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kim5204

New Here Recently Diagnosed Pure Autonomic Failure Looking For Other People.

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I havd been very sick since the birth of my second child 3 years ago. I am waiting on a j tube have had a nj tube for a while, I have pure autonomic failure and would like to talk to othrs. I have been getting weird symptoms lately that have nd concerned breathing has been very bad lately andi have been having tremor in my right hand. does anyone else have symptoms like this and I shojld mention I just turned 30. thanks

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Hi Kim,

Welcome to the forum. Sorry to hear what you are going through. I have a son that has POTS. He was diagnosed back in 2011 and was bed ridden for several months. He had some breathing problems in the very beginning, when he was in the hospital. He was never diagnosed with pure autonomic failure, but in the beginning it was pretty rough. He does have tremors and has had them for a while. His cardiologist started him on clonidine to see if this would help. It has helped a little but not a great deal. Keep posting your questions. Have they checked your hormone levels? There was a post on this subject a couple of weeks ago. Hormones can cause strange symptoms.

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Oh Kim, I'm so sorry you have all these problems. I have autoimmune-related autonomic failure. There are so many symptoms that everyone with any type of AF experience, it is overwhelming. I also have occasional tremors in one hand or another - I get transient numbness and tingling in my feet, or one foot, or hands, etc...I also have almost permanent numbness in the left side of my face. When the nervous system is under attack, there are just weird symptoms and problems related to the particular area that is taking the hit. The breathing issues usually come from poor circulation and perfusion to your chest and upper body. It kind of feels like the breathing is restricted - something tight around the chest that is preventing you from breathing well. Some relief can be obtained by taking a recumbent position - like in a recliner - this allows for more blood flow to the chest. Others say that abdominal compression garments help by keeping the blood vessels from being so floppy in your abdomen thereby pushing up the blood to the chest, neck, and head. You may also have chronic neck and shoulder pain for the same reason. I wish you the best in your treatments - I'm close to having some type of feeding tube as well - gastroparesis is a real problem for those of us with AF. This forum is a great place to learn about the various types of AF and also to help realize you are not alone in your struggles.

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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

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Have they checked for any autoimmune issues or virus running loose in the system? It sounds like an area I would want to explore if the amoxicillin helped. Might want to look at old post on lymes disease. I know that topic has been brought up on the forum.

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VERY sorry, its a difficult challenge.

May I suggest swimming? Its antigravity aerobics, plus pressure on your body, and the coolness seems to shrink

near surface vessels.

For me its a miraculous therapy that last for HOURS. I dont have your similar condition, but i believe this is a universal

nervous system aid.

Swimming, klonapin, hyper hydration, gatorade, salt, sleep, vitamins, enzymes, NO MSG, no diet soda all help.

For many of us keeping cool or cold makes a huge difference also. A 60 degree room with blankets at night may

make a big difference.

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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.

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Have you found a good doctor to help you with your medical condition. Some doctors just don't want to go the extra mile. That was my problem in the very beginning with my son. I can understand your frustration of wanting to be able to get up and go. My son has been bound to a wheel chair since January. Are you able to work with any therapist like occupational or physical? When my son was at his worse, our family doctor called home health care to come out. Our insurance picked this up and he was able to work with a physical and occupational therapist. This helped him become more functional. I had to concentrate on things that my son could do. It was a very slow process after he went totally down (bedridden). Concentrate on yourself and take one day at a time. Having a good support system helps if you have children to take care of. Hang in there and concentrate on what you can do to make yourself better.

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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

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For mito diseases a neurologist or genetic doctor can run the test. My son was checked for this and it was negative. For mast cell disease, Dr. Afrin in the USA is tops in his field. However, if you can find a hematologist (blood doctor) or a true immunologist, they should be able to check for mast cell. Have you been to see a genetic doctor?

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Sorry to hear of your diagnoses. I am going to Vanderbilt in July in hopes to find out what form of dys. I have. My dr.'s have mentioned PAF and Shy-Dragers. I too have gastroparesis. In a horrible flare. Seems I am in a flare all the time. Pain and nausea just keeps getting worse. I have the numbness in my arms and hands, if I sleep on my right side my left hand and arm will go numb. I get very shaky sometimes too. Not to mention trouble breathing and lots more stuff that makes no sense.

Hope some answers are given to help you.

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