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Avatar universal

Newbie here, value your opinions

I was diagnosed in 2002 with lupus and in 2008 had lyme disease. I am told these can both be triggers for autonomic dysfunction. I used to run a greenhouse business but had to close it when I began to have problems with my memory, couldnt remember how to run the cash register, credit card machine, make change, crazy right? I was having horrible problems in the heat blood pressure dropping and heart racing like a trip hammer and passing out. Closed up at the end of the season and never reopened. After that my health really never returned. I was very heat sensative. WHen I would try to go outside to work in my yard I would vomit, I spent most of my summer in the basement where it was cooler. In December I had surgery to have a rib removed that had a mass on it, after the surgery I spent 4 days hallucenating and unable to speak coherently. Aphasia was the word of the day I would get out about 5 or 6 words and forget what I wanted to say and start all over sometimes the same thing 10 or 12 times until someone changed the subject. They thought I had a stroke but MRIs were negative for that. I did some reading when I got home and found that general anesthesia can cause these symptoms in autonomic dysfunction patients. I went to my GP and told him and he agreed. Went to my neuro and he found a neruo that specializes in Autonomic dysfunction. I finally got in to see him, but I will not be able to start testing until next month.  My hands and feet are so numb I couldnt feel the tuning fork when he put it on them, I didnt know they were like that. Guess that could explain why I have been falling occasionallly, and dropping things. My husband kicked me out before the surgery because he was tired of me being sick all of the time and he said he didnt want to take care of me after the surgery. He never even called during the whole mess. I am going through a divorce and I suppose a diagnose of Automomic disfunction may actually be in my favor if such a thing is favorable ever. Does it sound to any of you as though that is what I have, I am sort of grasping at straws right now and waiting until next month for testing.
  Any thoughts you have are appreciated.
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Avatar universal
  I wanted to thank all of you who took the time to help me out on this posting. I guess it is customary to pick a  best answer and I am sorry if I am messing up tradition. I tried to pick one out and I couldnt. All of the answers were so valuable to me. Thank yo so much. This is a tumultuous time in my life and gaining a little bit of knowledge gives me some power over what is happening to my body at least  Testing comes soon so more knowledge, I will keep posting here and asking questions until no one will want to see my name. Thank you all.
Helpful - 0
612876 tn?1355514495
It's strange, you're sort of coming at this from the opposite side than I did, so in a way we're going through some of the same things now.  

I've been sick with this for nearly 5 years now ... August will be the 5 year anniversary of the onset of my dysautonomia.  I'd say it took about a year or a year and a half to have the basic outline of what was wrong with me, and we've been filling in the details ever since.  But I only just this year found out that I have the small fiber peripheral (sensory) neuropathy.  As I believe I've told others here on this forum, it was surreal for me because I've known for some time about my *autonomic* nerve issues.  I *know* all about small fiber peripheral neuropathy, the tests for it, etc., because I've given the information to others on this forum; when I sat there realizing that I couldn't feel things right ON MY OWN FEET, I was dumbfounded!!  How could I not have known?  Seriously, the doctor could have knocked me over with that little pin at that point!  

As for the skin biopsy, mine is scheduled for Friday.  I've told others about this time and again.  I've referred them to which hospitals can perform it.  I've read about it and the implications in my medical textbooks and in journal articles.  I have tidbits on it on the handy physician-reference app on my cellphone even!!  I felt okay (not thrilled, but okay) about it when my S.O. was going to take me for it, but my doctor had to move the test up to a sooner date and now he can't go with me.  Now I'm nervous.  I know it will be fine, but somehow it will always seem *more* fine when it's someone else's foot/calf/thigh and not mine!  :-p


The stroke-like symptoms you describe do concern me a bit ... moreso as a person who studied what I did in college than in my capacity here in the Dysautonomia Forum.  Strokes were one of the major topics we studied, and as I'm sure you're aware, they're nothing to mess around with.  I hope that you will consider calling 911 whenever you are in doubt about whether you might be having a TIA/stroke or not.  You have the right to decide not to take the ambulance to the hospital once they get there; there is no charge if they just come and check you out and leave.  Getting that professional opinion might save your life, and getting help on the way when symptoms first start is key in the event that things start to progress quickly and you realize too late that it is a stroke and are no longer able to use the phone to get help.

