It's amazing how everything that is wrong with us is 'anxiety' or some other non-specific cr@p. Been there, done that. I can't understand how I can have this ANA and pattern with no ENA showing up....grrrrr.

I also had 'attacks' as you put it. Now it is all the time tho. Mine used to come midafternoon.

Seems to me if you have SFN and autonomic symptoms, they would do the testing and understand it is due to the PN. What the PN is from, well, that is the mystery.

I have a cold today too, which is a rarity for me lately.

Cyclelops, I am sorry you are having the attacks... You must be exhausted. Mine were worse in the morning when something would hit my stomach (immediately like a reflex)... I think I lost 40 pounds in two months. Now, I would be about the right weight if i LOST 40 pounds... All this up and down weight.

I was recently diagnosed with "moderate" SFN a couple months ago through skin biopsy. New doctor didn't say much about it on this first visit. It really does seem like a no-brainier though... Maybe he knows something? You can tell that I have such a high esteem of doctors?!

Maybe your autoimmune disease is still morphing, hence the non-ENA?

Take care of the cold..

Mere

I am going to have to accept that it is simply, 'autoimmune disease'. If I were not a stickler, I would say, it was Sjogren's, but my antibodies are negative for that. The docs say that is what it is, but I think it is more of a diagnosis to pacify me, which it doesn't. If they feel it is Sjogren's, then why not Mixed Connective? One tells me this, another that, and really no one knows.

I think they either need to increase the frequency of IVIG, or add something like Cellcept. I am tooooo scared of Rituxan and I read the results are not that great with Rituxan.

I just hope they are not missing the forest for the trees.

I am wondering if they are going to recommend fludrocortisone to increase your BP?

I do hope you get some answers....Limbo stinks, unless it is a dance!

Yes, this is true. I am always in limbo, just wish I could dance...

You know, the more and more I understand about AI disease, I really have to wonder if there are many variants of what we know as Sjogrens or Lupus, MCTD or Scleroderma, (etc.) disease?...

I never seem to fit into a "box", yet I have and have had for many years (18 years), evidence of AI disease, mostly Lupus. Physically, I fit the criteria, serologically, I don't. Fortunately, I have a good Rheumatologist that I have been seeing for a long time, and he understands how I am, and treats me for AI disease. It helps me.

I do think, Cyclelops, that we, and many others will be "labeled" in time - and I also think that the current knowledge and testing is inadequate. AI disease is too complex for what is currently available in detection and testing.

Understand about Rituxan... I have read about it... And, absolutely understand your saying "hope they are not missing the forest for the trees". I do also think about that - very much so with the last visit to the new neurologist...

Mere

Oh, also, thanks Plgerrad....It's good to know that some one appreciates my humor....I figure a few folks don't, lol.

An afterthought Cyclelops,

I know that doctors have huge ego's, but perhaps you could somehow tell them that you would like to try the Cellcept... You may know best - it is after all your health and body...Perhaps, you instinct is correct.

Mere

My docs are pretty reasonable. My neuro really tries to accomodate me. If I do decide I want to try the Cellcept, it will be a small dose and with the IVIG. It is a matter of telling him I feel I need more. He will contact me next week. I will see what they say. I see my rheumie and and my neuro in May, as well.

I hope they decide to do the autonomic battery for you too....

And as far as autoimmune disease being specific, I think there are lots of people that have overlap disease, which is essentially what I have. Even my muscle biopsy has a lot of what some one with polymyositis has....my CRP bounces, my RNP antibodies are just slightly under the cut off, my C4 is low like in lupus, my salivary gland is Sjogrens, and my ANA is scleroderma-ish....how it THAT for mixed connective tissue disease, LOL. Tah Dah....

Plus, I think one can have both hereditary PN and autoimmune issues if one is has crummy luck.

It is what it is.....It is Cyclelop's Syndrome. Main symptom is the patient becomes insanely prone to humor.

So Mere, keep us posted on what they are going to do.

Thanks cyclelops...
We will see what he does. He was unsure of how to proceed until he reviews my history...

You have a lot of positive serology. Definitely something hard and sure going on.

"Main symptom is the patient becomes insanely prone to humor".

It helps us all, cyclelops. Please keep on, you do have a great sense of humor that comes through in your writing.

Mere

Given the ANA is that high, I sure would sleep better if I knew which autoantibody was chewing on which portion of my nuclear DNA. It is kinda like having roaches in your kitchen, and not being able to catch them when you turn the lights on.....or termites in your wall. You know they are there, you just can't erradicate them without poisoning yourself too.

With that image, I think I better

Get a shoe....get that bugger!!