer, we miss out, misunderstand,
often losing our family and finances because even family does not
understand, must less employers and government and I will say gently
medical community. So many medical care can’t fix, knows nothing about
problems that have no proof and can’t be put in a box so insurance will pay.
So sorry here I go. I am so glad that people like you have made the social
media groups, often the best care we get.
Bless you

You’re not out of line at all @mswanda. If you can’t talk about these things here, where can you? Health is more than medical appointments, if touches everything in our lives from relationships to finances.

I’m a bit concerned that we’ve hijacked @petoskey6‘s original post however. Let’s check in.

@petoskey6, how is your sister doing?
If you would like to consider a second opinion, please feel free to contact Mayo Clinic here: http://mayocl.in/1mtmR6

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