It wasn't just GERD and acid reflux . . .

Greetings to all the GERD and reflux patients and a special hello to those of you who remember me.

I haven't been around for a very long time because I needed time with good doctors who knew what they were doing and time to be properly diagnosed as well. I'm not there completely yet but am almost there.

I want to keep this brief but I do hear from several of you from time to time so I thought I'd drop by and fill you in a bit about what the last 7+ months have been like for me. Again, it will be brief and maybe what I've experienced will/could help someone else.

For me, GERD was simpley a by-product of a completely different illness which I've evidently had for many, many years. It is an auto-immune condition and there is probably more than just the single one I've already been diagnosed with and have begun treatment for.

Most all of the symptoms which appeared to be separate issues were actually part and parcel of the auto-immune problem so the reason there still appeared to be "issues" after my own NF surgery was because the auto-immune condition(s) had not been addressed or even diagnosed.

I hope to know more after an upcoming appointment with a major research specialist in the area of auto-immunity and at least be able to deal logically and in an informed manner with my condition after more testing is done.

I attend an auto-immune support group where I live and it helps. And I've said all this to say, sometimes, just sometimes, if you have the surgery and you don't completely recover as you should, you might ask your doctor to consider other possibilities.

Last thing: I knew nothing about auto-immune problems until my husband came across a thread about dealing with difficulties wearing a CPAP machine for sleep apnea. I'd never been able to wear mine and I was unable to sleep with or without it

This is where he picked up on the possibility of some of our concerns being connected to auto-immunity and I'm very glad he did. At least the last 20 years of my life are finally making some sense. You can't address a health problem when your doctors don't recognize it and when you've never even heard of it.

Once I have the rest of the tests done I'll be posting in a relevant forum somewhere. Just wanted to let those of you who remember me know that I hadn't fallen off the face of the planet.

Peace from Oklahoma . . .
Rita

Post Edited (halloweenbaby) : 3/22/2012 3:13:52 PM (GMT-6)

babygirl,

Happy to see you here as well! Its been a while...

I am curious to know what types of autoimmune diseases can cause GERD, and am going to look into it. I hope things are going well!

Hindsight is 20/20 and it's obvious now looking back on the last 25 or so years that all the mini-symptoms and conditions I've had to deal with separately were auto-immune related.

I only have one official diagnosis of Sjogren's Syndrome but the condition is sometimes secondary to another auto-immune disease and that's what the specialist in Texas will be testing for. My preliminary diagnosis came from a rheumatologist here in Oklahoma who is medicating me till I see the specialist.

When I look back I can see that after each surgery I've had in my life my general health has gone down. Surgery can sometimes lead to worsening of Sjogren's symptoms and in my case it has. The surgeries have always fixed the problem I had them for but my general well-being went downhill.

I no longer have acid reflux or any kind of GERD and probably didn't have any at all after the NF surgery. What I did experience was a worsening of the auto-immune symptoms. I had very good doctors but because I'd had a lot of symptoms most of my adult life they were never able to tie them together to see that their might be more than just individual symptoms.

You can just type Sjogren's Syndrome and GERD and read forever but I don't read much anymore about either of them. The GERD is fixed and there is no cure for the auto-immune conditions including Sjogren's; only treatment of the symptoms, support and a good helping of attitude adjustment.

Nice to hear back from you!
Rita

Thanks, Lynda. Yes, it's springtime in Oklahoma and we're experiencing rain like you wouldn't believe but everything is in bloom outside my bay window and so far no tornadoes in our area.

Nice to hear from you too!
Rita

Hi Rita, Good to read your thread and to know that you continue to be your own best advocate.  I hope you have read through our Sjogren's Forum.  Lynnwood  is our moderator for Sjogren's and the Lupus forums and would be a great resource person for you if you are looking for someone here in HealingWell for advice or questions.  It is a good thing you have a support group - it sounds like you are feeling better now that you have Drs. that are on the right track to finding out your problem.  Do lets us know how your test results turn out. Reading that you have continued to stay connected to some of our members is wonderful.  It is very often the case that to share how you feel with another can greatly help improve your overall state of mind. Wishing you the very best and I will be watching for your updates. Kindly, Kitt    

Halloweenbaby, Did you use a doctor in Tulsa for your Nissen? I'm considering this and can't find any info on doctors who have done this. Thanks!