If you haven't seen it, you might want to watch this TED Talk by a neuroscientist who herself experienced having a stroke:

http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

I thought of it because she describes not being able to use the phone to get help.  Seeing her speech reminded me of how critical it is to get help as quickly as possible when a stroke starts.  As you've probably been told, those who have a history of TIAs are at increased risk for future TIAs/stroke so it's important to take any suspected TIA/stroke seriously!!


Sorry, I hope that didn't sound preachy.  I just really care about everyone here in our community and I want to make sure we all stay as healthy and happy as possible!  :-)


Let us know when you do hear back from the doc.  I'm glad your insurance is so willing to help you out; they sound awesome!  I hope your friend will come around eventually.  It can be hard for people to understand what they cannot see.  

Best,
-Heiferly.
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Avatar universal
  I think my Dr said he is waiting to see if and what testing had been done at the hospitals when I was in them at the end of last year since I could not remember. He had me sign releases so he could get the records. when I was so numb and didnt feel pin pricks and the tuning fork I guess he decided to go ahead and do the nerve conduction testing. I have to say that these are all totally foreign sounding test names to me and I keep forgetting them so please bear with me if I get one wrong. I have spent years with Lupus testing so am more familiar on that ground.
  I did happen to remember something today., Ha ironically I dont remember what made me remember. Today has been a really bad day. Yesturday was a incredibly busy day on ebay, spent most of it in front of the computor trying to type coherently and retypeing so that it didnt look like a dyslexic monkey had been at my keyboard. I had phenomenal sales and finally sent my last thank you at around 6:OOPM.  This morning I had to pack it all and print shipping lables and I was incredibly dizzy, my left side of m y face kept dragging down, not a new symptom but always unnerving due to the fact that I have had TIAs in the past and I never know if it is one of them starting or not so I do the ABCs and the grimmace test today it was just the lop sided face and the weak arm and leg thing. A couple of times sitting at my desk if I would move my head I would have the room spin out of control but it was so wierd because I had the sensation it was mostly on the left side that it was happening on.
  I took my stuff to the post office and mailed it and came home and fell asleep for 3 hours.I never do that in the day time. Woke up to my friend wanting to know if we were going to the coin wash to do my laundry. I said I felt bad and I could tell she was not on board with that. She is the one that was wanting me to go to church the other day, she does not get what is going on with me.
  Tonight I am just exhausted and have been so forgetful today that I shock myself. I did call the Drs, and she said she would call me back afteer she had spoke to him but I have yet to get a call sound familiar to anyone:?
  We have a NIN at our hospital so I would think I should be able to get a skin biopsy there. I talked to the care nurse with my insurance ans she said she would troubleshoot for me to get anything through that was nessecarry for my care. She is really handy. I think every insurance company should have this service for their patients.
  Thank you all for your input and your kind words, it has helped more than you can possibly know - I check here pretty frequently to see if anybody has posted anything so I can learn something new. Thank you all.
Helpful - 0
612876 tn?1355514495
It sounds as though at this point your doctor is focusing on assessing the presumed neuropathy.  There are different types/extents of neuropathy, and by using nerve studies to identify the type and extent of the neuropathy a physician can narrow-down the list of possible etiologies (causes) for it, as different disease processes lead to unique patterns of nerve damage.

Here is an excellent excerpt from an online medical article that describes the different types of neuropathy (following which I provide the link to the entire article):

"Neuropathies may be proximal or distal, focal or diffuse, small fiber or large fiber. Symptoms that may be present with large-fiber neuropathies include weakness, muscle wasting, and deficits in proprioception, deep tendon reflexes, and vibratory sense. A-delta fibers may be affected, resulting in deep seated pain, numbness, and impaired cold perception. Effects of C fiber dysfunction include spontaneous pain (which is often described as a burning sensation), allodynia (interpretation of nonpainful stimuli as painful), and hyperalgesia (interpretation of minimally painful stimuli as being excruciatingly painful). This is followed by decreased sensitivity to light touch, pinprick, and heat. Small-nerve-fiber dysfunction usually precedes large-nerve-fiber damage and is manifested first in the lower limb. Small-fiber neuropathy also occurs in the autonomic nervous system. Dysfunction of autonomic small nerve fibers can cause motility problems in the gastrointestinal tract, as well as delayed gastric emptying. Orthostatic hypotension, resting tachycardia, and cutaneous blood flow dysregulation are common cardiovascular irregularities. Abnormalities such as impotence in males, unawareness of hypoglycemic states, impaired sweating, and decreased bladder tone may be present."

http://www.medscape.com/viewarticle/426917


I would guess that your doctor is planning on doing nerve conduction testing and EMG.  This may be followed up by a skin biopsy which can further assess small fiber neuropathy, but this may depend both on whether a skin biopsy is warranted and whether it is available at the facility; this test is available through a limited number of hospital systems in the US.  

