Racer Posted October 6, 2013 Author Report Share Posted October 6, 2013 Hey.. have you been to an immunologist? Since you have these usual bout of uti? I would think your pots is immune in nature? Hmn. I'm just thinking typing out loud.Good to know your not in so much pain anymore!No, but I really need to see one. I had a small bowel bacterial overgrowth also. I have been on antibiotics for almost two weeks now, and I was told it cleared up my infections. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted October 6, 2013 Report Share Posted October 6, 2013 Man, thats so weird! Please let us know what's the deal and please find yourself a doctor worth going to. Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted October 7, 2013 Report Share Posted October 7, 2013 Nobody even suggested anything like Giraffe's protocol? Would they or did they refuse to let you self-catheterize? . Quote Link to comment Share on other sites More sharing options...
Racer Posted October 7, 2013 Author Report Share Posted October 7, 2013 Nobody even suggested anything like Giraffe's protocol? Would they or did they refuse to let you self-catheterize? No, no one suggested anything like that. I am going to try to make a appointment with someone to discuss this all Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted October 7, 2013 Report Share Posted October 7, 2013 My PCP said that the only thing I could do was to keep managing it with absorbent products and wait to see if it goes away. That is what I have been doing for three months now, except for the one week I had the cath. The cath was a major relief, physically and mentally.Oh, Racer, how awfully irresponsible of them! This kind of thing makes my blood boil. If your PCP could live for a day with your bladder they would be trying a lot harder to find you some solutions. Yes, a neurogenic bladder is a neurological issue, but it is also a urological issue and any urologist should be able to consult with your neuro to find some better solutions. 'See if it goes away'. Yikes. Quote Link to comment Share on other sites More sharing options...
Racer Posted October 7, 2013 Author Report Share Posted October 7, 2013 So I just got a call from the urologist, who said that he got the ER report, and that I wasn't experiencing any urology problems, that I should follow up with my PCP. I dont understand how my problems could not be any more urology related. I just dont understand why I keep getting tossed around and blown off. Someplace on my medical records must be some big red text that tells all doctors to ignore me. Is it possible of having some big label on my records that is hurting me? I can't get copies of them because they charge a outlandish fee per page.I keep getting days or short periods that I feel okay, but I generally feel like I am continually going downhill. (TMI warning) I had to get up from typing this reply to go change my cloths because without any warning my body decided to poop. Seriously, what the heck is happening with my body? Is this even normal dysautonomia related stuff? Quote Link to comment Share on other sites More sharing options...
Racer Posted October 7, 2013 Author Report Share Posted October 7, 2013 Just tried to get a appointment with the PCP, and was told that he feels that he doesn't need to see me. I let the nurse I talked to know that I am done with those doctors, they are a waste of my time! So now I just need to find all new doctors. Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 7, 2013 Report Share Posted October 7, 2013 Racer- I hope you do find new doctors. What you have experienced is unacceptable in my opinion. Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 7, 2013 Report Share Posted October 7, 2013 Racer- can you go to a different ER. You don't have to take your medical records. Before I was diagnosed I went in to my local er several times. I actually finally got good help because I went to a great hospital's ER. It actually is over an hour drive but one of the best decisions I've made. You do have to be careful about when you go in as well. Sometimes it's more crowded and harder to get good help. Quote Link to comment Share on other sites More sharing options...
Racer Posted October 8, 2013 Author Report Share Posted October 8, 2013 KJay, no other ER around, this hospital covers a fairly large area. Unfortunately, if I need to go to the er, I dont have much of a choice were to go. Quote Link to comment Share on other sites More sharing options...
corina Posted October 8, 2013 Report Share Posted October 8, 2013 I'm so sorry Racer. Don't worry about the TMI, it is very obvious that you are having huge issues and this is the place you can come to to try get help, where people can relate to your problems. I've had incontinence problems too (though not retaining urine like you do) which made me feel very humiliated (wetting myself in front of our children and needing their help to clean up). I felt betrayed by my own body. Unfortunately no doctor was able to find answers other than "this must be a dysautonomia problem". When I started octreotide my dysautonomia got much better as did the incontinence problems. I truly hope that once you have found new doctors and a regimen to treat your dysautonomia things will get better for you too. Meanwhile try to hang in! Quote Link to comment Share on other sites More sharing options...
Racer Posted October 11, 2013 Author Report Share Posted October 11, 2013 Well, I found a new doctor (internal medicine), and I have a appointment scheduled with him tomorrow. But I live with my parents, they support me some financially, and they have "cut me off" with any financial help. Not only I cant afford copay for the dr, but I cant afford my medications. I already had to stop taking some of my meds. What hurts the most is that my parents think they are actually helping me, since they dont think I need to be going to doctors or taking all this medication. I guess I will be going without help for awhile Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted October 11, 2013 Report Share Posted October 11, 2013 TThat is amazing! Does he know about pots/dysautonomia? Did you call and ask If the doctor knows? I ALWAYS do that! I learnt my lesson, going to a gazillion doctors and being basically laughed at and told that I am just anxious. I really hope hes a good doctor. I hope things resolve soon. Quote Link to comment Share on other sites More sharing options...
aprilthames Posted October 11, 2013 Report Share Posted October 11, 2013 My dysautonomia symptoms reoccurred 18 months ago with vengeance. I have soiled my clothes and wet myself three times since....that doesn't count my frequent trips to the restroom. At 45, I am researching dysautonomia once again. I am a full time public school teacher that missed 6 days of work in one month. The cooler temperatures of October have been a relief, but I just keep drinking fluids and going to restroom! Since I've read several posts on this forum, I feel I need more sodium. I already have a can or two of condensed soup daily. I guess I need more. I am determined. I wish I could share my determination with the person who is financially hindered with an unsupportive family. My heart breaks for you. I just joined this forum yesterday...someone emailed me a 20 page PDF on NMS and POTS. It is full of great info. It is by peter c Rowe and is dated 2005. It is a must read. god Bless you all! April Quote Link to comment Share on other sites More sharing options...
Racer Posted October 12, 2013 Author Report Share Posted October 12, 2013 I had a long talk with my mom, and I got to this doctor today. WOW it was AMAZING! FINALLY, a doctor who wanted to really help me. He admitted he didnt know a whole lot about dysautonomia, that he has only ever seen it in a few of his patients before, but that he WILL find the doctors who do know, and send me to the hospitals who are able to help me. He said that I don't need to worry, that he will talk to all my doctors and set this all up. He will schedule the appointments and everything and that I just need to wait for him to call. I will be a bit nervous waiting for this call, but so far, this doctor seems awesome. Quote Link to comment Share on other sites More sharing options...
aprilthames Posted October 12, 2013 Report Share Posted October 12, 2013 Great news! One day at a time! Quote Link to comment Share on other sites More sharing options...
corina Posted October 12, 2013 Report Share Posted October 12, 2013 That sounds great! I can understand you being a bit nervous for this call, esp after the bad experiences you've been having but over all I think and hope you are on the right track! Quote Link to comment Share on other sites More sharing options...
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