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Purple butterfly
New Member


Date Joined Sep 2017
Total Posts : 7
   Posted 9/2/2017 12:58 AM (GMT -7)   
I was wondering if anyone with lupus has been diagnosed with gastoparesis? I got diagnosed about 7 months ago. I had to get a j tube feeding tube the end of may because I was getting so malnourished and dehydrated. They said lupus attacked my stomach paralyzing the vagus nerve.

<Edited to add subject>

Post Edited By Moderator (Lynnwood) : 9/2/2017 7:48:10 AM (GMT-6)


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 427
   Posted 9/2/2017 5:49 AM (GMT -7)   
Yes, I was diagnosed about 3 years ago. I was down to 85 lbs and literally could not hold down anything. I currently take Erythomycin 3x day, Pataprozole DR 2xday, Prochlorperazine and Ondansetson as needed. Currently I'm not considered malnourished, but my gastroenterologist told me if my mediation regimen stops working the next step will be a pacemaker to control the vagus nerve.

I understand that they put in the J tube because you were malnourished, but that is not addressing the vagus nerve itself. Have they started you on any medications or talked about placing a pacemaker?

Purple butterfly
New Member


Date Joined Sep 2017
Total Posts : 7
   Posted 9/2/2017 8:52 AM (GMT -7)   
We tried medication but they didn't work. I also have seizures and some of the side effects to the medications for treatment have neurological side effects so that was concerning to them. When I went to Dallas to meet with the surgeon the plan was to do the pacemaker but he felt like with all my issues I wasn't a candidate for it. He said eventually I would probably still end up with the j tube. So he felt like doing the pacemaker surgery would be putting me through an extra surgery that wouldn't work. It's terrible!!! I can't eat and I still vomit daily but by having the j tube I'm able to get nutrition and fluids to keep me going. What auto immune diseases do you have?

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 427
   Posted 9/2/2017 2:20 PM (GMT -7)   
Sorry to hear you're having so much trouble. Are you working with a gastroenterologist as well? The whole point of a pacemaker is to make the vagus nerve work so you can hold down food, so I would really urge you to get a second opinion. It sounds as though right now you will be on a J tube for the rest of your life, there has to be a better option. I also live in Texas, there is great medical care available, I traveled to Dallas, Houston and currently work with a great team of doctors in San Antonio that coordinate so everyone is aware of what is going on with my treatment. My primary disease is Lupus NPSLE, I also have fibromyalgia, sjogrens, raynauds. I've also been diagnosed with occipital and trigeminal neuralgia so I have learned to be my own advocate.
Hugs;
Melissa
_____________________________________________________
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

Purple butterfly
New Member


Date Joined Sep 2017
Total Posts : 7
   Posted 9/2/2017 3:24 PM (GMT -7)   
Yes I see 2 gastrologist. One here in Amarillo tx where I live and my other one is at Baylor in Dallas. My surgeon is also in Baylor. I have sjogrens, fibromyalgia and anaphosalipid syndrome. My primary is also lupus sle. It's involving my vocal cords, I have seizures and now my stomach. thank you for chatting with me. It's been really hard.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 427
   Posted 9/2/2017 4:45 PM (GMT -7)   
Bless your heart. Sounds like you have a good team of doctors. I pray they find a solution for you. Amazing you mention your vocal cords, mine are affected as well! They tell me it's inflammation, all I know it's getting worse. There are days I have no voice or like today my voice is very gravelly. How are yours affected?
Hugs;
Melissa
_____________________________________________________
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

Purple butterfly
New Member


Date Joined Sep 2017
Total Posts : 7
   Posted 9/2/2017 5:48 PM (GMT -7)   
The same as yours. That's actually why my doctor tested me for lupus. I lost my voice and couldn't get it back. I went to my ENT and he couldn't figure it out. My vocal cords were just inflamed. So he sent me to a voice therapist. I worked with her and it kept getting worse. She said it had to be medical. So I went back to my primary and we started talking about me having seizures and at the time I count stay well. My immune system was not good. So he sent me over to the lab and tested me. It was crazy but him and my ENT was glad they finally figured it out. But it sure wasn't something I wanted to hear.

Purple butterfly
New Member


Date Joined Sep 2017
Total Posts : 7
   Posted 9/2/2017 9:43 PM (GMT -7)   
I have one more question and I will leave you alone. It's just nice to have someone to chat with about everything. Did you have symptoms leading up to raynauds or did your fingers just turn colors one day?

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 427
   Posted 9/3/2017 7:19 AM (GMT -7)   
No problem, feel free to send me a private message anytime as well. With having so many different issues I don't really recall noticing any particular issues in regards to the raynauds in the beginning until my fingers began turning colors when exposed to the cold.
Hugs;
Melissa
_____________________________________________________
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.
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