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shayden

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Reply with quote  #31 
Hi MaggieMae -

I’m thankful y’all have at least found this forum and CVSA - I encourage your son and daughter-in-law to join as well! There is also the CVSA Facebook page and another Facebook group called CVS (Cyclic Vomiting Syndrome) Support Group that has members worldwide.

Yes - it does seem crazy, but having been in the hospital 82 days this year alone, I’d fly just about anywhere that could give me hope of relief and being able to get some of my life back. As you know and are seeing, this illness can be so disruptive and disabling.

Aside from going to see Dr. V, I have a local GI who I see for maintenance and follow up care after I am released from the hospital. He provides letters for work/disability filing. I keep him posted on Dr. V’s treatment plan, and he will assist in prescription refills, etc. I continue to educate him and the hospitalists who provide treatment during hospital admissions - I find the ER docs and hospitalists are the ones who need the most education.

As far as making CVS more public, we as CVS sufferers and their support systems play a big role in spreading the word. March 5 has been recognized by the House of Representatives as CVS Awareness Day. I, and many other members create CVSA Facebook fundraisers for birthdays, awareness day and more. And unfortunately we have to be the ones to educate the doctors - I have a binder of my medical records - in the front I keep CVS info, and take this with me to the ER and hospitals. Hopefully the Adult Guidelines release will help as well.

Wishing you luck in finding a provider. Please keep us posted and let us know any questions you may have!

Best,
Serena
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MaggieMae

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Reply with quote  #32 
Again thanks to all for your insight and support. Has anyone been watching Ann Curry's Chasing the Cure? It was on the last two Thursday nights. I've emailed them to please look into CVS. Please email them to encourage them to investigate this illness. They have numerous doctors available to investigate a variety of illnesses. chasingthecure.com
I am willing to do anything and reach out to any and all resources to try and find something, anything to help. Thanks to all.
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wynnak

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Reply with quote  #33 
MaggieMae,

Have you asked for the Doctors list? It changes all the time. CVSA is at the American nuerogastroenterology and motility society conference right now.

If you have a physician that is empathetic, they can consult with our advisors.

Please go to the website, or contact the office for the list.

We changed drs several times.. keep trying and keep fighting.

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Blynda
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scooky1

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Reply with quote  #34 
Maggiemae

Hi - Steve Here!
About 26 - 27 years ago I got CVS ,it took a few years to be diagnosed, when I found out what they said I had I went crazy doing as much research as I could to find out as much as I could and trying to get research going etc. I was going around to DRUG stores handing out information on CVS for them to put out in their info stations and I was on a mission. Well here it is all these years later and I am pretty much right where I started! except for the fact that I am an expert on how to try and have an ER visit that goes the way you want.
And even that hardly ever goes well to this day. I see you doing the same thing I did and so many others have done here on the MB.
I do wish you well in your quest to find a cure for your in law but I honestly believe time can be best spent on staying calm and trying to be ready for the next CYCLE and having everything in place for the next time as well as having everything ready for when you get home, Who's watching the kids, pets and the family etc. set up your life to live with CVS and let the researchers do what ever they are doing. Want to find a cure for CVS? You will need a billion dollars and most likely the rest of your life and somebody to carry on your research when you are gone.
I am sorry to sound like such a downer but I, as well as many others have been wanting the researchers to come up with the CURE for many years all the way back to the time in the 1800s when some Chinese Dr. labeled this illness, I think that's kinda the way the story went.
Any way I wish your daughter in law and her family well !
PS - you sound like a really great mother in law!                                                 Good Luck, Steve
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MaggieMae

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Reply with quote  #35 
Again thanks to all for your insight, experiences and thoughtfulness.

