pure autonomic failure-anyone out there ??

[tamara j]

I am 52 was first diagnosed with pots about 10 years ago went to mayo at that time not much was known and so I felt more like an experiment which was fine they have to start some where..i am now being told I am in pure autonomic failure..1 1/2 years ago i had to get a colostomy because my motility in my large bowel had basically stopped I had no sign of the nerves and muscles in my rectum and pelvic floor working and could not go to the bathroom on my own I spent 9 months a Kansas University Hospital doing test and being a research subject for them (gave my approval) worse 9 months before they placed the bag.....then instead of being in constant tachycardia I also started having bradycardia and 2 months ago had to have a pace maker placed..i still monitor my pulse and take medicine if running to fast.. I also take midrodrine due to low b/p and have to watch that as well..it has also moved to my bladder and I have terrible spasms due to the nerves and muscles there as well and take a medication to numb my bladder when I feel like I am having labor pains and cannot even stand..my appetite is nill..nothing sounds good and when I make myself eat my stomach hurts due to slow motility there as well they are talking about putting a pacemaker in my stomach to help with digestion..has anyone had this done and did it help with the appetite, pain,nausea etc.???? my legs from my knees down are numb and tingle neropathy  and circulation is horrible..i get iv's done once or twice a week depending on how I feel and my b/p readings does anyone else get extra fluid ???...oh and lets not forget the brain fog I feel like I have the knowledge of a first grader and I do not like to go out in public because if someone starts talking to me I trip over my words or can't think of the words I want to use and feel ridiculous..my balnce is horrible I have to constantly be on guard to stand and look straight ahead because as soon as I turn my head or even slightly turn around my whole world spins and I have fallen several times..i  don't go anywhere that I cannot hang onto a cart if I even get out..i am looking for someone else with pure autonomic failure/possibly MSA so I can compare what you have had done or have been told anything to help me and I will try to help you as well with what I know.. they are going to do some testing at some point to see if it has progressed to MSA but I want to heal and get some strength back if that is possible first..i have no energy or strength or stamina ..I feel like I am on a downward spiral even though every morning God lets me wake up I fight this and with it being rare I can't seem to get any straight answers out of my specialist or they just don't want to tell me..thanks..everyone have a great day !!!!!         there is so much more but I condensed it as much as I could

[Mr. Rhaney]

Have you found out anything? Your symptoms sound very similar to mine. No diagnosis as of yet.

[Debbie Rose]

So, just a question-have you been ruled out for MS? Multiple Sclerosis? or any other myelin degenerative disorders?

Debbie 

[JSax_CM]

On 10/13/2017 at 6:10 PM, tamara j said:

I am 52 was first diagnosed with pots about 10 years ago went to mayo at that time not much was known and so I felt more like an experiment which was fine they have to start some where..i am now being told I am in pure autonomic failure..1 1/2 years ago i had to get a colostomy because my motility in my large bowel had basically stopped I had no sign of the nerves and muscles in my rectum and pelvic floor working and could not go to the bathroom on my own I spent 9 months a Kansas University Hospital doing test and being a research subject for them (gave my approval) worse 9 months before they placed the bag.....then instead of being in constant tachycardia I also started having bradycardia and 2 months ago had to have a pace maker placed..i still monitor my pulse and take medicine if running to fast.. I also take midrodrine due to low b/p and have to watch that as well..it has also moved to my bladder and I have terrible spasms due to the nerves and muscles there as well and take a medication to numb my bladder when I feel like I am having labor pains and cannot even stand..my appetite is nill..nothing sounds good and when I make myself eat my stomach hurts due to slow motility there as well they are talking about putting a pacemaker in my stomach to help with digestion..has anyone had this done and did it help with the appetite, pain,nausea etc.???? my legs from my knees down are numb and tingle neropathy  and circulation is horrible..i get iv's done once or twice a week depending on how I feel and my b/p readings does anyone else get extra fluid ???...oh and lets not forget the brain fog I feel like I have the knowledge of a first grader and I do not like to go out in public because if someone starts talking to me I trip over my words or can't think of the words I want to use and feel ridiculous..my balnce is horrible I have to constantly be on guard to stand and look straight ahead because as soon as I turn my head or even slightly turn around my whole world spins and I have fallen several times..i  don't go anywhere that I cannot hang onto a cart if I even get out..i am looking for someone else with pure autonomic failure/possibly MSA so I can compare what you have had done or have been told anything to help me and I will try to help you as well with what I know.. they are going to do some testing at some point to see if it has progressed to MSA but I want to heal and get some strength back if that is possible first..i have no energy or strength or stamina ..I feel like I am on a downward spiral even though every morning God lets me wake up I fight this and with it being rare I can't seem to get any straight answers out of my specialist or they just don't want to tell me..thanks..everyone have a great day !!!!!         there is so much more but I condensed it as much as I could

I just got my PAF diagnosis yesterday. I couldn't get a straight answer from that specialist about anything. My medical chart is over 24,000 pages with allegedly over 80 individual diagnosis. I feel everything you mentioned, but I have a whole lot more. Severe joint, muscle, connective tissue issues, headaches, titanium plates and screws in my spine, I have two spinal cord stimulators, one for about waist down and the other covers like my waist to my armpits. They won't do a 3rd for the damages in my shoulders or the neck pain that spreads across my shoulders up the back of my neck and spreads into my temples as a non stop 24/7/365 headache. I literally hurt on a 1 to 10 pain scale around a 8½ or higher constantly and it covers about 80%-85% of my body. Mayo clinic doctors want me on cannabis with higher THC, but regretfully ALL FORMS of cannabis if illegal in Texas. They are scheduling my to go to the University of Texas Southwestern Medical Center in Dallas Texas. They are allegedly the leaders in PAF, MSA, Parkinson's and that whole area of Neuro studies, specialties and so on. So I'm going to go once I get the call and see what they can do. So no you certainly are not alone and I pray you don't feel like I feel. To wake up every day is a nightmare. But I do it for my children. They deserve my effort.

 

 

 

[Roxy]

Have the doctors considered dronabinol/ marinol fda approved medicine THC legal with medical prescription in USA, you said they want you to use marijuana/cannabis.