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Doctor for complex diagnosis?

A friend's 29-year-old daughter has been suffering from severely disabling symptoms in the past year, including disautonomia (dizziness, disorientation, fainting, nausea, incoherence) and hypotension ( blood pressure when rushed to the ER this week was 70/40).  She has both juvenile diabetes and celiac disease, and takes a number of medications to treat varying symptoms, prescribed by numerous specialists--neurologist, endocrinologist, cardiologist, gastroenterologist, ObGyn, celiac and diabetes experts. Every part of her body has a doctor!    But none so far seem able to "put things together" and offer a cause or treatment for her current symptoms.  With her diabetes and celiac, her case is very complex.

Who can the family go to that can help sort out what is actually causing this problem (neuropathy?  a medication? virus? other?), and what to do about it?  Is there some doctor or clinic specializing in difficult diagnoses?  They live in the New York area (Westchester).

Thank you for any suggestions.
wlew
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Avatar universal
My daughter was just diagnosed with POTS yesterday after months of varying symptoms and seeing different doctors.  When we realized she was having tachycardia as well as low blood pressure at times we went to a Cardiologist who scheduled a Tilt Table Test which indicated POTS.  You might check to see if they have done this test as it can rule out POTS.
I know how frustrating it is watching a loved one go through these symptoms without a diganosis.  
Good luck!
:)
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Avatar universal
My first thought was B12. If low, can cause all her symptoms. Has a she seen a neurologist? What does he say? Other endocrine problems can cause her symptoms too, like thyroid, but I'm thinking it may be parathyroid. If your not familiar with that gland, it not at all related to the thyroid except for the fact they're right next to each other. Parathyroid regulates calcium levels in the body. Hyperparathyroidism is known as the disease of "bones, moans, groan, and psychic overtones." Even if her calcium levels are normal, get a test specifically for the parathyroid. Can also have a scan to see if there is a tumor. You may want to contact "medicmommy" on here. Think this was her problem and she is very helpful and knowledgeable.

I'm 36 and been having symptoms for years that are still undx to date. I feel for you. I know what she's going through. There really isn't a clinic know for treating people like us except maybe for the Mayo Clinic. They are known for dealing with the most complex and difficult to diagnose.  Otherwise the best thing for her would be to go to a teaching university if you have one near by.

Best of luck...keep us posted.
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Avatar universal
Thanks so much, Soonerman.   I'll tell the family about your comments.   You've mentioned a few things that maybe they haven't considered yet, and it's a good time to let them know because Stacy is still in the hospital being "worked up."

You seem to be very knowledgable, and I appreciate your help.  

wlew

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Avatar universal
Sorry I don't know of any doctors that you could turn to, but hopefully someone will be able to help you with that.  

I do know that Celiacs commonly are deficient in vitamins and nutrients (mainly B, D, and K).  Low B12 and other vitamins/nutrients can cause a number of symptoms.  I hope her levels have been checked and been treated if needed.  Also I wonder if she has been checked for other food allergies/intollerances (IgG and IgE allergies) since it is common in celiacs; these can wreak havok on the body.

Also, you may look into candida/yeast overgrowth can cause alot of those symptoms; just google it and also "The Yeast Connection" is a good book on the subject.  I would assume she has taken numerous antibiotics, and you said she took/takes birth control; these are good opportunties for the candida to spread and grow, causing numerous and dramatic health effects.
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Avatar universal
Thanks so much for your quick reply!  Any help is appreciated.   To answer your questions--this is a young woman who has always been extremely conscientious about her health, and even moreso since it has become so fragile.   Her diabetes and sugar levels are as controlled as they can be, considering she must take numerous medications which sometimes throw things off.  I don't know all the meds.  But I believe she takes Lyrica (or something like it) for neuropathy in her foot.  She was on birth control pills to prevent the ovarian cysts she was developing, and those were stopped recently to see if that helps relieve the current symptoms.

In any case,  she is always on top of the situation and makes appropriate adjustments when necessary, fully realizing the consequences if she ever lost control.  She is on an insulin pump, as well.   And when she is too ill to think straight, which is very often lately, her parents step in to take care of her, or take her to a hospital--where they do the usual tests, usually find normal results, give her  IV electrolytes to stabilize her, and then discharge her.  It's the same story over and over.  The patient is clinically very ill, but no one can figure out why.  And yes, a psychiatrist has been consulted.   But this is not being caused by any emotional issue.   (She is depressed, however, because of the medical problems.)

As for her celiac, she eats only gluten free food and that appears to be under control (she is under the care of a top celiac doctor at Columbia Presbyterian Hospital in New York City).  

The question remains, what is causing these unrelenting symptoms?  Could it be the diabetes, some form of neuropathy affecting her nerves, brain or vascular system?  Could it be a virus?   Could it be a problem with one or more of the drugs she takes?   Could it be an unexplained autonomic nervous system issue, such as vasovagal syncope or POTS?  

And the question remains, who can she go to that will figure this out??
wlew




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Avatar universal
I guess I don't understand, you know she has juvenile diabetes and celiac disease.  Both of those can cause a variety of symptoms including the ones you listed.  Is she completely gluten-free?  Does she control her blood sugar with diet, exercise, and/or insulin?  

If she continues to eat gluten and sugar then she will continue to suffer symptoms of those diseases.  Also untreated Celiacs can lead to other food intollerances/allergies and leaky gut.
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