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briarrose

Woman Needs Help No Diagnosis & Time Running Out

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Hey guys

Been a very long time since I've posted here. (I know this is going to be overwhelming for some to read, it was for me.) I tried to break some of it down.

I recently saw this story on the news and am passing it on to any of you that might be able to help. Check it out and let me know what you think. So many symptoms, I'm sure dysautonomia but caused by what??? Paralysis, edema, inability to void, etc.

http://www.8newsnow.com/story/13481444/henderson-womans-plea-for-help-goes-viral

You can see her complete saga but think you have to join this free website to read it.

http://www.carepages.com/carepages/KristieTunick/patient

Please kindly read this story of Las Vegas women Kristie Tunick who experiences life with a body that cannot touch hard surfaces or it paralyzes. At minimum take a moment to at least watch her segment that aired on 20/20 in August 2009. ABC?s 20/20 producers have not followed up on her story and it is so upsetting because she is fighting for her life right now. The segment left off with images of her dream wedding that is planned for her future but instead she is lying in her bed fighting and waiting for a doctor that can save her life.

http://abcnews.go.com/Video/playerindex?id=8281604

February 2010

Dear Producers or Doctors,

Kristie Tunick and her medical mystery was featured on ABC's 20/20 last fall. Her "love-story" about her once normal life with her fianc? Brian, and her life as a pre-med student turned medical mystery in which physicians thought she had Stiff Person Syndrome. She was medivaced in August 2009 to the Cleveland Clinic to get help for Kristie as the doctors were confident they could ?have her walking out of here in 2-3 months?. However, doctors are not convinced she has SPS and have not been able to diagnose her progressing illness. Kristie's condition is extremely complex because it consists of a rare neuromuscular disease and a autoimmune disease as well as possible caner. As well as many other possible conditions.

At this time Kristie is critical and isn't able to get help from a doctor. Her doctor from Cleveland Clinic where she is no longer at is trying to get her to John Hopkins. Mayo Clinic didn't feel they could help in MN and the rare undiagnosed disease program at the NIH turned Kristie down. How does that happen to someone who was on a segment from 20/20 that said "5 Reasons Why to Seek Neurological Help." Yet Kristie can't get any of the top doctors to help her, which is an example of why the medical system needs improvement. Unfortunately, Kristie will have to wait again as she has so many times to find out is she gets into John Hopkins, where Kristie needs to go to stay alive. As she has nowhere else to go at this time. And Kristie is getting worse by the day.

Early diagnosis included

In 2006 Kristie had her gallbladder removed because she couldn?t stop vomiting, had difficulty swallowing, and feeling of satiety. She later found out at Mayo Clinic, Scottsdale it was from gastroparesis. Kristie has severe gastroparesis, neurocardiogenic syncope, autonomic neuropathy, non epileptic seizures (grand and petite mal) caused by autonomic dysfunction they believe. This all occured before November 2007 when neurological symptoms started. Now Kristie has been diagnosed with small fiber neuropathy, chronic pancytopenia and much more that they do not know what the cause is or how to treat it which makes it dangerous for Kristie. They know she has a rare neurological disease, a possible autoimmune disease which would explain the swelling in her tissues, her Oncolkogist thinks there could be cancer hiding and Kristie has a degenerative disease of the Vertebrae called Sherman?s disease. It is too much for one person too have to endure.

Thx

steph

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Any chance whether you know if this poor lady has been evaluated for possible Multiple Endocrine Neoplasia?!

MEN1 is a very rare condition that can affect men or women at any age. Although it tends to be an inherited condition, known as familial MEN1, it can sometimes occur in people who do not have any family members diagnosed with it and it is then known as sporadic MEN1.

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Guest tearose

welcome home briar!

My heart is aching for her and her fianc?e and family.

It is such a horrible ordeal and I will keep her in my prayers.

It is hopeful that at least there is someone at Johns Hopkins that is willing to help her.

Thank you for sharing this with us.

best regards,

tearose

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NIH has an undiagnosed disease program. It's pretty new and doesn't have a lot of resources.

http://rarediseases.info.nih.gov/Resources.aspx?PageID=31

I think THIS is the program that turned her down :( What a tragic story!!!

