Autonomic Testing
 

Well, I saw Dr. Khurana yesterday for my second appointment. He gave me another exam and went over my medical records from the past two years. He says that my pupils react slowly to light, that my blood pools in my legs and that my mouth and eyes are dry and he noted that my skin biopsy showed SFN and that my gastric emptying study showed gastroparesis.

He is scheduling me for autonomic testing: Tilt table, blowing into a balloon, QSART and BP/Pulse analysis. This is great news to me as I have not had this type of testing and I have had symptoms for 17 years. I am concerned about going off my medications prior to the testing. particularly the Verapamil.

Interestingly, he told me that he did have a patient that had symptoms of dysautonomia but had a negative skin biopsy. He did proceed with a QSART and that test was positive. Apparently, dysautonomia can be present without having a positive skin biopsy for SFN.

Can someone tell me of their experience with autonomic testing? And, if the tests are positive will this be diagnostic in terms of why I have SFN and AN?

Mere

Hi, I too have had a ton of symptoms (fainting, migraines, bloating, nighttime itching, spaced out feeling, chronic fatigue, mouth sores, blah, blah, blah..) for almost 15 years and the only real test I have had is the TTT, which really wasn't that bad at all. I wish I had more answers for you, but I have a question. I am going to see Dr. Khurana next month (after waiting 5 months). I cannot wait! Can you tell me if you were happy with him? I am hoping and praying that he will find out why I am this way. I have yet to find a doctor that is really knowledgeable about autonomic disorders (other than Peter Rowe at Hopkins - who is AWESOME, but won't take adults) and I am really excited about my appointment. Any advice would be great. You could email me directly if you want. THANK YOU!

Hi Mere

I had the autonomic battery, including the thermoregulatory sweat test (flunked totally) the tilt test (passed out) valsalva (cardiac innervation issues), QSARTS (abnormal) any way, I had this done BEFORE they did the skin biopsy. The found a lot of abnormalities and that prompted them to do the skin biopsy.

Autonomic issues can result from other things than PN, but I think PN is usually the more common cause.

I did not get any answers as to WHY I have PN. I still don't have what I think is a satisfactory reason. The WHY question is a quandry that plagues most of us.

There's also the definitive diagnoses of the cause, that you don't agree with, it is just one factor of the cause, & probably exacerbated the symptoms - but the docs stop looking because they've 'solved' the problem.
I swear I had symptoms waay before I started to drink and was drinking to Rx myself cause the HMO docs hadn't helped.
When I finally was able to get a proper Dx from a good neurologist, that was the pigeonhole that I got stuck in.
'AN' alcoholic neuropathy - go no further, problem solved!

Thanks Bob, I have also found over the years that Docs like to 'pigeonhole' me also. With me it's fibromyalgia. Yes, it is a possibility, but I usually have an increased sed rate and C-reactive protein. From what I know, FMS does not cause inflammation, nor SFN. Oh well, just an easy out for them ... I guess.

Good Lord Cyclelops, you certainly have autonomic dysfunction, no doubts there - yeah, I know, how profound...duh.

It just gives me the willies though to think that they will not have any answers for me... How can I correct the problem if I don't know the reason? You are right in that I am not the only one in this quandary. Maybe there are no answers for me. Seems like someone would know after all this time.

Mere

TinaG, I have seen Dr. Khurana twice. He seems like a good doctor in that he spent lot of time with me going over my history. He also does a lengthy exam. I will not have a true impression of him until he concludes the diagnostic part of my treatment. In other words, will he drop me like a hot potato if the tests do not show what he is looking for, or, will he sincerely try to help me and not get frustrated with me. This is the make or break as far as I am concerned in a doctor/patient relationship.

One thing that I dislike is the appointment scheduling. Both times I have seen him, my appointments were changed - usually on short notice too. Also, bring a book - he tends to run late.

I think you will like him. He is pleasant, seems very knowledgeable and professional.

I also have an appointment at Johns Hopkins (Dr. Sumner) next week. My regular neurologist made the appointment for me because they were originally able to see me sooner than Dr. Khurana. Of course that changed because I saw Dr. Khurana much earlier than my originally scheduled appointment. I think I will keep the appointment though. Can't hurt to have two opinions.

Do you live in the DC area? I am outside of Annapolis.
Also, does autonomic dysfunction result in itching? I have had intense itching requiring Benedryl when I have been in a bad attack - never knew it was a part of the syndrome.

