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dgolden

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Reply with quote  #31 
u can get a list of drs that deal w/cvs from the cvs website
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donna golden
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wynnak

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Reply with quote  #32 
Quote:
Originally Posted by Trisha
Hi, my daughter has had CVS for three years.  Right now she is on her 15th day this episode.  The ER gave her a shot but refused any Narcotics (said very testy) saying she needs to see her reg. DR. who said she needs to stop going to the er and deal with this at home.  What is the best doctor in Mass. that I can go to?


Trisha,

My sister had really good response at Children's Hospital in Boston. Didn't have a specific doctor so I can't help you there.. But hope you can find someone for her soon.

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Blynda
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ginny

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Reply with quote  #33 
just thought y'all would like to maybe add this Dr. to the list for people to look up if they live in California. His name is Dr. Edward Feldman from Cedar Sinai in Los Angeles, California. He has been doing some research on CVS out here in Ca. My GI. Dr.s told me to give him a call and see if I could get an Apt. with him. The only bad thing is he does not take Ins. he only takes cash to see him and I am sure the treatment would have been a high cost? But after I wrote him a letter telling him about my CVS and how I have been treated in the ER. He called me and talked with me and I told him my horror stories about the ERs and the Dr.s I have seen and treated by them. They were all the horror stories that you all have lived with and are living with now. Any ways he called me and then mailed my Primary and my GI Dr.s a protocol letter on how to treat me and other with CVS. This letter I keep with on me all the time to give to the ER. plus my Dr.s sent them to the ER.s I go to. 
So you just may want to ad him to the list of good Dr.s to contact if they want info on treatment and if people have the $$ to see him. 
Thanks.
Charlie

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ginny CVSA Moderator
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cathypitts7

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Reply with quote  #34 
Good morning. I am sharing this info in hope that it can help someone. My son was diagnosed by the Cleveland clinic as having CVS and after so many Doctors, surgeries,and tests with no relief I was scared to death about his future. About 2 months ago he got a bad cold and I took him to our PCP. He saw Dr. Balmier for the first time. We talked about the CVS and he asked me if he could try something. He had My son lay down and the Dr. Had his intern come in. The Dr. Gently rotated his neck while the intern had his hands under my sons lower back. For about 5 minutes the Dr. Continued to manipulate his neck. The Intern finally told the Dr. That he everything was now in line. Crazy?? Yeah I thought so. Dr. balmer explained that sometimes when surgery is done and they insert a breathing tube, it causes misalignment which can cause our bodies to do all sorts of different things. (This all started after an emergency appendix removal). It has been 2 months and my son has not vomited, is off the nausea medicine and has not been rushed to the hospital. After over three years of being sick, in bed, weekly trips to the E.R. And losing 100 pounds...he has gained 20 pounds, he is eating so much I can't keep groceries in the house and he is acting like a normal 17 year old. If you have a Dr. In your area who practices Osteopathic medicine, call them. Dr. Balmer is in Spartansburg, Pennsylvania if you want to call. He has many assistants but make sure you get an appt. with him if you do call.
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cathypitts7

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Reply with quote  #35 
Quote:
Originally Posted by emnealon
I am wondering  if anyone has experienced with the Clinic for Cyclic Vomiting Syndrome in Ohio  at the Cleveland Clinic?  I called the number listed on the CVSA newsletter and was told I had the wrong number. I explained where I found the number and was Put on hold and told yes this was correct!?! I made an appointment for our 19 year old daughter. We live in Syracuse NY and it will be quite a Trip. We will see a neurologist Shelia Rubin at Willoughby Hills... Any information would be great. She has been to 5 or 6 different Gastro Docs. But has not seen a neurologist...Thank you
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cathypitts7

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Reply with quote  #36 
Emnealon, we made many trips tp Cleveland clinic and one of the doctors there said we needed a psychologist. See my prev. Post. If you have an osteopathic dr in your area it is worth a try. If not Spartansburg,pa. Is not too far of a drive for you. Wish your daughter the best in finding a Dr. Who can help.
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Doc

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Reply with quote  #37 
I lived in deep south Texas when I was diagnosed, and received excellent care from Dr. Melva Palacios. I cannot say enough great things about her, and she will advocate for you in the ER, and is fine with you calling her up at all hours of the night when you have to go to the ER and they are giving you a hard time. She is a family practitioner boarded in internal medicine that practices out of McAllen, TX. At least she used to... I just did a search and I think this is where she is now, but can't be sure as I couldn't find a website or first name.
 