It is unclear to what extent your doctor intends to do tests that address the autonomic nervous system specifically, at least from what you are reporting of what your doctor has mentioned so far.  The RR interval you mentioned is also known as "heart rate variablity," and this is usually studied as part of a comprehensive autonomic workup.  However, there are a several other tests that generally comprise the core of a basic autonomic workup; additional tests may then be added from there depending on what is indicated in that patient's particular cases and what the hospital's facility offers.  

It's possible that your doctor is taking a conservative approach and starting with just a few tests to get a better idea of how to proceed (sometimes this may be due to insurance restrictions as much as anything else), that your doctor is limited in part by what tests are offered at his/her facility or in your geographic area in general, or that you simply haven't been given a comprehensive list of all of the tests that are scheduled.  As SurgiMenopause wisely suggested, it may be helpful to give the office a call and see what they say.  

Best,
-Heiferly.
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875426 tn?1325528416
Hope you did well on e-bay!  Look forward to an update on the dr. thing.
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Avatar universal
  I will post after I have talked to the Drs office tomorrow and have found out something. Today is a super busy day on eBay so I will sign off for now, I have about a dozen auctions maturing and there are usually shipping questions to answer thank you so much you are very kind to reasure me. It is helping me in some ways. :)
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875426 tn?1325528416
I don't like the bolus IV drip- makes me shake.  It sounds like you definitely should call the doctor then.  You might make a point of requesting test day consolidating with the office.  And yes, gas is expensive- again.  That squeaky wheel often gets the grease.  Glad you have a hobby you enjoy!  Let me know what the doctor office says?  
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Avatar universal
It probably doesnt sound like it here, but I do have a very lively sense of humor, everyone says so. I have a son and daugher in law and grand children that are good support. I do have a good relationship with God he does not care I dont come to his house he is in mine all of the time.
  I have had low potasium and low sodium in the past in blood tests. When my blood pressure goes way low I load up on salt to bring it back up, usually takes about 2 hours sometimes more. WHen I was in the hospital it went down to 65/40 one day and they had a fit I told them it did that some times and they said well not here and pumped fluids into me fast.took forever for it to go back up. I requested salt and a nurse fianlly brought me buillion and it went back up about a hour later. At least it is documented.
  I think you are right I will call the Drs office on monday to remind them I am still hereI was there the 9th so that was not that long ago really but it doesnt hurt to squeak a bit. It is a hour to where testing will be done so if theycan consolidate it all on as few a days as possible that would be great to, boy gas is expensive anymore.
  I run online vintage jewelry businesses from my home so I stay busy during the day and I interact with customers. I visit antique malls to find sellable material because I cant do auctions anymore, too much noise and activity. I have made friends at the malls with owners so I do get out but just in quiet ways, but nice ways I enjoy and for short spurts of time. I also go to the post office almost every day to send off packages. It works for me at this time in my life. Jewelry is interesting and beautiful and I am always learning something new about it. Which keeps it exciting. My husband continues to hold my Bowflex hostage along with most of my other possessions. Bah!
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875426 tn?1325528416
RE: pharmacy, you might consider a 24-hour pharmacy- Walgreens can be one- don't know if you have that kind where you live.  Also, you might find out if your HMO has a mail-order pharmacy for any maintenance medications, if you are on any longer-term.
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875426 tn?1325528416
I am wondering too if you had potassium checked, to see if low as well as sodium level in blood?  And what about kidney function testing?

I think it sounds like the doctor was on the right track of being concerned enough to get records, though wonder about the "limited" nerve conduction studies- hope it was "limited" to all limbs having problems?  And what about blood testing?  I have an immediate family member who was tested for things other than diabetes regarding peripheral neuropathy... things known to cause it.  They found MGUS, which can potentially change to multiple myeloma, though a bone marrow biopsy proved no cancer.  F/up is scheduled on this.

Also, if it has been 2 and a half weeks or more than your appointment (written on calendar?) and you haven't heard back from his office, I recommend giving them a reminder call so you don't fall through the cracks.