In day 24 of this last episode she started to feel better. But it only lasted for two days. It's now day 45 and just as bad. I called a doctor in Pittsburgh who is familiar and works with CVS patients. I was told they are scheduling for August of 2020. I was very persistent and explained what is going on and how she can't get any help here in rural PA. They asked my dil to call and they would request her records. So she called and they scheduled her for an appt on 9/25, great news even if it's over a month away. I then called the local gastro and begged them to prescribe something for the vomiting. She has lost soooo much weight. They are seeing her Friday to try and find a med that will alleviate the vomiting until she sees the Pittsburgh doctor on 9/25. This is such a debilitating and horrible illness.

I talked to her this pm and tried to give a pep talk. She feels so useless. She feels guilty because she just can't do what she's always done, take care of the house, work, take care of her family. I told her that she must think of herself first now. And that she can't take care of anything if she doesn't take care of herself first.

Anyway, I just wanted to give an update and to thank you all again for listening.
 
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wynnak

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Reply with quote  #36 
Sorry that she is still struggling.

Her physician can contact CVSA for a consult with an advisor. However, if you are talking about Dr. Levinthal... YAY! Please tell me it’s Dr. Levinthal...

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MaggieMae

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Reply with quote  #37 
Yes, Dr. Levinthal!  I'm just hoping and praying that he can help her.
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wynnak

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Reply with quote  #38 
Dr. Levinthal is fabulous!! Please let us know how it goes. Maybe if she is inpatient you could have her transferred.
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Blynda
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MaggieMae

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Reply with quote  #39 
Do you mean in patient now? She isn't, our local hospital basically has said that they can't help her and discharged her. The frustration abounds!!! The local gastro shrugs his shoulders when he's asked questions about CVS and the hospital can't help her. I'm just plain angry at all of them. But, very thankful that we got her the appt next month, praying he can help her.
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MaggieMae

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Reply with quote  #40 
Update, she had a terrible night last night. Our son took the day off and took her to UPMC Pittsburgh ER early this morning. They admitted her and she saw four doctors today, they work as a team. They are going to come up with a game plan on treatment.

I'm just praying that they can get her to the point that she can eat and get some nutrition. And prescribe something to stop the vomiting. Our son made them aware that she has an appt on 9/25 w/Dr. Levinthal, so crossing fingers that he can see her sooner. Thanks to all for your support!
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ginny

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Reply with quote  #41 
Just a very cautious mention to be sure testing is being run.  What seems to be a classic CVS cycle can be something very different.  Never assume a cycle is just another routine cycle.

Wish your update was a good news one but please keep us updated.  Sending prayers your way.

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MaggieMae

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Reply with quote  #42 
Yes, they are doing tests. She is feeling much better already with the meds that they've put her on. She actually ate her meals today. The great news is that the four doctors that are seeing her work with Dr. Levinthal, so when she sees him next month, he'll have everything from here locally and from this admission to UPMC Pittsburgh. Feeling very hopeful that she'll finally get some relief. Our local hospital and the local gastro are clueless about CVS.
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scooky1

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Reply with quote  #43 
Hey!
Glad to hear she's better and making some progress, you may want to take a look at the med combo I am currently trying , I have posted about them.

I have been on them for a while now, I haven't been in the hospital in months, but as you see with your daughter in-law the monster can sleep for a long time and wake up at any time.

One time about (a long time ago)I went around a year without any trouble at all! feeling really good! And right about that time I ended up in the ER.

But this time it really might may be hopefully working, I'm pretty sure! 

Take a look at the post's, how I heard about this med combo and the woman who told me about it.

Your daughter in-law may want to take a copy of that story to the upcoming  Dr. appointment to see what they think.
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wynnak

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Reply with quote  #44 
I’m glad the decision was made to take her somewhere else. Sometimes that is what it takes fresh eyes. Or in this case a hospital that works with a doctor knowledgeable about CVS.
I’m glad they are doing testing. Like Ginny has mentioned. I have heard a lot of stories about misdiagnosis of people because their physicians have not run tests.
Please keep us updated.

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Blynda
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MaggieMae

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Reply with quote  #45 
Scooky, Yes I wrote down everything that you shared. I so appreciate everyone's advice and support. Thank you everyone.
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