Best of luck to you,

Mere

Mere, thanks for the infor about Dr. Khurana. I have researched the heck out of him and he seems like he knows alot about autonomic disorders, which I am convinced I have. Right after the birth of my 2nd child, almost 11 years ago, the migraines started. (And have never stopped) The itching - yes - it is terrible! That was my 2nd symptom. It only happens at night and I swear I could scratch myself until I bleed. The only relief is an allegra or claritan before bed. It is usually just my feet and lower legs, although sometimes it is other parts. It is like an itch that comes from inside. It is horrible. i have had test after test and a couple of surgeries, but really, everything always comes back normal, except for my TTT, which was borderline for POTS. However, after speaking w/Dr. Rowe at JHU (HE IS AWESOME) , he looked at my results and said coupled with the my symptoms, I am "posty". He specializes in pediatric chronic fatigue, but my doctor recommended that I contact him (my fatigue sucks!!!) and he called me back within a day. I live in Forest Hill, just north of Towson. I hope Dr.Khurana can figure me out. I am 43 and look healthy but I feel like crap. Thanks again - keep me posted!

Mere, I forgot, there are a few good sites for autonomic disorders. Check out DINET. Or just google itching and autonomic disorders and you will be shocked at the number of symptoms. Remember - our autonomic nervous system controls things that we take for granted: blood pressure, temperature, digestion, etc. I think the itching is from blood pooling in the limbs b/c our blood pressure is so whacky that it cannot get out of our extremeties. Do you get migraines? That is probably my worst symptom!

I went thru a very bad bout of itching a while back and took Lyrica for it....yes, PN can cause it, so can meds....but, it is worth looking at liver enzymes and your bilirubin.

Yes, I get migraines and usually they strike right before an autonomic episode. They are so severe and create numbness and stroke-like symptoms. They call them 'complicated migraine'. I feel them in my chest also, like angina and in my abdomen (abdominal migraine). I also get tachycardia (take Verapamil), near-syncope, low blood pressure alterating w/high BP. Severe arm pain and numbness, abdominal pain, severe gastroparesis, alternating temperature (fever to sub-core), bladder dysfunction (problems peeing) and itching. These are things that happen with severe attacks. I had two last year. I have a lesser degree of these symptoms on a day-to day basis with terrible fatigue - I have problems climbing the stairs and I had to quit my day job of 25 years, three years ago. I am now on SSD.

Cyclelops, you know the drill... You have the condition and all of it's horrible atrocities. TinaG... sounds like you have the same problem. Dr. Khurana will definitely see this... He likes you to tell him an event in action, or how you feel on a day-to-day basis, and how it all began. Take notes with you, although, he may tell you to put them away. He does not want to know what other MD's have diagnosed... He does not care as he will make his own conclusions.

I find it strange that this all started after you had a child. I started having autonomic symptoms (tachycardia being the first) after a viral pneumonia and after I had a total hysterectomy about 17 years ago. I often wonder if there was a hormonal shift that caused this, or if it was a viral thing... I wonder?

Hope you are well. You too Cyclelops. Have a good Holiday,

Mere

All that did was give the MD's something to point to.. the ever elusive CAUSE for neuropathy. You know it isn't the cause , we all know it isn't the cause - but it's like the Holy grail to them...

:deadhorse: these are the stupid doctors...

Mere--
 

--that viral pneumonia aspect may be worth exploring; a number of people have developed autoimmune and/or autonomic conditions after an infection, through the molecular mimicry process. There are well known "infectious prodromes" for conditions such as Guillain-Barre syndrome, for example.

Take a look at:

http://neuromuscular.wustl.edu/autonomic.html#primary

I think in general PN is multifactorial....first genetic susceptibility.

Then a trigger. Some of us have multiple triggers.

I had a severe car accident, and Lyme. I also think that severe emotional stress plays in as well.

One of my adoptive daughters has Crohns, and she has just moved in with us, and her symptoms are identical to mine, except for the stomach pain! I think the young lady has neuropathy too! She says, she thinks the neuropathy happened after her epidural for childbirth. Makes me wonder. My neuro is totally against any kind of spinal picks, and I had 3 of those when I had my nerve root blocks.

It seems like when we tell people we have PN, there is no real understanding of the misery of this condition and it is easier to tell people you have some other better understood condition. I admit to telling people I have a 'lupus like disease that is attacking my neuro system.' People just say, 'Ohhhh, I see'. In general, it is better to not even mention I am sick....I 'look too good'.

Cyclelops and Glenntaj, Yes, I do feel that there was a 'trigger' - probably the monoclonal virus. In terms of appearance, people have always made the comment "You look so healthy". Maybe the flushing helps my appearance in that regard. It does rather **** me off though if I am feeling poorly and someone says that. It seems condescending. If people ask what my problem is, I will usually tell them that I have a type of lupus that affects different parts of my body.

