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Anyone have rapid autonomic dysfunction and lead to atrophy of bowel, gyn and bowel-in just 5 months?


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Anyone else have atrophy and anyone else have a med reaction or event that quickly led to dysautonomia with pots symptoms loss of sensation to pass stool, lack of engorgement and inervation, bladder changed and then have it lead to vaginal or penile shrinking/atrophy and neurogenic bowel as well as muscle atrophy and wasting rest of body? This began 5/15 when I started swish and swallowing nystatin oral suspension but had a horrible delayed reaction four days in. ANS already affected while still taking the med in first 8 days. 

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I have osteomyelitis (now labeled as chronic) due to a blood infection that moved to the L4-L5 vertebrae. Symptoms onset was in February, at which time I also lost some function of bowel and bladder. At first they suspected nerve damage at the spine however MRIs and CTs show no evidence of this so now they are saying that the osteomyelitis caused a worsening of symptoms. My drs are cautious on speculating recovery, if or when  it will happen, one Dr thinks that now we are getting over the infection we can work towards a "more normal life" and estimates it will take about 3 years. Another one of my Drs is unsure I'll recover and looking at autonomic failure dx. So don't really have any answers for you but wanted you to know you're not alone. I hope you figure something out soon!

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Hi Missy, yes I have some of what you describe. I have some answers already though after searching endlessly. I have POTS, autonomic dysfunction and syncope. When this all started (before I realised whatv its  was) parts of my body started atrophying and I have lost significant bulk in certain parts. Had every test for this, mris of all muscle , nerve conductions, emgs and even a muscle biopsy and my neuro keeps telling me this is something else. Still don't know what's going in with that side.

All autonomic stuff recently diagnosed and I found out a few weeks ago i have an autoimmune disease called sjogrens that goes for small fibre nerves. On this note I would strongly urge anyone who suspects this could be the reason for their troubles to pursue a lip biopsy. I have no indication in my blood and dry eyes and mouth came on much after the neurooathy. I went on about sjigrens for years and was laughed at and dismissed by rheumatology dept. Went private and got lip biopsy done and guess what.. .you know how it goes. My point in saying this is that we don't know for certain what's going on and I believe these professionals don't try hard enough to look most the time. I'm not dismissing the meds btw. Could they have triggered autoimmunity and if so what mechanism of autoimmunity is underway? 

I also have EDS and have lots of weird stuff as a result including cranial cervical instability I have just discovered this week. This can cause alot of problems and can compress parts of the spine which can then result in systemic manifestations everywhere. Again I raise this as had to figure it out myself. Alot of people with autonomic stuff have EDS. Not saying you do but so many of us eds people have it 

I have seen so many doctors and I started to realise my own knowledge was often far superior to most of them on all this. I accurately diagnosed all my conditions myself and then fought for proof. I'm still not entirely there with the horrible atrophy though,time will tell.

The reason I'm saying this is because if you are not long into this journey you will not believe the ignorance and lack of knowledge so many so called professionals have on this. You will have to research yourself, join groups and trust your own instincts. If you don't feel your doctor is trying everything to determine cause go find another one.

I believe meds are horrendous and can do these things but just look at all testing options if you can to rule out autoimmunity or genetic issues. I guess the reaction to some of these meds is a type of autoimmunity in itself sometimes 

 

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Missy there is a very good website called neurotalk. If you join that and continue to the sub group for peripheral neuropathy there are loads of posts on issues like this. Many were mine! There is some really useful information and guidance on tests to pursue with medical professionals. A number of people talk about toxicity issues causing rapid onset neuropathies.

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