2722 W Canton Rd, Edinburg, TX
 
(956) 383-4157
 

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Doc

34 year old veterinarian. Adult onset at 25. Some recent flare ups but working through it! Breathe, stretch, relax.
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han

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Reply with quote  #38 
Hi, I'm in central Washington. I could travel to Seattle preferably or Spokane but am looking for a new doctor. My primary care doctor does not know about CVS and won't. She and the ER in my town are stuck on how to treat me, they can't get IV's any more, and have basically made it so I don't feel like I have any support from any professional when I'm sick. I read this thread and found a recommendation for one Doctor in Seattle, but looking for more options. I couldn't find information on the CVSA website like someone had mentioned.
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Shannie831

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Reply with quote  #39 
I am currently living in Seattle/ Tacoma area. My MD, Dr. Allison Odenthal, at MultiCare. She is a CVS believer. Any person in Washington drive to Tacoma and see her.
I am moving and looking for a MD in the California Sacramento/ Bay Area . Help.

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Shannon tulloh
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Anela

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Reply with quote  #40 
I live about an hour outside of Cleveland. I'm an adult, who started throwing up for no reason, in the early part of 2010. I thought it was just stress, but it kept getting worse. I've never been diagnosed, and when I googled in the past, I didn't find this site, or the one that I found earlier, where people were talking about gastroparesis. I wish I had - it's only recently that I had a "duh!" moment, when we were driving through Cleveland (on my birthday), and miles and miles had us surrounded by Cleveland clinic buildings.

I couldn't afford testing, and still can't. I don't have insurance. I had stomach issues in my early twenties, and my parents thought I might have an ulcer (I've also had problems with anxiety and depression since my childhood).

I've sampled different things diet-wise, but only really tried over the past year. Before that, I was afraid I was just throwing up everything, and didn't want to do that with expensive supplements, foods, drinks, or medicine (I can't swallow pills, so would have to have liquid). Is there anyone at the Cleveland Clinic who could actually help me with treatment? Or would they just tell me that they can't do anything? I'm currently drinking soup with gelatin powder added, but have been sick for days on end, and it only stopped this morning, and briefly, two days ago, until I drank my tea. I managed to drink some ovaltine before falling asleep this morning, after my stomach had been empty for a couple of hours. I'm trying both vegan and paleo recipes (Kimberly Snyder focuses on good digestion, and I found her book in November 2011, although the "beauty detox" bit drew my attention at the time).

I was so happy to find this board this morning - I've been grossing people out whenever I've needed to talk about it, and felt like a freak. I also wondered how many people thought I was just bulimic (I haven't lost any weight, which is weird - it fluctuates slightly, but I must be maintaining calories with the coconut oil, and a few other things).

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ginny

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Reply with quote  #41 
Please email the CVSA office at cvsa@cvsaonline.org for the list of adult doctors in the Cleveland area.

There are diets that do seem to help people and all seem to have no or few additives.  We don't know much about the diets.  Some are Gluten Free, others are not fully GF.

I also spoke with a lady the other night who has been fine after following the diet in the book Cure Your Headaches.  She sees the doctor who wrote the book, at Johns Hopkins.  He did not "believe" in Abdominal Migraines when he wrote the book (she has AM, semantics with CVS having the vomiting predominate) but she says he now does "believe" in AM.
For her and some others who have written to the message board, the Headache Diet has worked.  Your library should be able to get the book

To diagnose CVS, you will need testing to rule out other conditions.



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ginny CVSA Moderator
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psyork

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Reply with quote  #42 
I have a 20 year old son who has CVS.  I need to find a doctor in our area that is familiar with CVS.  He was diagnosed by an ER doctor.  His family doctor is not familiar with CVS and believes his episodes are a result of anxiety.  We live in the Toledo, Ohio area.  Help!
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Pamela York
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hope7511

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Reply with quote  #43 
I live an hour and a half outside Cleveland and my boyfriend had it. I know someone at Cleveland clinic I forget his name specializes in children CVS but sees some adults. We seen Dr yinghong Wang. She diagnosed my boyfriend along with another Dr. He started with it in early 2011
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mom2kayceebug86

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Reply with quote  #44 
So after reading all the posts several times for the last 7 years...this is my first post.  My Daughter Kaycee(she is 28 now) has been dealing with CVS for about the last 7-8 years.  It took us about 2 years to get an official diagnosis.  I was graduating from Nursing School, and working at a GI Clinic at the time she was starting to get sick.  With a lot of research and questioning the GI doctors I was working for, we were able to learn a lot about CVS.  CVS information has come such a long way since we first started looking into it.  To everyone out there suffering with this horrible disease...Keep the Hope!     Her doctor has worked with us and has been just wonderful.  She is located in Broomfield, Colorado.  I have not asked her yet if I can display her name on here, but if you live in that area and are in need of a doctor...message me and I can pass her info on to you.  
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mom2kayceebug86

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Reply with quote  #45 
One more thing....my daughter is going to try the SUMAtriptan.....has anyone else tried it with any success?
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