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...

these are the stupid doctors...

--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

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! 's -j

You bet there are triggers for lots of stuff. One of my good friends was driving and had her Mom with her. The train hit them. Her Mom was killed and my friend was hurt. After that she developed Rheumatoid Arthritis, Lupus and Scleroderma. All of these at the same time. She was perfectly healthy before all of this.

She lived a number of years longer than the doctors expected having all three of these. She had a great attitude and did everything she could do (I'm sure this all helped her) but a few years ago she died a horrible death.

Great post!

Mere

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

Mere

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?!!!!!!!!!!! '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! 's J
PS Where are any FANGS when I need them?