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hope7511

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Reply with quote  #1 
My boyfriend has CVS been diagnosed for years. Seems like he can never catch a break always upset to his stomach or sick. There's a whole cupboard of pills but just a little hint when you can't keep anything down how is that suppose to work. I'm just frustrated cause we have no life he cant do anything we cant plan anything. ER just sends him away after some IVs . what do I do
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ginny

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Reply with quote  #2 
I am sure this is tough for both of you.  You sound like a remarkable support person.  I don't recall if you posted about test that have been done, results, if he is a cannabis user or other details.

if he is not a cannabis user and all the required tests have been run with no significant findings and there is a clear diagnosis of CVS, then I think his doctor would agree to consult a CVSA Medical Advisor.   Is it possible to travel to WI to see Dr. V?  

There are some newer meds that Wynnak wrote about after the recent Family Conference in June.  Have you been able to read that post?

Some progress is being made and "adult treatment guidelines" are due out quite soon-- I think by the first of the year.  





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wynnak

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Reply with quote  #3 
Did we also talk about contacting the office for a list of Doctors familiar with CVS from the office? 

We all have that cupboard of meds. It is more about finding the correct combo of meds or supplements to work for him.

I would say that the best thing we could have done for my son, was to find a doctor that WANTED to help him. Find a physician that sees him for the CVS. That is willing to learn and work with other physicians to find what will work for him. It took us quite a few. But we kept looking. Sometimes we were desperate enough to go to the harsh physicians just to get something done. We would go to the ER for fluid only. Not treatment. Fluids and anti- nausea meds. Our PCP eventually set up infusions at a center for us when he required them daily. 

The newsletter with the write up from the conference is coming out soon. I believe it is at the printer. So if you are a member, be looking for that. If not, the Adult Guideline will be published early next year. They are currently in a review process prior to publication. Hopefully, we will be able to gain enough momentum with the publication that treatment of CVS patients will get better. 


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Blynda
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hope7511

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Reply with quote  #4 
I haven't been on here in a couple years but yes he has had every test in the book has been a canabasis user in the past they did test for that having him quit for years etc.... Nothing... Candy is for sure one of his triggers. Every Easter ..sick!! We know another guy that's trigger is orange juice but my boyfriend loves it. He didn't get CVS until he was 34. Not much luck with doctors around here. His gastro right now and his nurse pract are the best around here yet that care. He recently has fought for 4 years to get disability and after court with a judge he won!! I feel like I'm selfish sometimes cause its so exhausting. But then I tell myself are you kidding look what he goes through.. We are in Ohio so WI isn't completely out of the picture. So possible could get there. I have not gotten the chance to read that article but I will for sure. I agree with the ER also just for fluids. They know him by first name but for some reason I have to tell them what to do every single time..
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wynnak

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Reply with quote  #5 
Glad the disability came through. That is wonderful!

If you get a list of physicians from the office, I believe that we have several to the Cleveland Clinic. I would check there as well. But, like you said, Wisconsin is right there.  

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hope7511

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Reply with quote  #6 
He has been to the Cleveland clinic they are the ones that finally truly diagnosed him. Dr Wang she is no longer there but before she left she gave him meds and said he can start seeing his family Dr. Which is now retired .
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MiamiLargo

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Reply with quote  #7 
Hi Ginny or Blynda,

Could you send the post re: the newer meds Blynda wrote?  Thank you!
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hope7511

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Reply with quote  #8 
Yes I can't find it either
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wynnak

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Reply with quote  #9 
Was that Dr. Li's publication? or a response to someone? 



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Blynda
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MiamiLargo

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Reply with quote  #10 
There's a mention of newer meds from the Family Conference in June in the third paragraph of post #2 a week ago above:  "There are some newer meds that Wynnak wrote about after the recent Family Conference in June.  Have you been able to read that post?"    We're not sure where to look for the post but it would be great to review.  Thanks for this and for everything!  
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ginny

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Reply with quote  #11 
Blynda, I am not sure where this post went.  I used the date of the conference and searched forward.  You mentioned a variety of meds.  I will search again. 
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