Posted 08 February 2008 - 01:19 PM
I thought human body has natural tendency to heal itself.
I have seen few temporary solutions such as stretching esophagus etc, but not any permanent solution.
Any pointers or guidance is well appreciated.
Basically, I am between rock and the hard place. I have severe acid reflux, but I have equally bad esophagus motility issues. Increasing Aciphex from one to two, has not provided any relief.
Posted 08 February 2008 - 03:20 PM
Gareth struggled with esophageal dismotility for 10 months before they put him on Plaquenil in June '07. In Sept. '07, he told me that his food was going down and no longer got stuck.....so, I guess it can be reversed. He has been on GERD meds since he was 10....long berfore sclero was in the picture.
Take care, Everyone.
Posted 09 February 2008 - 07:24 AM
Posted 09 February 2008 - 08:29 AM
Welcome to the Sclero Forums. I'm really glad you've joined us, but sure sorry its due to you being ill. We're all in the same boat here and are able to support each other wonderfully. So, welcome!!
Posted 09 February 2008 - 09:30 AM
Posted 09 February 2008 - 10:17 AM
Welcome aboard...some of us are fairly new here too....sorry to hear you've had a nasty time with that esophagus! I'm sure you will find alot of people on this site very knowledgeable and helpful with this disease.....I do.
Posted 11 February 2008 - 05:29 AM
I'm so glad you found us. There are so many wonderful friends here that you will come to know. It's so nice to finally know that your not alone in this battle. Just remember there is always someone here to talk too.
Posted 17 February 2008 - 04:34 AM
I just joined. I am still undiagnosed by a doctor, but I have been suspecting sclero for more than a year now. I have what has been called CREST, at least I think so. I'm afraid to really push for a diagnosis because of the problems then faced with insurance.
I have been having problems swallowing certain types of foods for more than 5 years. I think this is getting worse lately. I seem to be having almost a panic attach because I can't seem to swallow the phlem that builds up in the back of my throat. Noodles, tuna, chicken, pork, dry cereal, all seem to back up in my throat. It seems like part of what I'm trying to swallow sticks or even goes up rather than down.
When I talked to my doctor about this, she looked at me like I was crazy. She recommended a neurologist who more or less said that it wasn't his area. Rheumatologists said nothing is wrong after blood tests came back without any clear problem, ANA screen positive at first so they did a count which supposedly came back negative 3 years ago. I was told I had fibromyalgia: sip water, suck on hard candy (burning mouth syndrome at all times), I use Restasis eye drops (5 years of that).
Opening my mouth for the dentist is extremely painful, lines on my forehead seem to be smothing out, puffy shiny fingers in the morning for more than an hour, one calcium deposit near my eye, 2 tangliasia (spelling?) on my face, some small trouble with Reynaud's on fingers.
I told my doctor that I felt like I was breathless at times and again - all in my head? I have heart arrhythmia diagnosed more than 8 years ago.
Sorry about the long post. Sorry it is a rambling rant about my symptoms. I'm depressed, stressed, angry, you name it, I feel it.
Posted 17 February 2008 - 06:07 AM
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Posted 17 February 2008 - 10:30 AM
The end of January, on... I went through a few tests to explore a few issues I've been having trouble with... one of which included this.
I was sent to an ENT, who used a lighted scope to check out my throat... via my nose. Because I have a gag reflex, due to a deviated septum, thus the inability to breathe through my nose, the dr numbed my nose/throat which made the experience more tolerable. He then set me up for a barium swallow, which further confirmed how extensively damaged my esophagus was. Swallowing solutions? *Shrug* I MAY see my internist THIS month, at which time I MAY get answers from her, as the ENT MAY have made notes in my chart. I WILL call the ENT's office and ask for a copy of his notes and the reports he has to date, regarding the tests.
Hugs to you,
Posted 17 February 2008 - 11:09 AM
Hope you can push to see another rheumatologist...it's so important to get a doctor you are comfortable with and one that knows what is going on with you. Not sure where you live but if you ask us for specialists in your area, someone on this site will definitely be able to help you, they always do. Maybe then, you could ask your family doctor to send you to a specific rheumatologist of your choice? How long ago were you get told those things, was it recently? Sounds like you have been struggling for some time now. Glad you decided to join this site, you'll find everybody very helpful with any questions you have, I'm sure.
