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plaxico6

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Everything posted by plaxico6

  1. 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!!
  2. Ancy, I would love to hear what your GI Dr had to say at your appointment. Update me if you can.
  3. 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.
  4. 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. HOPE is that my illness may bring others to Christ. If my suffering can lead others to Christ, it is all worth it because I know how this story will end. I will be healed one day!!! Either on this Earth or when I reach Heaven. HOPE is crossing that finish line and being healed. I came across this definition recently...."absolute certainty mingled with anticipation is the definition of HOPE in the Bible." -Adrian Rogers.
  5. 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 is not a fun road to be on. Stacy
  6. Does anyone know the status of Dr Grubbs as far as him seeing new patients? Thanks, Kim
  7. 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
  8. 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 !
  9. 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 in your jejunum-small intestine) in hopes I could tolerate tube feedings and receive nutrition. This has worked well for me for several years. I'd ask for a motility study through your entire GI tract so your physician can assess how probable a g tube would work for you before they place it permanently. I hope this is helpful to you. God bless...
  10. 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 mouth due to the nausea.(except for meds I cant crush) For neuropathy we have tried neurotin,depakote, and lyrica. As all of you are, we are just trying for some relief. I have a really great doctor that is open and willing to lsiten to new ideas! Any ideas???
  11. Michelle, I checked my settings and I am still not receiving emails on new posts? What do I need to check? Thanks Stacy

  12. 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
  13. 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 also sent out a letter to my initial Internal Medicine doctor I saw there at Mayo. Well he called Thursday to check on me and was so compassionate! He himself called and asked if I would be willing to come back! He said that is not the way Mayo wants the outcome of patients to be. At first I was hesitant but now after thinking about it I'm ready to go. I just am so scared of being let down again. But then Friday Vanderbilt called and I have a appointment there June 10. Wow just what I needed. Hopefully I can get some function from these great treatment centers. So I'm asking if you guys will include me in your prayers. I believe the Lord will guide me where I need to go. He has been with me throughout all of this and I know he will show me and be with me always. I am very excited but somewhat reserved. Stacy
  14. 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 still tired his best to treat me with whatever meds or other means.I have tried all of Mayos recomendations thru my doctor and they have said thats all they can do.I am waiting to see Dr Thompson in Pensacola but he is very sick also and it may be February before I can see them.Until then I am just here at a loss.I will travel so if any of you can recommend who you are seeing and if they are familiar with the POTS and or severe nausea.It seems my heart rate is under control with meds so I dont know if a cardio doctor could help but I would be willing to try.Thanks for any input.I just hope thru my prayers,faith, and family support there will be a better tomorrow. Buffy
  15. 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 courses of action. I have exhausted the use of zofran,tigan,and any other anti nausea drugs the docs could think of.None of these have given me any relief.Regardless of what has worked for you ,if you guys will please share them with me.Thanks so much.I do want to try to get better and get out of this bed,recliner and house. Thanks Buffy
  16. Hello, I am glad you did ok. Do you ever have any nausea? I am nauseated all the time. This has been going on for 2 years as I was recently diagnosed with POTS at Mayo Clinic. Can you tell me all of your symptons and the meds prescribed. Thanks Buffy
  17. Hello everyone I am new to this forum.I have been sick for almost 2 years.What started as shingles turned to extreme nausea,then to gall bladder removal,then to gastroparesis,then to inner ear,then wound up being diagnosed with POTS on July3,2008.The nausea has really never left me except for a few days. I eat when i can,which is usually only 1 meal every day or two that is usually thrown up with dry heaves afterwards for hours at a time.Throughout all of this none of the anti nausea meds worked.Reglan! Couldnt handle it uncontrolled shakes. Domperidone!Helped for a month! Just on and on with meds just like all of you have.Hopefully though with a diagnosis,now we can treat it with a Beta blocker cause the TTT showed increase heart rate.If i dont get better by Monday as far as fluid intake i may wind up with a feeding tube. I have been hospitalized but 7 or 8 times for hydration. My sister is a Nurse and gives me IV fluids at home. My mom takes care of my pic line that was removed a couple of weeks ago and now I may try the VAD. I am homebound and pretty much recliner bound because when I lay in the bed it makes me even sicker. I havent been out of the house in months other than on the deck or to Doctor Visits that aggervates my nausea due to the car ride and movement.We flew over 800 miles to Mayo for this diagnosis and the plane trip was horrible but I was ready for answers. Mayo said i should see some results with the Toprol within 1-2 weeks. Do any of you take this? Do any of you have extreme constant nausea? At what time of day do you take the Toprol,what does,and does it make you sick taking it on an empty stomach? This is my first post and I am glad I found you all! Buffy
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