Any One Out There Have Autonomia Systems Atrophy/systems Failure ??

[pooter18]

i gues the proper diagnosis is MSA- am looking for someone out there that has autonomia systems atrophy /systems failure that i can talk to to get some information from..i was just diagnosed with this 4 months ago..i have several things giving me problems...my digestion is the biggst problem at the moment i am on my second round of sitz marker pill test to check motility which is horrible..the first round all 24 were still in my colon not a surprise since i cant go to the bathroom even with tons of medications.. and so far with this second test all 24 are in my colon as well..go to the GI doctor thursday to decide what to do..i am looking for someone who maybe has already had this done and had to have surgery or another solution since that is what he has mentioned i will probably need.. ( either a colon resection or a colostomy bag)..and some honest answers of what is to come next..my cardiologist never discussed any of this with me and i dont look much up on the computer so i had no idea this could happen..i cannot find a specialist around me without driving a long ways which i cannot do..so if anyone out there is willing to talk to me and discuss their journey i would greatly appreciate it..thanks

i take meds to control my heart rate/ blood pressure at times runs high and then will drop really low so take meds to control that/ get IV's 2 times a week my kidneys dump a lot of my water i can fill up 2 of the jugs in a 24 hour urine test /nausea meds so i can eat several other meds they took me off all the laxitives since they were not working to do these test i do the extra salt G2 gatorade and coconut water for electrolytes my balance and vertigo/dizzyness has been severe lately as well will probably address that next after the stomach issue gets resolved i could go on and on but my brain fog is getting the best of me so enough for now-thanks

[SarahA33]

Hi Pooter18,

I'm sorry that I am unable to relate to what physical symptoms you are going through, but I'm sorry that you are going through a difficult period right now. I do, however, feel the same way with the dizziness and balance issues. It's really terrible. You aren't alone in this one! I have vertigo induced migraines. Those are tough!

I know you mentioned that you couldn't find a specialist closest to you, DINET has a section on their main website, http://www.dinet.org/index.php/index.php?option=com_physicianlist&view=physicians&Itemid=276 You can try searching here for a specialist in your area!

Take good care of yourself,

Sarah

[Sunshinegirl]

I don't have any solid information for you but I can say what I experience. For years I had virtually no ability to go to the bathroom. I had "gut rot" so I call it. Nothing worked so I went on a liquid diet and that helped. Then my small intestines decided to not process food but it did come out the other end not digested and in an uncontrollable manner...so back on the liquid diet. Then through trial and error, I found that I could eat a few foods and gain nourishment from them. I eat these few foods and get the rest from liquid nourishment. After much research and learning about gut issues I found that some people go on TNP for a while to give their gut a rest and the nerves get a chance to recover....then move to enteral nutrition which is a hypoallergenic formula and then add some foods back in. This seems like a better alternative to having a bag. If I were in your place, I would try these things first....after you get unplugged.

It took me years to get my gut to move again because the muscles and nerves had been out of commission for so long. They don't work great but good enough only if I am careful with what I eat and how much. I often get a swollen abdomen and have to stop eating chewable food for a few weeks and wait until the chaos passes. I have found that medication usually makes this worse, not better. When your gut is stopped up...medication can pile up in there and get to toxic levels depending on where it stopped. I have to have salty lemon water, senna (careful with the heart rate), no residue protein drinks, glucose... its more than that but its my own cocktail of things that keeps me alive while I wait.

Sorry I don't have great news for you...but its not the worst news. I would be cautious of someone who wants to remove your colon as the first level of treatment....maybe get a second opinion.

[pooter18]

i will definately discuss this with him thursday when i go..i am just so tired of not being able to eat or go to the bathroom that it is effecting my quality of life at this point..when it won't come out makes your body toxic and i am always nauscious..thanks

[Sunshinegirl]

Pooter,

So.. I get the toxic body and nausea. Totally! For me, it was when I stopped taking medications that I began to get better. This might not be the case for you. In my case, they were not being absorbed so they did not work. I was such a wreck that I had to have surgery to repair structures that had been damaged by not being able to go to the bathroom. I found that I had terrible issues with just about every over the counter medication and most prescriptions. I turned to ancient Indian solutions and found reprieve for a while. Senna is very helpful with motility and can be taken in a tea. then my small intestines went on strike for nearly 8 years. Then I was pouring out with undigested food. My solution to that was as simple as eating an avocado each day. I don't know what it is about this fruit but it was like a near instant miracle.

Now I follow a paleo diet and have an avocado and don't have to wear a diaper or wish I could go after 2 weeks of back up. I tested negative for all things that could be tested for in the GI tract. That does not mean that something is not there...just not testable. I figured all of this out when my young child was stricken with Inflammatory Bowel Disease. In the last year I have spent a minimum of 20 hours a week researching journal articles from around the world regarding bowel issues. The big lesson I learned was to fix the gut flora first and then work with the actual cause or you will be chasing your tail...or guts around. He is in remission and doing great on enteral nutrition. I had them pop a GJ tube in and worked wonders. He is healthy and strong compared to his counterparts.

So...back to etiology. I really think that many of my issues have to do with mast cell activation disorder. This has many of the same symptoms of IBD but without the internal blistering. In addition to doing a paleo diet, I eat mostly low or no histamine containing foods and never left overs. This means no processed food at all and as much organic as you can get. You have to get ahead of the pile up by using psyllium husk and senna plus a ton of water as soon as you have not passed stool in 24 hrs. The psyllium pulls in water but does not need help from your body to do so. Senna is a natural mover of things. The 2 combined are like a scrub brush for your guts. If you get the runs keep on with the psyllium husk but stop the senna. You have to keep a log.

sorry my spelling stinks tonight.

[pooter18]

i will definately check into all of this i wish i liked avocados may have to learn to like them...i will find out tomorrow more from the doctor but i will ask about the senna ..my small intestine seems to be fine..its the large intestine that everything backs up in..even when i drink a bottle of the magnesium sulfide for most people it works in 1 hour for me over 24 hours and that is combined with duolcolax also..and i usually have to do it 2 days in a row to get some relief..depends have become my worse friend LOL i hate them but i am so afraid if i am out in public which is rare anyway due to POTS and DYsautonomia that out of the blue it may decide to work and when it does i cannot control it..i will have to look that diet up as well..thanks for all the tips i will take the info with me tomorrow and see what he thinks..

[corina]

I have nothing to add but want to wish you well on your appointment pooter!

[dizzyallie]

Pooter, I feel for you, really do. I had exact same problem as you 13 years ago. So, had subtotal colectomy. Any questions fire away! Can sympathise what ur going thru x

[Arez2row]

Hi! I can really relate to your situation. I have AAG, from which I have POTs, gastroparesis, colonic inertia (the list goes on haha). I take meds for BP/HR, digestion, dysmotility, etc. I have done the sitz marker test with similar results. I have also fairly recently started IVIG with hopes of it working/slowing progression before further measures need to be taken for other issues (mainly the GI symptoms). I am new to this site- but if you want to I am more than willing to talk! I hope all goes well for you and best of luck!!