I do have fibromyalgia and have had that diagnosis for years, but I don't mention that to anyone because 'erveryone' now has fibromyalgia. If people are overstrssed or tired I hear "I must have fibromyalgia". Don't get me wrong... I am pleased that there is a new found awareness on FMS. But for crying out loud, some people can be so easily jaded into thinking they have a serious problem... perhaps after watching a Lyrica commercial and thinking "oh yes, I do have some tenderness in my muscle there (pointing)". I really don't think that FMS is as prevalent as is seems. I swear, just a few weeks ago my neighbor said she was a bit run down and tired and that she must have fibromyalgia. I wanted to laugh in her face and say "are you kidding?". My husband just looked at me and rolled his eyes.

Mere

Mere

Fibro vs something worse?
 

I too had muscle 'knots/spasms' well long before my own immune thing went into full speed? I'd learned how to deal with them and what to do, vis-a-vis, massage, heat, cold, accupressure? The WHOLE GAMUT! I THINK? I should be grateful that I skipped first base? W/the Fibro diagnosis? Fibro vs, muscular/nerve trauma and rehab are far different things!
I think I should go and see if past docs are still alive? And if so...go kiss their shoes [IF I could get down to do that? Or at least facial cheeks?] I must consider myself super-lucky that I did NOT get the 'fibro' attached to me. That sounds like a bad thing to say? But truly it is not, as Fibro was never a key issue. Even tho, I mite have 'fibro issues'? That has never ever been an aspect or issue raised. Why one vs the other? Doc training? Patient training the doc?[not likely, but hopeful?] I don't know.
But, can we all back up a bit? The complexity of the diagnoses results from the testings? As the StLouis Site demonstrates...there are a heap of possibilities-KNOWN! Unknown? Yet to come. The latter part is the scary part? It's growing every year, the combinations/permutations are getting wider and broader and a whole heap of education has to be done soon by neuros to offset the more expensive wave of immune diseases. The mis-diagnosis is well documented here, and it scares me silly! [My polite choice of wording] WE DO NOT DESERVE THIS DEGREE of IGNORANCE among our key physicians! That ignorance leads to extraordinary and at times? Bankrupting expenses!
ADDRESSING Triggers? Yep, I had them? Somehow having pneumonia for an extended period of time, AND being on a variety of antibiotics [known for possible PN S/E's?] have taken their toll? But I feel as if myown system was like one of those 'dominoes chains' set up to fall.....this way? or That way!
And, all the dominoes are still being sorted out, years later, but I suffer the consequenses... The odds are great? If'n it were a real LOTTERY? I'd be really, really rich! And then some?
Hey, once that old 'immune ball gets rolling'? It's the pinball effect-don't know where it'll end up.
Wow, It STILL feels good to beat my head against a solid surface now and then? Those endorphins? Super!
No blood was drawn as a result of this post! :hug::hug::hug:'s -j

Great post!

Mere

How terribly sad... Just when I thought I had it bad...

Mere

Yep, it does feel good to stop beating the head...
 

against the wall? But then what? Be cool, conniving, collected, with your facts like ducks in line to shoot down and go to each nay-sayer doc and ask? Excuse ME? Can you PLEASE provide me now with papers, diagnostic resources and any other research that point you in a direction? That MY OWN INSTINCT doesn't concur with?
I'm not a mental case, I am a stressed out sick hurting person! And rite now? You are or are not helping me, especially with some of your implications.
This sounds 'harsh' to say to a physician? As many are worse than old maid gossips. But at the same time, to stand up for yourself could gain you the respect all over that YOU Deserve. I've done that and it wasn't risky at the time? Because the first neuro I dealt with was a dud. Chock full of biases, and granted the first 3 steps of 'testing' were compentently done? The 4th & 5th were questionable and the rest was negligence. So I changed docs, and got some life back. Albiet more damage was done under that care?
Honestly, at times? WHY should it feel as IF we are going thru a 'mental exam' while at the neuro's? Re-Look at the tests! Take new tests! and then go DUH?!!!!!!!!!!! :hug::hug::hug::hug:'s to you good person!
Keep assaulting those docs with your own knowledge and let them KNOW they're not gonna get off so easily. We aren't stupid and we should be treated with more respect than we often are.
I found that in other medical issues? They'll walk you around as if you are deaf and blind! Any docs that say out and out 'trust me'? I am GONE! FAST!
That old phrase 'We didn't communicate well' does it's job for future docs!
Do you sense a little bit of past frustrations bubbling up here? NAH! :hug:'s J
PS Where are any FANGS when I need them?