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I could be wrong but if you arrive at an ER acutely ill do not some hospitals take on the obligation to care for you no matter your ability to pay etc.? Then once you are in the system - couldn't the system itself fight for you (because you are too sick) and arrange for transfer, transport to an accepting hospital and physician? Most likely the patient's life would be supported with known means until a hospital accepted her and gave her a bed number. This is not to say that the accepting hospital would have the answers - we are perhaps guessing with very educated guesses in entirely unknown territory ... her case would beneifit others in the future most likely as well as helping her in the now. There are more than one Mayo Clinics and each has fine clinicians - and they all network and communicate like crazy. Do you know who she saw in Scottsdale? Which neurologist? Who specifically has reportedly "given up on her"? Is it documented that they 'gave up' or is there more to it? Does the patient have the insurance needed to continue costly workups and treatment? Was there a reason why a rare disease program would refuse a patient? Has she seen Dr. Henderson in Bethesda MD? Does he know of her? Maybe you can make physicians aware by writing explicit emails to the physicians themselves? There is always more doors to knock on ... do not give up. Call up Oprah's people.... Call the Discovery Channel.... Keep on going until you can't

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I saw this story when it was first on the TV. It is so moving and touching and her fiancee is such a good, loving and wonderful person. She is so fortunate to have him with her and for him to be so loyal to her. That must give her comfort and security. My husband says the same thing, he rather be with me than without me even with all the health issues. That kind of person is truly rare in such a selfish world that we live in these days.

It does seem that there are autoimmune issues involved. Have they tried plasmapherisis or something like that? She looks like possibly Guillium Barre which can affect your muscles, breathing and autonomic system. Did she have a flu shot - that can give this to you. My father has had it. It is diagnosised with a spinal tap and the fluid can show either Guillium Barre or MS. Then they have to determine which one. It is autoimmune related. It does affect the mylin sheath around the nerves. Some people become completely paralyzed with it. Have they checked her for some type of parasite that could be attacking her? Arsenic - can be gotten from drinking water. I had this high one time and that was the cause. I lowered it by eating allot of clinatro. They could try chelation and rid her of the heavy metals that could have accumulated - if she's strong enough. Mercury from dental fillings can also cause some of these issues. Over growth of yeast - candida - start using allot of coconut oil - eating by the tablespoon 3 a day - at least cook with it. That's all that comes to mind right now.

I'm hoping for her to find some relief. Has she tried fish oil, ginger and turmeric for the pain? Also enzymes are good for pain and digestion issues.

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I've been thinking about this poor woman too. I agree with Issie, there are certainly autonomic issues AND more. Some (much) of what she is going through reminds me of what one of our members recently went through. On top of her chronic autonomic stuff, she was DXed with Stiff Person's Syndrome and had a history of a previous occurrence of Guillaine Barre Syndrome. She also had a horrible time finding help and was frequently misDxed, constantly transferred BUT ultimately did find help. I will PM her and ask for her input. She certainly knows all of the top docs- neurologists, etc. I think it was a combo of plasmapharesis and IVIG (and a med regimen) that ultimately provided the most relief. I hope we hear from her soon... :rolleyes:

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Thank you everyone for your responses.

I know first hand that when you become ill, it can be a lonely & frustrating place. Knowing where I was at one time, makes me what to pay attention to others who need help or advocators.

Tearose, it?s been a long time, thanks for your welcome.

I will be cutting & pasting all of your suggestions to Kristi. Hopefully something pans out for her.

As for going to the ED. I worked in an emergency room for several years & their job is to make sure that you aren?t dying. They can give you a 1 time referral to follow up with someone but beyond that no body is really that obligated unless a doctor take you on.

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Hi Briarrose-

Erikainorlando is the member I was referring to who had some similar symptoms. If you look up her last half dozen posts (via the member page) you will gain a wealth of info re. her symptoms and eventual effective treatment. I didn't know how to link it here :( Sorry.

She hasn't responded to my PM- I hope because she is too healthy to bother with us :rolleyes:

All the best to this brave young woman-

Julie

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Guest tearose

Has anything turned up helpful for her yet steph?

I don't understand why and how specialized critical care centers would not be able to help.

Is her PCP advocating for her?

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