Topic : When a Family Member Gets Sick

I'm a mother of 2 children and have Diabeties Type 1 and CVS.CVS is a syndrome that is difficult for doctors to diagnose because there is no test to say yes this is what you have.You do every GI test they could possible think of.And without an answer still,some have had unecesary surgeries(galbladder removed to stitching or turning your stomach around so that you cant puke up food.But if you have CVS none of this will work.It's a syndrome That causes a life change for you and every single person around you.You vomit violently,reching,and with pain and nothing but stomach acid comes up.For me I go to the ER every 4-5 weeks and given Thorazine/benedryl combo IV to stop the vomiting.And sleep is one of the best things to do to stop the puking     with meds.Everyones life around you changes.Someone having to take care of your kids,calling into work(which I lost my job,I was in the ER over 10 times in 2005)Before my diagnoses my vomiting attacks would last for 5 days straight.I'm small to begin with so the weight was coming off within hours from puking and by the time I gain some back,I get sick all over again.They just started research in 1993 on adults and had only 40 patients to work with.There are only a few docs that has heard of CVS.It was origionaly diagnosed in children which some grow out of as they grow.For some it disapers for a while(one person for 10 years)then come back out of nowhere.My CVS started when I was pregnant.I'm high risk so I would drive to Stony Brook University(which is a teaching hospital)every week and they never diagnosed me,just chalked it up to morning sickness.And then disapered for almost a year,then came back.Before diagnoses I was hospitalized for 4-5 days vomiting non stop with no  answers when sent home.That lasted for almost a year then I was finally diagnosed and now I'm only in the ER for a few hous.I was very luck to have been diagnosed in 3 years,everyone I have come in contact with who all have CVS were not diagnosed from any where to 5-10 YEARS!! 

Please Dr.Phil help the few of us with this ugly,horible,painful syndrome to get the word out about CVS.There is a web sight just to give you an idea how much we suffer,especialy the children.cvsaonline.org.Please go to community board and read away.Then on the left of that are the Emperic Guidelines for CVS,by DR.Fleisher,who is one of the most knowledgable about CVS.Also DR.Li,Dr.Boles.Most traveled to Dr.Fleisher in Missouri just to get a diagnoses and information on CVS to give their gastro doctor.As far as I know each GI we all go to,only has one CVS patient.There is only one research center and I believe they are still on phase 1.There was a Gastro conference and it was strssed to start diagnosing CVS.Please,Please Dr.Phil help the few of us that suffer to get the word out so others don't have to go as long as most without a diagnoses.The worse part is there are no answers yet as to why this happens and of course no cure! 

Sincerely Sharon Holzman 

I haven't been back to the message boards for this entire month so I just noticed your reply.  Thank you for taking the time to respond.  I'm going to get a copy of the book and read it.  Also, I've been searching the web for a reliable, easily accessible, 24-hour online chat site in the hopes that there would be someone around to vent to when I need it.  I just don't want to be taking my own frustration out on my aunt since it's not even within her control.  Also, I sent an email to Dr. Phil hoping that one of his staff would bring this to his attention, as there doesn't appear to be any specific area on his site that addresses any type of dementia.  As it is such a commonality of the elderly, I'm hoping he'll set up something for the caregivers needing that specific help, or that he or his staff will be able to refer me (us) to a website that will address my (our) need for support and advice. 

As regards senior centers and adult day care, other than tying her to the roof of the car, there appears to be no way to get her to join in on those activities.  She'd prefer to sit home reading the newspaper cover to cover or sitting and watching HGTV for 8 hours than to go to one of those centers.  They're only for "old people" you know.  She's been told by her peers, some who do participate in some senior activities, how much fun they have.  But, her stubbornness and lack of willingness to go out and make friends holds her back.  And, I don't have the energy to fight it. 

Diane 

Two years ago I came down with what I refer to as an attack .... I had never been so sick and I have been through lots and lots of surgeries but of everything I have ever endured this has made me the MOST scared and sick I have ever been. 