I may be putting the cart before the horse, but I see the winds-a-blowin' that I nmay have to change PCP's. After 10 successful years with this one, alluva sudden I can't get in touch. emails, phone calls- no call back. She only sees patients 1-1/2 to 2 days a week, the rest of the time is research and teaching. Maybe I'm over reacting.
Admittedly it is a HUGE (Johns Hopkins Family Practice) division, and I won't be left in the lurch without a doc, but breaking in a new one & developing a good relationship is a big job and takes quite a while to establish. And shopping around & trying out new ones is exhausting! At age 66, I may not live to see it to fruition ;)

im going on two years now and still not happy with any of the PCP's ive had since.

Personally--
 

--I try to avoid primary care physicians as much as possible. It's nto thtat there aren't some good ones out there, but many of us here are such unusual cases by their standards that they are in over their heads with us with little idea how to handle our symptoms. (Not that specialists are necessarily more knowledgable either. I think the best way for most of us to go, if we can, is with clinical practices in tertiary centers or teaching hosptials that also do research and have more possibility of being on the cutting edge.)

I do feel for people who have insurance plans that REQUIRE them to go to primary care physicians first in order to even get a referral to a specialist--in our cases, rather than saving money in itsr gatekeeping, the practice tends to cost all of us money in the long run--doctors, patients, and insurance companies.

My PCP has turned out to be a life saver for me. He tracks all of my symptoms and he has quite a bit of knowledge about neuropathies. He has sent me to a teaching hospital for treatment and I need to go back due to changing symptoms. Luckily, my insurance doesn't require that I see him first, but he is here and he deals with my issues first hand so for me it makes sense. I've gone the route of the local neurologists and I haven't had any luck. They have their own in-house policies that prevent you from seeing someone else within their group and when you try to see a different one in the area, the Doctor politics kick-in and the patient suffers(speaking from my own experience here). Glenntaj, I agree that those who do require PCP visits for referrals really do cost a lot more in the long run both in terms of treatment and patient suffering.

i had a really good pcp also, very helpful, realized that i had a number of things going on and never even questioned referrals to specialists i needed to go to and who i wanted to go to. also filled out whatever forms i needed and wrote me several important letters. since this doctor moved to colorado ive had some who want me to go specialists for ground that has already been well covered and settled or others who ive had to argue with to get even antibiotics when ive felt respiratory infections coming on. If i dont get them early i have complications from asthma, wheezing, constant coughing, only able to take half breaths for over 12 weeks constantly 24/7 at times. so i go around the pcp now and just deal with the specialists. i miss my old pcp.

We've gotten off topic a bit, but this discussion IS relevant...
 

Because most of us w/pn and other 'neuropathies' tend to have other complex and diverting issues that make it hard for either specialists or Primaries to see us as a WHOLE PERSON!
That said? I see my primary about once a year [exam-update], maybe twice? The 2nd time for a 'cold' that mite be 'something more'-in my case any hint of pneumonia will either shut my brain off or send me over a cliff! Why? Because the primary IS the 'gatekeeper'! You'd be surprised at your various docs' files on you? Who they've corresponded to and at what length [got good peeks on more than one time when docs have to leave me alone {w/file?} to take an emergency call - I don't really mind them doing that? Could be me sometime-tho I hope not.] -they write PAGES of updates to the primary! And to some of my other key docs too!!
Bob? When you can't get your doc for ANYTHING? Time to call and ask for an alternative---just say the old: We aren't connecting well. Leave it at that, no bad talk no reason for retributions-just a change. Ideally you'll get a 'live one' on the next try. I'll cross my fingers for you!
Mere? I've not had any autonomic testing? But I definitely have autonomic lymphatic symptoms- circulation and sweating are irregular, with swelling at all the wrong times? Little to no body oil production of the kind that keeps your skin moist and flexable-I'm going thru gallons of lotions now just to keep skin alive and not damaged? And I was told by the neuro diagnosing me that I'd likely have asorbtion problems w/vitamins and minerals [Mrs D? Thank you immensely for all you help over time-I almost understand it all, not quite but enough] -tho he never said why.
When I'd decided on the IVIG? All papers indicated that the kidneys and the liver should be checked regularly...as the cells that are mutant and killed by the Immune Globulins put extra stressors on these organs [as they go thru these organs on their way out]. Sooo for that? Ya gotta drink water for a couple of days afterwards to flush the worst of it all out!
As for the migraines? I'd only had 'non-aura' ones-they were enuf to scare me silly and I'd been cardiac, eye and vascular tested to the nth degree. They then just 'went away' AAAH! BUT When I get them now? They are very short and intermittent-followed by a new wave of muscular neuropathy issues. Scary enuf that.
Goodness knows? NEVER EVER ASK WHAT ELSE CAN HAPPEN? Cause it just mite! And WE DON'T WANT THAT!!! :hug::hug::hug:'s to all! Thanks too for letting me 'vent' a little? -j