A friend of mine with Fibro has most of the symptoms of Dysautonomia, so when she got shipped off to a cardiologist to do some basic heart function tests, she asked the cardiologist about this - he said he did not know what it was. (!!!)
Okay, maybe I have misunderstood this disorder and a cardiologist is not the best specialist to consult regarding Dysautonomia.
Those of you with this disorder, could you please advise me about this?
Thanks -
Tracy
Posted by pamyla (Member # 8575) on :
While it's true that a lot of doctors that treat dysautonomia are cardiologists, there are unfortunately a lot who really have no clue. Your friend's best bet is to pick a doctor who specifically treats for dysautonomia. Much like lyme, not every doctor has the knowledge to treat for it.
good luck, Pam
Posted by clairenotes (Member # 10392) on :
Tracy,
Sorry if this seems incredibly stupid, but is this not part of the lyme package? Would it not improve with LD treatment?
Claire
Posted by Doomer (Member # 11013) on :
I had dysautonomia that was finally dx by cardiologist at the Mayo Clinic of all places. After listening to the whole host of symptoms that I was presenting with he stated that my symptoms are consistent with Lyme disease and had I been tested.
I had been tested and the elisa came back negative weeks earlier. After coming home from the Mayo Clinic I did further research on lab test and had my local family MD order testing from Igenex with a positive Bb with Erlichiosis and probably Babs.
Dysautonomia is a part of the lyme picture!
Posted by Doomer (Member # 11013) on :
Good info on dysautonomia.
Posted by WildCondor (Member # 434) on :
A Cardiologist will do a tilt table test with isuprel challenge to determine if it's there. It's the only way to tell. DO a search on this site, type in NMH or Neurally Mediated Hypotension and you will have a wealth of information. Let me know if you are in NY, because I know an excellent Lyme literate Cardiologist. Good luck!
Posted by LookingforHope (Member # 9680) on :
Is you go to Dinet.org, there are stories, to what helps, list of doctor that treat dysautonomia, to suppotgroups, anf a forum. This would be a great place for you friend to look for information!
My Self I have POTS,NMS/NCS- (LLMD this this was caused by the Lymes, but there are many casues for Dysautonomia. The problem is it is much like Lymes in the fact there is little know about it, so you really need to find someone that treats Dysautonomia.
Hope this helps! Posted by trueblue (Member # 7348) on :
quote:Originally posted by WildCondor: A Cardiologist will do a tilt table test with isuprel challenge to determine if it's there. It's the only way to tell. DO a search on this site, type in NMH or Neurally Mediated Hypotension and you will have a wealth of information. Let me know if you are in NY, because I know an excellent Lyme literate Cardiologist. Good luck!
WildCondor, when I asked the cardiologist if he wanted to take my BP standing up he said, "Oh, it'll drop." (Oh, goody, it was 85/58 when I got there.)
Will anything show up on a stress test? I am wondering how I'll be, trying to walk on a treadmill, tomorrow.
Sorry for the hijack, Tracy, I'm wondering what to do with the cardiologist, myself.
Posted by Truthfinder (Member # 8512) on :
Thanks for all the input.
Wow, Pamela - I didn't know there were specialists just for autonomic disorders - thanks for the link. And thanks for the tip that not all cardiologists are savvy about dysautonomia. That was an assumption on my part that I should not have made, apparently.
Claire, my friend has no Lyme diagnosis, and no hope of getting one in the near future. It's kind of a complicated mess for her right now - too much to explain. But my thought was that you don't have to have a LD diagnosis to be diagnosed with dysautonomia, and perhaps get some treatment for it.
Doomer, that LymeNet thread link you posted was the one that got my attention about all of this in the first place. It was a great discussion with so much good info.
Thanks Ms. Condor - I was trying to remember what the main test was for this. Thanks for the search tips, too. For some reason, the terminology associated with heart problems just does not stay in my brain.
LookingforHope, that Dinet.org website does look like a great place for info. And more terminology I need to sort out.
**sigh** Looks like more reading is in order. Does it ever stop?
Trueblue, feel free to hijack my thread to your heart's content.
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