My symptoms are (EXTREME intensity of burning, numbness, sensitivity and tingling of my feet) - (EXTREME nausea) and I'm not one who can easily regergitate, so I don't.  I also get this odor and it's the MOST rotteness smell I have ever smelled.  It permeates throughout my entire body including my mouth and I can taste it.  It even seems to  permeate into my bedding or couch or whatever room I'm in but, no one including my husband or friends can smell this odor but me.  I also dehydrate fast like meltingly fast.  My regular doctor says to drink pedialyte and green tea and that should help and I do however, it does not hydrate me fast enough to make me better.  When I get these attacks I lose at least 10 lbs. and am down for 5 to 7 days unless however, I go to the emergency room where they inject an iv with saline solution which helps immediately I can feel the difference in my mouth immediately then they give me phenergran and morphine.  Within a couple hours I am sent home and I'm much better by the next day. 

A wonderful gastroenterologist did an extensive colonoscopy, upper and lower gi's on the assumption that there may be a small obstruction due to all my previous surgeries and he found nothing so, he referred me to an excellent surgeon who is certified by the american board of surgeons he too, ran ultrasounds of my pancreas, gallbladder, aorta, bowel and right kidney and also injected me with a small amount of radiation to trace the gallbladder.  Those tests too came back unremarkable.  He suggested to my regular doctor that I need to have intensive tests done by a neurologist from UCLA because with all my symptoms the pedialyte and green tea are only masking a real problem that he is unable to diagnose and somewhere I am 3rd spacing liquids when I dehydrate because I'm not losing water any other way. 

My regular doctor won't give me the referral and told me that I need a psychiatrist. 

Now what ?  I'm only 46 years old with 2 children in their early 20's a wonderful and loving husband who too is EXTREMELY worried and together we have four children and three grandchildren who need me and I'm not ready to go yet and my husband isn't ready for me to go yet either, he said so.  An autopsy will be a little late in my books. 

I'm so so so so terribly scared.  Nothing like this has ever happened to me like this ever.   I've been sick several times through my lifetime but this, this is JUST NOT RIGHT - SOMETHING IS DEFINITELY WRONG!  

I am looking  and asking for help from anyone who can help my 32 year old daughter (wife and mother of 2 young boys) find an expert physician who can help her get her life back.  At the present time, she is currently on 16+ medications, takes an eight hour lidocaine injection twice a week for pain from an ulner nerve surgery gone wrong, suffers from constant headaches, dizziness, nauseau, low blood pressure and extremely rapid heartbeats resulting in chest pains.  Lisa has been diagnosed with Addison's Disease, POTS (postural orthostatic tachycardia syndrome), and numerous other problems within the last 2 years.  She has been hospitalized 4 times just in the last year, in one case the hospital had a crash cart outside her room for fear she would stop breathing due to some medications she was given.  Several tests have been done which conflicting reports for such things as her Addisons....a group of Mayo physcians say she has POTS and not Addisons, but her local Dr. is sure of the opposite.  Who does one believe?  She has suffered through painful injections at the base of her skull for her headaches, have had biopsies recently taken from her stomach testing for Amyloidosis (which thankfully came back negative), was so critically dehydrated because of nauseauness she required 14 bags of fluids and hospitalized for 12 days....SHE NEEDS TO GET HER LIFE BACK SO SHE CAN ENJOY HER HUSBAND AND TWO SMALL BOYS!!!!  I am so fearful that her future at this point looks like no hope of improving unless  she finds someone who can reevaluate her and hopefully get off some of these medications (which I feel are causing are causing alot of these side effects) and live a happy future.  DR. PHIL PLEASE HELP OUR DAUGHTER!!!  There is alot more going on than I can put in this writing...she has been through sheer HELL in the last several years that no one should ever go through.  And if that is not enough for her stress, her father, my dear husband Bob was diagnosed with terminal Mantle Cell Lymphoma in June 2004 and given 2-4 years!  That too is a major stressor for our whole family, while we sit and watch Lisa lose her beautiful, cheery self.  Not enough  for bad news.....on Dec. 29th of 2005, I had a stroke in my right eye, losing 1/2 of my vision in my only good eye.  How much more can one family take?????  I am okay with my problem, but my husband and my children and grandchildren are my life and I can't take seeing them hurt so much and not knowing what the future holds for my husband and my daughter.  I know that maybe I am rambling on but I don't know who to turn to....I have asked Dr. Phil and Oprah for help, not asking for money, but for some help in finding a special Doctor out there that would help at least my daughter...I know that there is HOPE out there for her but have no where to turn.  If you would be able to see how all this if affecting her 2 boys alone....would bring one to tears....thank God her husband has been there with her through all of this and taking on being not only Dad but Mom too.  The medical bills have been astronomical to say the least...but we would take her anywhere in the world to improve her quality of life for her and her family...PLEASE, PLEASE PLEASE HELP HER!!! 