People with dysautonomia are often misjudged as their symptoms being caused by anxiety.  You are demonstrating that the isolation that can happen from limitations can cause people to think you are depressed, lacking interest in getting out and doing things.  It's unfortunate, but hopefully you will be able to patiently explain to them you are disabled when they come to an erroneus idea.  

And physical disability with isolation can lead to depression, so it's important if that happens to you, and if you are a Christian, that you look to the Lifter of your head, the Comforter of the depressed.  Also, it's important to do things that help with endorphines- a recumbant bike might be do-able for example, and laughter, as well as having family to hug.
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Avatar universal
  I actually answered this but keep having internet connection issues and lost the answer when I went to  post it. He is going to do the following things, he wrote them down for me because he said he could see I was havind memory issues.  He was going to obtain my labs from the 2 hospitals stays I had spent at the end of 2010. to see what if any tests I may have had for autonomic syndrome so he didnt do any repeats then hw would call to set up further testing for auto nonomic syndrom after he had reviewed my past testing. He was going to be out of the office for a week or two so who knew how long it would be...
  While I was there they set up electrodiagnostic testing with R-R interval testing and limited nerve conduction studies. That is where I am so far with the new neuro. What do you think? Is he on the right track? seened to me like he was at least interested and it seemed he felt my GP was correct in his suspicions of autonomic involvement. Thank goodness someone finally came up with the correct idea somewhere along the line.
   Thank you for your input It really helps, I have had soooo many people for so long now say to me, you look okay to me do you think maybe you are depressed? That I just want to hit someone sometimes Waht are they thinking the ignorent morons why in heavens name would I cease doing so many things I just flat out love unless it was simply needful, yet when I see them I am so happy to see them and beg them to come and see me in my home, that is not a depressed person that is a person in prison because of circumstances. I just came back from shopping WalMart in the early AM because it is too busy any other time, it is a ghost ship when I shop there. fast check out,hard to make connections with the pharmacy though. Thank you for your help.
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875426 tn?1325528416
Saw this answer second- glad about the addison r/out.  Re: your other post, just because the doc had another pt. w/lupus where they worried about MS, I hope he hasn't decided not to practice due diligence in ruling this out, given your symptoms.    

Did the neuro w/tuning fork follow up with an EMG & blood testing, like he should have?  
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Avatar universal
  I dont have diabetes, was tested, when I went to the new neuro seemed to me I might be a pretty good candidate for neuropathy. When he put the tuning fork on my feet, hands and face I was amazed that I could hardly feel them buzz. Might be why I am falling so much, and am dropping things. a few nights ago I was sitting on the floor for about a hour cross legged and when I went to get up could not. My legs would not work they were just non functioning and numb from the knee down. scared the heck out of me. My phone was on the edge of the desk and I was able to get a tablet and knock ot down , my sons cell phone was off, daugterin laws also, and my best friends. I finally was able to pull myself into the living room and up onto the couch, that was very hard took forever. They make it look easy in the movies far harder in reality. When the feeling came back into my feet and legs I thought I would loose my mind, I have never had anything like it only vaugely similar to the pins and needles when you feet wake up after being asleep more like 20x's and electrified hope it never happens again. It lasted for ever. I dont think I will ever sit on the floor again.. The mass was not cancerous, but oddly enough it is now3 months after the surgery and I am starting to have the same symptoms again. I dont think I was dehydrated, because I always kept water in a refrig in the greenhouse to guard against that, I was on Topamax for seizures and needed to keep hydrated to guard against kidney stones. I think I remember the endocardologist testing for Addisons and all was okay.
  My husband is a selfish person and I am better without him He put a lot of stress on me simply by being angry at me all of the time for being sick. I had hoped the illness would improve simply by having the stress relived but that has not been the case unfortunately. I however feel better mentally not having him constantly picking at me. Thank you for yourthoughts It has given me some things to consider also. If you think of anything else please let me know.
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875426 tn?1325528416
I believe I've read that some get a kind of de-nervation with dysautonomia.  Have they checked you for usual culprits of neuropathy?  No diabetes, multiple sclerosis (MS), MGUS or multiple myeloma for example?   Was the mass cancerous?  I'm sorry your husband was not willing to stand by you in sickness and not just in health.

The blood pressure and pulse in the heat & passing out sound like they could be dysautonomia, unless you were dehydrated at the time?  Have they checked for Addison's disease?
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