Waiting Mayo Clinic To Call; so desperate

So I have become so desperate with my current situation that I have actually reached out to the Mayo clinic all the way in Rochester Minnesota for help. I spoke to a rep and filled out a questionnaire and they should let me know within the next couple days if they will take me on as a patient. I hope they do because I literally feel like I am dying. I only weigh 84 pounds now and I feel so weak and sick all the time. Worse part is I have all the tests that show there is something wrong with me but the doctors are not doing anything to help me nor or they concerned that I can barley eat because of the swallowing difficulties during and the pain afterwards. I dont understand how sick you need to be for help around here. The Dr's just tell me to keep on the meds I am on when they clearly arnt working. I am literally getting scared over here. I haven't ate a solid meal in 3 weeks. I have even started seeing a therapist because of how much of a toll this is taking on me.

Anyways I am hoping the Mayo clinic will finally give me answers I need such as is my hiatal hernia worth talking about after all? My Gastro said it sounds like I have a motility disorder should I be concerned? Should a test be done? Is there treatment? My esophagus is not healing after 6 months of treatment and multiple PPI's and I am still in severe pain is it time to try something else? I also have questions about my lupus that no one likes to acknowledge I have even though I have blood work that basically proves it. I have been doing research and it shows that Lupus can cause swallowing problems and gastro issues yet my Rheummy tells me he didn't think this was from it and didn't even see a need for me to come in for an appointment.

Im getting so tired and it really sucks seeing your life slowly slip away when you were so happy only a year ago. I know we are all suffering on this board from this no big deal heart burn atleasts that what most people see it as anyways.

Post Edited (LAWCHICK) : 8/10/2015 1:35:04 PM (GMT-6)

Well Mayo clinic got back to me and they are not willing to offer me an appointment at all. I guess they don't care either.

Peabs said...
LAWCHICK said...
Well Mayo clinic got back to me and they are not willing to offer me an appointment at all. I guess they don't care either.

Whaaat? That's awful. Did they give a reason why?

All they said was I didn't fit the criteria. I am now going to try to get an appointment as NY Columbia Presbyterian in NYC which is actually very close to where I live. I almost just felt like giving up today it's hard enough being sick but when you have to spend what little energy and strength you have to find a Dr who will actually help you it becomes unbearable.

I wanted to let you know today in grocery store I found puréed micro meals from a company named Hormel. I don't know if you are trying to stay away from any of the ingredients in it but I may give it a try.

Lawchick,
If you live close to NYC have you looked up Dr. Jamie Koufman? Many people on the GERD forums have been talking about her "Dropping acid Diet", so I looked her up to see what I thought. I'm not sure what her wait time is for appointments, but there is a link on her site for a consultation. Even if you don't want to try her, there are several ENTs in NYC that specialize in voice/throat issues (these seem to be the ENTs that are in tune with the LPR idea) Good luck to you and please hang in there...I tell my son who is suffering "everyday is one day closer to getting well again". At this point he thinks I'm full of crap, but I'm trying to stay positive...and so I throw good, positive energy your way! Be well.

Linda Sue said...
From all of the posts I've read by LAWCHICK, and with her level of misery, I believe she's long past finding any relief with dietary changes ...

I'm inclined to agree with you.   She's had severe symptoms for a long time and has been on PPIs for a long time, she should definitely investigate the possibility of a surgical solution.

Nellie5,
I didn't mean to be critical, as the information you provided is very helpful and is worthy of consideration. I just feel so bad for LAWCHICK and pray that she can get in front of a doctor that will care enough to help her. I know that's what we all want for one another.

Best regards!

Hi Lawchck, I hope you will find the right doctor soon. I have been in your shoes 2 months ago. Everyday was a struggle. Been to a lot of check ups and doctor's visit and all came normal. Praise God for all results. I am a cancer conqueror, I give Glory to God. (8 years ago on the sinus area). The panic and all sorts of anxiety comes with the horrible feeling. I'm not being a doctor here but most doctor's don't really know where to start with the treatment of GERD. My great ancestor's probably have same situation and just did herbal solution and probably had better results. Based on my experience, the PPI is the best thing the doctor can recommend. It did work for me for a week or so. With God's grace had me realize that the PPI caused me to be more sick. I was taking Omneprazole 20mg then Pantoprazole 40mg as my doctor told me to continue using it until I feel better. Told my doctors that it could be the antibiotic I was taking, but doctors did not hear me (I think). I figured out myself that it was the antibiotic and other meds I was taking that had caused GERD. So probiotic and diet was the solution for mine. I only eat white rice, grilled fish. Eat small portions every 2 hours possible. I read thru all the post here and it did really helped me.

I wean myself from PPI since July 24. Instead took Zantac 150mg 3x a day for one week. Then Zantac 150mg for 2 weeks until I wean myself for 3 days now. This was just my experience and it's different on each one of us. Hope you feel better.

God bless.

Dear Lawchick - I've been following your journey sporadically. I feel so badly for you that you haven't found the right doctors yet. I'm sure they are out there somewhere.

What you said about Drs. not really understanding what we are feeling and suffering with, resonated. My Gastro-Guy waited 2 months between my barium swallow and my next appt. with him. Thank God I didn't wind up in ER. My surgeon said I could have died.....

I understand you have an awful time eating; have you found something nutritious you can keep on your stomach? I would think you might be getting pretty weak.

Well, I need to go back and read some of your most recent posts. Just wanted to say hi and thinking of you as I continue on MY journey.

Love, Fresh Greens