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Diagnosed autonomic dysfunction - but now idea why

PostPosted: November 17th, 2015, 8:14 am
by Scaredlin
Hi everyone, I have been twitching for two years and I was just diagnosed with autonomic dysfunction. I have a lot of the same symptoms you all have - twitching, cramping, burning, etc. Normal EMGs. I am getting a skin biopsy on Dec 7th. Dr. thinks I have some small fiber issue.

MY neuro is not an autonomic guy, so I have to wait until December to meet with someone to interpret this, but I think it means I have POTS, if anyone knows what that is. I had a valsalva, deep breathing, and sweat test. Its called ANSAR.

"The resulting sympathetic to parasympathetic ratio was abnormal showing a marked adrenergic predominance. This patients blood pressure was stable with standing, but postural orthostatic tachycardia syndrome is indicated by the inappropriate decreased sympathetic response to standing as well as reflex tachychardia. This patient also had a paradoxical parasympathetic response to Valsalva and standing, with an increase in parasympathetic tone rather than decrease. Distal sweating was normal; proximal abnormal."

I have had a 1000 blood tests. I keep showing low complement c3 and c4 and anticardioplipin antibodies (which Ive had for years) and now antithyroglobulin antibodies. So it seems as if something autoiimmune is going on, but the rheumatologist wont make the call on any one disease. I have anxiety crawling out of my skin. I think thats because the autonomic system is fight or flite and b/c Im terrified they can't find why this is happening. It feels very hyperthyroid to me but again, western medicine says is your labs are in range, impossible (altough mine is super low normal 0.55). I have all these weird head sensations, feel pressure in my eyes, etc. Now, instead of ***, Im frightened of this other three letter disease multiple system atrophy that has autonomic dysfunction. I have swapped one for the other. I can't believe what my life has become in these last 2 and a half years. I feel so sorry for all of us. So very sorry. I just live for getting through the day and crossing another one off the calendar without increasing symptoms. I cant seem to get the reassurance I need. I have three kids who need me. Not even the pscyh meds are working on this which even increases my fears more that I have a degenerative brain thing. Sorry to be a downer.

Re: Diagnosed autonomic dysfunction - but now idea why

PostPosted: November 17th, 2015, 1:24 pm
by RIno468
Hi - I know its rough - we are all going through something similar.

I don't have any answers or any reassurances (how many of us really do?)

All I can say is to be patient - if you have been twitching two years and no loss of strength - it isn't *** so anything less (if it is anything less) is still a win.

Answers are forthcoming.

Re: Diagnosed autonomic dysfunction - but now idea why

PostPosted: November 17th, 2015, 8:12 pm
by Scaredlin
Thanks Rino. I thought it might help people to know there are other neuro diagnoses that don't deal with EMGs. Clearly I still don't know why I have autonomic dysfunction (yet), but other people may be in a similar boat.

Re: Diagnosed autonomic dysfunction - but now idea why

PostPosted: November 18th, 2015, 1:03 am
by Yuliasir
Scaredlin wrote:Clearly I still don't know why I have autonomic dysfunction (yet), but other people may be in a similar boat.

in most cases autonomic disfunction is a result of stress (acute or prolonged). People with connective tissue diseases (like EDS which is true for about 2/3 of the fellows here) almost always have that too. Cevical spine problems (bad posture), certain types of CNS nad mood tendecies (obsessive and anxious minds) are also prone to Autonomous system disfunction. All the rest, including conditions such as MSA, are at the end of the list (and in that case disautonomias are usually following motoric disfunction, not preceding them, and are pronounced and speciffic).

I read that up to 70 % of population in the industrialized countries has autonomous disfinctions. Well, considering the frequency of stomach reflux, heart palpitations, stubborn headaches seems to be quite true estimation.

I myself have it (paired to my EDS), so I know what is it.

I feel really disturbed because you switched in your fears from ALS to another really rare disease, MSA in autonomous form. Well, as far as I know, in this case autonomous disfunction has to be preceded by motoric symptomes clearly similar to Parkinsonism for about two years. This means rigidity, tremors, ataxia (difficulty to keep standing and walking position) etc. Also in this case symptomes are vice versa to yours - tachycardia in rest position and no pulse rate increas when standing, while you have pronounced ortostatic tachycardia. Unless you do not have this symptomatic constellation, I think, you should kick the thoughts about MSA out of your mind. Moreover, you have vice versa symptom - your adrenegric reaction is prevailing, while in MSA it is suppressed.

General idea of my post is to tell you that autonomous disfunction is quite common condition. it is especially common in our community where about 2/3 of people have connective tissue disorders (not life-theratening). Morevoer. it is expected to be deteced in 2/3 of people you meet daily in your neighbourhood. It does not mean you are terminally ill.

Did you speak about those findings with the doctor asking for explanation? You should not be left in desperate fears of various dreadful diseases, but because autonomous disfunction is so common, doctros often do not take a chance to say that to patient. You know, it is like caries - everybody have it, but seldom your dantist would take a 15 minutes lecture to explain you that this is not a dangerous or life therating condition (however it is not completely true to be honest).

Hope you could find right treatment (the fact that as you say psych meds do not help you means rather you were not given proper one. SSRIs are not the panacea, and if they do not help you, then your problem is not a cerotonine imbalance but something other and your doctor should keep trying and looking for proper dosage, type and regimen).

Have a lot of sympathy for your down mood condition,