Well, my labs are back from Athena, the neurologists office called today... Normal, normal, normal...

I know this is good news but now I am left in the boat of having this thing progress, but not having an answer... Good Lord it's been 17 years and I am sick of this.

He wants me to follow with the autonomic specialist at UMD.

Mere

I would say having them come back normal is a relief.

Now refresh my memory, since I am going senile lately....you did have a + ANA, and have autoimmune issues, right? I remember some mention of Sjogren's. It is a cause or associated with PN.

My neuro is an autonomic specialist, and I really like him. I think your doc gave you good advice. My doc stopped short of running the Athena panel, and I would still like to have it done, even with clear cut autoimmune disease. My theory is one can have both.

Given I had RLS as a kid, makes me wonder.

Anyway, yes, go see the autonomic specialist. They see more cases of autonomic neuropathy, thus, know more about it.

Thanks Cyclelops, the test results are indeed a relief being the panel of tests that were run were for amyloidosis, small cell carcinoma, etc... so it is definitely good that the panel was negative.

And yes, I have had a +speckled ANA 160 (not particularly a strong positive) in the past (last few were normal) and often have a +sed rate and elevated immunoglobulins. I have had, for many years, vague symptoms of autoimmune illness but never have tested positive for anything definite (and may never).

...Sometimes referred to as undifferentiated connective tissue disease and I also have arthritic problems with my joints (especially large), so Rheumy also diagnosed me as having spondylarthropathy. I take a DMARD (Humira) and it helps with that. I do not have antibodies for Sjogrens but have vague symptoms such as dry mucous membranes.

I have several neurological symptoms, but with all this testing, the only positives are sed. rate at 36 and "moderate" small fiber neuropathy through skin biopsy and neuronal (?) weakness (shows physically and on nerve conduction study). I have never had any autonomic testing done.

The gastroparesis started last summer after a particular bad episode of dysautonomia. The dysautonomia started about the same time as the AI symptoms - about 17 years ago following a particularly bad viral pneumonia. It started suddenly and severely. I had spells of tachycardia, syncope, asthma, flushing and paleness, bladder problems, severe weakness and severe weight loss. The dysautonomia has improved somewhat over the years and then returned as "attacks" - some of the symptoms have changed a bit (asthma is gone), but some are the same. I always have the flushing with congestion. I really wonder if I had Guillan Barre 17 years ago when this all started...I remember being so very ill for so very long.

I am, as many are, frustrated with a lack of a reason for the PN. Neurologically, things are progressing - slowly, but surely. It concerns me.

I suppose my experience with PN is a common situation - quite possibly referred to as 'ideopathic". I will see the specialist as recommended...

Mere

Making it worse? Is that there are those 'negatives' of results... First, go check out what the 'parameters' of the negatives are? You mite be just under by a decimal point, or over by the same for some tests... Meaning, maybe, that it's not 'blown up flare' now? But that there are residuals...which can be as bad to pinpoint as 'ideopathic's'!
Try being your own 'detective' on this search? It's not going to get you too far, and you'll find yourself going off all sorts of different avenues? But It CAN help you understand how complex we as HUMANS are. We are not also, Controlled condition hot-house type flowers. So the variables are immense if not huger. One thing about my own 'neuropathy' is that docs seem to think it could spontaneously 'go away'. RIGGGHHHHTTT! Not!
It IS hard to put your whole body's emotional and physical state to stand down and not go RED ALERT! But you must to get to the route of whatever sequences of events caused this immune [and it must be?] cascade. And it must be some sort of cascade? Slow or fast...it's doing damage and you are functioning less well as time goes by. Many here have been there and are still doing that? When you wake up? Just be Super Happy that you can get UP! and then go and do even simple things. Enjoy the coming of spring, and even the allergies that come with it! You get the drift.. 's and hope always!!!! - j

Thanks dahlek for the post. You have a good point about a 'blown-up flare'. I was thinking about that...

When I had the 'full blown-up flares' (June and September 2009), I had severe pain starting in MY UPPER ARM bicep (weird). Not both arms but one arm, right arm in June, left arm in September. On both occasions, it progressed to tingling and numbness in my hand and in June to my mouth, tongue and head (felt like lidocaine). I had GP (hospitalized), Pots, severe weakness, and all the autonomic dysfunction. The tingling and numbness did improve both times, ending in tingling in my fingers... but, this last flare took a full five months to resolve. Now, I just feel some intermittent weirdness in the forearm and sometimes the fingers. When I am having a bad day, I feel a greater degree of the tingling. This type of sensory disturbance may be common to those with PN... I don't know, but it is fairly new to me. My feet have been 'dead' a long time, but the other numbness, pain and tingling in my arms, face, mouth and head is new this year.

I think that if any sort of neurological testing were done during these 'critical' periods, something may show.

It is may just take more time to become apparent in my chemistry...unfortunately...or fortunately, that I have not had any severe 'flares' since September.

Is this sort of sensory dysfunction common? Do you have this?

Mere

Right now, non-functional...lost lots of muscle tone. Muscle tone is hard to achieve when the foot doesn't work right?
When off? I'd once used my cane to push myself out of my car, Started to move, and couldn't...found that the cane tip was RIGHT IN THE CENTER OF MY FOOT! Duh? Didn't feel a thing in the foot at the time, could have broken something, but, luckily didn't? Grateful for THAT.
It comes and goes in 'waves' sort of.. You feel weakness 'coming on' then? You're able to slog thru and overcome it or collapse. I try hard not to do the latter.
Just be patient, do yer homework and ask 'stupid' questions as to where YOU think this mite be coming from or heading? Never ever say: got it from the 'web'! Just if you must? Say I saw a paper from NINDS or the like [any really respectable publication?] and it got me curious? Here's the first page...don't print out the whole thing...but I only give out a page if the doc is receptive. Many are NOT! If not, it can work against you. Docs and their biases...don't you know?
Keep at it. Hope always! - j

Thanks for the advise. I know that docs can be very egotistic and if they think that you know too much, they may label you as a hypochondriac... I keep judicious notes about what has happened each time this occurs as a collapse and what i feel on a day-to-day basis. They seem to like that.

Your difficulties sound more serious than mine... I am so sorry to hear what happened with your cane. I have found that my muscle tone has been getting worse - in my case, I think it's from not exercising enough - being more sedentary.

Thanks for the coaching... It is very helpful...

Mere