plaxico6

Bless you! Thanks for the update. Praying they can come up with an easy solution for you that will not result in further surgery. Hang in there!!

Ancy, I would love to hear what your GI Dr had to say at your appointment. Update me if you can.

I have had a j-tube since 2008. I do not know the "name" of mine but I can tell you that my GI Dr. has to use an upper endoscope when he changes my tube (appx every two years). It is secured on the inside somehow. I'm sorry I can't be more specific but hope that information helps in some way.

When I first got sick (8+ years ago) I chose "HOPE" as the word to represent my outlook on my illness. Everything I was reading at the time did not sound good/look good as far as recovery/overcoming this illness. HOPE is that positive spark that keeps pushing me day to day, sometimes minute to minute through tough times. HOPE is that there will be good days ahead. HOPE is that I may be able to function more. HOPE is any positive change. HOPE is realizing how blessed we are even on our worst days. HOPE is realizing the day is not over, so I might stilI feel better today. I am a Christian

I currently take bystolic with no trouble. (Knock on wood!!!) ha! I tried several beta blockers before they found this one for me. My personal opinion is I would be scared of more ablations. That has permanent consequences. I have known someone who had too much ablated and is now pacemaker dependant. I'm always very leary of any treatment that can cause lasting/permanent consequences. I agree the ER is not a place to go for medication regulation. Prayers for some relief from your symptoms. "Need a break from being that rare patient"...oh how I totally understand that statement!!!! This

Does anyone know the status of Dr Grubbs as far as him seeing new patients? Thanks, Kim

My sister is hospitalized for severe pain from SFN that we could not control at home. We are having limited success with our treatment plans. Please offer any treatment plans/suggestions that any of you have tried. We are aware of IVIG as an option, but have not pursued that yet. Thanks, Kim

I have been hospitalized for 3 weeks with persistent neuropathy. We have tried neurotic, lyrical, tegretol, alpha lipoic acid and various supplements. Right now they are treating me with Demerol and ATIVAN with unleashing results ! Please post any ideas or medicines you have used to treat uncontrollable neuropathy? HELP !

Racer, I wanted to give you some advice from someone who's been down this road. I had several gastric emptying studies several years ago that were considered normal, but I was nauseated constantly and only able to keep a small amount of food down. They tried a nasal feeding tube (as a trial prior to placing a g-tube(which is in your stomach)). I couldn't tolerate the tube feeding and was actually vomiting the tube feeding. They finally did a motility study through my small intestine which showed it only functioning at a fraction of normal. The decision was made to place a j-tube (which is

I have had the constant NAUSEA for going on 6 years. As far as I know we have tried everything with hardly any results.NOW the neuropathy has started, probally really bad within the last 6 months. Burning all over but really severe in one area around my spine in the upper to mid back. It steadily gets worse and spreads amd has even caused shakes / tremora similar to Parkinson. We have tried iv fluids, zofran pill and iv,kytril,phenegran,reglan,steroids,marinol,domperidone,mestinon and some I cant remember.I have a feeding tube for nutrition in my small intestines and never can take anything by

I am more than willing to help with this project! I was very active with crafts....even quilting before getting too sick with POTS. If it is something that can be done from my recliner or bed, count me in! Let me know what I need to do. Plaxico6@frontiernet.net

I was at Mayo in Rochester in June of 08. At that time I was diagnosed with POTS. My main problem was extreme nausea that I have now been dealing with for 2 and a half years. After leaving with this DX I was hoping the meds and recommendations would make me functional. But it hasn't! I am still dealing with the nausea but at least I am getting nutrition with my feeding tube. I had sent my neurologist and autonomic neurologist a letter asking for some more help. All they had to offer was another anti nausea med and it didn't work. They said thAt was all they had to offer. About a month ago I al

Hey to all, I was wanting to see who some of you use for doctors.As some of you know I have extreme nausea and was diagnosed with POTS at Mayo in late June.Even before the diagnosis my main problem has been the extreme nausea for over a year now.I have a feeding tube and just cant get any relief.Of course I have other problems as all of us do but I just cant function with this nause.I will go anywhere for 1-4 days without any food at all other than the jtube feeding.I have a local internal medicine doctor I see here in Tupelo MS but he is not familiar with POTS and tells me he dont but he stil

Hey guys, Its been a while since i posted.After 1 month from Mayo with pots diagnosis I am not much better. I havent thrown up but i have had dry heaves 2-3 times.I am currently on toprol 12.5mg.This seems to have brought my heart rate down but the extreme nausea is still there and has never gone away.Its been about 8 months or longer that i have had the 24 hour nausea.I cant eat sometimes for a couple of days.I am just barely a few hours away from iv fluids and or feeding tubes.I am asking if you guys will again share any help with the nausea.Maybe meds you are taking or any alternative cours