kim5204

I was told its a nerve problem not muscle heart problem so its the brain misfiring signals. excercise didnt help me so I gave up on it.

I caught a virus coughing stuffy nose. I noticed my heart rate is really high 120-130standing. does anyone else find this happening with colds or viruses.?

I am on new Zealand colostrum and have noticed some difference however my digestion is still bad hoping ivig will help a bit.

what made you decide against ivig? if you dont mind answering

thanks

thanks for the info.

the canadian system is different the government pays for this so I think they fill out form send it to government and they set it up. I hoping to here in the next few weeks when it will start. he also said 50 percent chance showing up in ana bloodwork. he is also sending bloodwork to the us for some more ana panels.

thats interesting maybe I will tell them to do it slow for the first treating. I wonder why this isn't proscribed more often if it seems to benefit.

thanks hoping to hesr from some people who may have information. just patiently waiting for the process to start.

I just got back from london, Ontario and saw neuromuscular doctor and he feels my dysautonomia is possibly autoimmune related and is ordering 6 months of ivig treatment. wont be set up for a c ouple months. has anykne had this frr aautonomic neuropathy? and was jt successful?

He sad that he has patients respond to this treatment, and that half of people dont test positive to ana. praying that this will help me.

he is hopjng for the low blood and tachyardia will get better. He wasnt that confindent that the gastroparesis would get better but fingers crossed that it does.

happy with the visit and looking forward to starting ivig soon.

kim

july 31st is the date for seeing neuromuscular doctor, autonomic specialts.

I am off to london Ontario for somre testing going to speak with specialist. mention floating kidney see what he thinks. I do have many problems besides the floating kidney. let me know what you here too.

what is thd name and number of the docotr that thinks it causes all the problems I am going to shown this to my gi. thanks.

let me know!

I am having all the same symptoms will bring this with me to the appointment. thanks how soon are they doing surgery?

I still get high heart rate even at rest though so I dont know what to think but in am gojng to mention it to the neuromuscular doctor the end of the month. my gi and primary and internalist dont think it could cause problems but I would lkke for them to put it back where its suppose to be it sits on my bowel on the ultrasound.

they did a standing lying down ultrasound and my kidney was normal lying down dropped standing. but I am traveling to london Ontario for ttt, valsalva breathing test, qsart the end of the month. let me know I cant hold it up very good.

please send me a message because I have the exact same thing when I lay on my left side you can feell it pop ovrr and laying down it goes where its suppose too standing up drops but it almost feels like it sits sideways when I stand. I am interested in what happens my doctors thought I was crazy to think that it could cause problems it hard for me to hold up though. I also have gastroparesis too though.

let me know please my doctors dont think it could cause symptoms othet than pain if it gets kinked.

yes I can see it and move it and th the doctors can feel it too. I am skinny but I am ondering it it could be putting presure on a nerve or blood bessel same symptoms as you. diagnosed with ultrasound standing. I do have elevated proteins in my urine but they never say anything about it.

I have thd exact same story my right kidney drops in my lower abdomen when I stand up, I was told it would not cause these symptomsbut will bring it jp again I have a ffloating kidney it came on a couple years ago. its a major surgery to put it back though. keep me posted kn the outcome please.

the doctors were the problem they have never seen a case and are completely useless to me until my gi sent me to a neurologist thankfully he picked up on all the problems. I live in canada and we are short doctors where I live and I cannot find another gp in in my are, frustrating. sorry everyone is having these problems too. i like being able to communicate with everyone else.

thanks for the info alsowho test for mitochondrial diseases, mast cell diseases?

thanks kim

yes I have been checked for autoimmune, lymes everything. all negative. I did find that swimming helped even before I got the diagnoses. frustrarting I donr know if I couldbe aspirating causing breathing problems definitely the hardest partnis accepting I cant bethe mother I want to ve to my childetn, running around playing, camping breaks my heart.

I have had every test cat scan, hormones, ekg, heart monutor, endoscope, colonoscopy, small bowel follow through, cortisol level checked cant have mri because of nj tube flipping, autoimmune testing. they cant find what is causing it. I have tried propulsid, florinef, restotran, domperidone, all mess my nerves up worse. I am doing hydrayte salt, water mixed in formula to keep my blood voljme up. love having this form my neuro has never seen a case. nice to talk to others with similar issues. I am in Canada and they dont have facilities to test this up here. funny I went on amoxicillin fof an infection and symptoms got much better on them was tested for lymes blood and spinal fluid came back negative makes me wonder though. thank kim

I have to make my own formula up I take organic baby formula and mix it with protein powder, add some hydralyte, salt water and have this during the day and run fluids salt at night. I cant handle sugar jn the formula they have for j tubes, it makes my symptoms so much worse. I take a multivitiam, calcium, b 12 too. everytime is was hospitalized they would hook me up to saline and with in hours of bei ng off I coulnt stand up striaght heart would beat outof control so this is the only way I can keep my blood volume up enough to even tolerate the feedings. I have another meeting tuesday wi th surgeon to decide on j tube peg j not looking forward to it. kim

I am new here and wondering anyone else with autonomic failure have a feeding tube or ivs and how long have you had them. I have nj tube wiaitng on a j tube and have tacyardia low blood pressure. does no ndurologist where I live has ever dealt with this type of autonomic failure and would like to know more aboutlong term survival with feeding tube I just turned 30 and have two very young childern any advice would be really appreciated.

I have actually used electric accupuncrure for my gi problems and it was a great help for me for 6 months until all my nerves quit working. I hadca great accupunctureist.