HEY THERE DR. PHIL, 

I KNOW THERE IS NOT ALOT OF SITES OUT THERE THAT HAVE WHAT I HAVE AND IT IS SOMETHING VERY RARE AND AFFECTS PEOPLE IN DIFFERENT WAYS. I WAS DIAGNOSED FEB 7TH 2005 WITH PSUEDOTUMORTUMOR CEREBRI (FALSE BRAIN TUMOR)  OTHERWISE KNOWN TODAY AS INTRACRANIAL HYPERTENSION. I HAVE EXCESSIVE FLUID BUILUP AROUND MY SPINAL CORD AND BRAIN THAT CAUSES PRESURE TO BUILD UP AND CAUSE ALOT OF PROBLEMS AND THE SYMPTOMS MIMICS A BRAIN TUMOR. WHEN I WAS FIRST DIAGNOSED I WAS SO BAD THAT I LOST THE PERPERHERIAL VISION IN MY LEFT EYE. AND MY VISION NOW IS 20/70 AND 20/80 AND I AM GOING BLIND BUT IT IS ONLY BEING PROLONGED BY THE MEDICINE THAT I TAKE. I AM ALSO LOOSING MY HEARING DUE TO THE PRESSURE THAT IS BUILDING UP IN MY HEAD AROUND MY EAR NERVES. DUE TO THE PRESSURE I HAVE LOST THE ABILITY TO THINK STRAIGHT AT TIMES AND BECOME LOST IN THOUGHT AND HAVE PARIETAL SEIZURES WHICH CAUSE MORE DAMAGE TO ME WHERE MY SPELLING IS OFF AT TIMES AND SOME DAYS I CAN BARELY TALK. JUST JUST 5 MONTHS BEFORE I WAS DIAGNOSED AND WAS SO SICK I HAD JUST GRADUATED FROM MEDICAL TECH SCHOOL AND HAD BECAME A MEDICAL TECH AND PHLEBOTOMIST AND I HAVE NEVER BEEN ABLE TO WORK A DAY SINCE THAT AND I AM KNEE DEEP IN DEBT IN SCHOOL LOANS.  THE SIDE EFFECTS OF MY MEDS MAKE ME SICK AND SLEEPY AND SOMETIMES A DOWNRIGHT PAIN IN THE BUTT. SOMETIMES I FORGET MY OWN HEAD IF IT WAS NOT ATTACHED. IF IT WAS NOT FOR MY MEDS I WOULD LIVE IN SEVERE PAIN EVERYDAY FROM THE PAIN AND HEADACHES I WOULD GET. I GET HEADACHES NOW BUT NOT AS OFTEN AS I DID. THIS IS A DIESEASE THAT MOST PEOPLE KNOW NOTHING ABOUT AND SCIENCTIST ARE JUST NOW STARTING TO STUDY .  THIS IS A DIESEASE I WOULD NOT WISH ON MY WORST ENEMY. I SUFFER EVERYDAY. I THANK GAD FOR MY CHILDREN WHO HELP ME WHEN I NEED THE HELP AND I THANK GOD FOR THE ANGEL HE SENT ME TO TAKE CARE OF ME AND THAT IS MY FIANCEE'. I COULDN'T ASK FOR A BETTER MAN TO STAND BESIDE ME CAUSE HE MET ME WHILE I WAS SICK AND WAS BOUND AND DETERMINE TO STICK IT OUT WITH ME NO MATTER WHAT. THAT IS TRUE LOVE THERE.  

I know how you feel.My husband had most of his colon removed and has ostomy bag.And the cancer went into his liver.He has just started his 7months of chemo.But he and I are taking one day at a time,and having a positive outlook helps.It helps to smile and care about others. 

                                                                 darellen