Posted 17 February 2008 - 06:22 PM
I would suggest seeing a GI specialist as well. It may be necessary to do following four tests to understand complete problem:
PH probe test: measures acid reflux. It measures severity and occurrences for a 24 hour period. I have gone through the test with and without acid reflux medications and it proved my acid reflux medicine is working fine and I will be better off increasing dose of my acid reflux medication
Esophagus manometry test: Although painful, but is very useful in diagnosing motility of esophagus. Also, it gives the view of functionality of valve between esophagus and stomach (LES)
Barium Swallow test: Complements Esophagus manometry test to measure how food passes through esophagus and is there a backflow of food. If food is passing too slowly you have major issues with Achalasia.
Gastric emptying test: Time required for your stomach to empty
These four tests will help to decide future course of action.
Posted 18 February 2008 - 01:56 AM
I haven't seen my regular primary doctor in over 3 years. The few times I've needed a doctor, for my separated shoulder and other small issues, I saw her colleague.
I was wondering if it is worth getting a true diagnosis? Is there really much that they can help with? I'm seeing an eye doctor. my dentist is good and works with me, my gyn is great and has talked this over with me. My physical thearapist suggested talking to a speech thearapist about my troubles swallowing. When I first talked with my doctor about this she seemed to think I'm a hypochondriac and I am seeking attention.
The only thing. I'm scheduled for surgery in march for my shoulder tear. Will having sclero affect surgery and anethesia in any way? I'm nervous about a breathing tube for general anethesia. It hurts to have my mouth open for too long.
Posted 18 February 2008 - 04:36 AM
UW should have some excellent Gi doctors.
As afar as getting a diagnosis I guess it depends on if your doctor will treat your symptoms with or without it. Sometimes it is important so people see you as a serious case rather than a hypochondriac. My dad thought I was one too. My diagnosis took 4 doctors and 5 months to get. I wasn't seeking a diagnosis per se I just wanted to know what was wrong with me - I just wanted answers.
If you do have sclero and are on meds like prednisone your healing time may be effected. A doctor once told me sclero patients not on any meds that affect the immune system actually heal faster cause the over production of collagen increases the healing process.
Lastly, welcome and I'm glad you found us! In one of your previous posts you expressed anger and frustration which is totally normal. We've all been there and sometimes we are still there. It's not an easy condition but it is manageable. I do encourage you to find a doctor you can work with who will treat your symptoms - if you can't get a diagnosis - that way you don't progress or slow any progression.
Are you from Seattle? I'm originally from Redmond.
Take care, peanut
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 18 February 2008 - 06:06 AM
Posted 18 February 2008 - 07:29 AM
I appreciate your suggestions and am confident the doctors will likely follow along those lines.
I have always been so fortnunate, in that the doctors I see have been quite competent... at least in my mind's eye
I do have Achalasia and was once diagnosed withBarrett's Esophagus... the latter being "reversed". However, w/our diseases, things have a way of changing. I did the *shrug*... in my previous reply, because the ENT called me by phone, as did the Endo's nurse withall sorts of "news". Unfortunately, I was leaving the following day on vacation, so all of this has remained in the back of my mind, since. I did ask my Endo's nurse to send me all of the reports she had to date, but all that she reported to me, was not included, which was a bit disconcerting
An app't was made for me to see the endo in March... however, he also told me that he could be available after hours to visit if I needed to.
Anyway, I have a lot of irons in the fire, pertaining ot my health... so the next little while will be "interesting".
Thank you again, kamlesh.
Posted 18 February 2008 - 08:48 AM
I'm working on getting a referral at this moment. I'm a little scared to pursue it.
Lunch wasn't a good thing today. I was eating soup (good) and crackers (okay). The cookies I decided (100 calorie pack) were a bad idea. Things seem to get stuck just at the point where they should go to esophagus and not trachea.
Thanks for the replies.
Posted 19 February 2008 - 07:24 AM
There have been good suggestions offered you. Do you have a Sclero specialist or Rheumatologist? If not, getting established withone, as well as an internist, would be a good move.
I hope that your surgery goes well and your recouperation smooth... It sounds as though you are aware that it would be good to have a doctor overseeing your overall health issues.
Please take care.