Hi KMEB,

Thanks for your feedback and kind thoughts!

Not a nice place for you to be, in diagnostic no-mans-land regarding Amyloidosis. Wouldn't you be deteriorating fast if you had A? Perhaps that is an assumption on my part that you aren't deteriorating -forgive me, if so!

I suppose my reasoning for myself is that I have been unwell for 14 months now and have not worsened hugely apart from the pulmonary symptoms, and I'm not in the sex demographic for Amyl (66% males - still I suppose that leaves 33% females. Shivers!!)

The Pulmonologist told me that he would be on the lookout for amyloid plaques and doing a biopsy would be one of the things he would perform. I'm sure it will be negative though!

A Serum Protein Electrophoresis (SPEP) is not the current gold standard test of choice for determining if there are rogue monoclonal antibodies (M-proteins) in the blood (which can be associated with amylidosis and other blood disorders.

The more specific Immunofixation electrophoresis of serum and urine should be ordered--this is normally done with an Ig subclass enumeration as well, to see if there are more antibodies than there should be. They wil look for specific bands that may indicate the rogue antibodies and the protein subclasses characteristic of the condition.

An SPEP is not sufficient, as small elevations in the Ig subclasses can be obscured in the overall gamm globulin testing.

See:

http://neuromuscular.wustl.edu/antibody/mprotein.htm

http://neuromuscular.wustl.edu/nother/amyloid.htm

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

Remeber, there could be many many reasons for the PN......

I've been sick for 9 years now - but last year very rapid decline.... my cardiac system is also affected and I suffer daily multiple cardiac events and have to take meds constantly to control... my balance, loss of sensastion etc has gotten much worse, and due to gastroparesis (which is from the nerve damage) has much worsensed much to my chargrin for a girl who loves to eat - ensure and broth does not a big fat cheese burger make! The docs concensous now putting amyloid aside (they want to do another fat pad biopsy but I told them to hang on - because of the severity of the PN at this point I really wouldnt be candidate for any amyloid treatments anyway at this point other then what I'm already getting for guts and heart) is that the PN is genetic - the form they believe it is there is no current genetic test (Boston Mass is working on on) - but a "clinical" diagnosis based on several neuros who have seen me talking together, carfeullly going over nerve biopsies etc., and even though we tried high dose IVIG for over a year it did nothing - they were hoping I would respond even though I had no auto-immune markers and I felt better (I thought) a few days after each infusion) but in retrospect I think it was just relief from getting thru the weekly infusions - which I had many side affects with every infusion and really dreaded them (for those who IVIG works for - its wonderful - dont get me wrong!)...... Now they say there is nothing they can do and we're just working on trying to gain to some weight - and the heart meds so far are keeping symtoms under control.....

Again, the best detector for amy is finding the culprit thru biopsy - also, the light chain test is very helpful - but if the basic markers arent there and there is no severely affected organ or symtoms that really raise some eyebrows - they need to look at the whole PN testing spectrum as others have said...

Hang in there -

Hi KMEB,

I am very sorry to hear of your health decline - I think we all dread this, especially as we have so many plans for the future. A future we have to admit we may not have!

I am very aware that there are many causes of PN and consequently I have already undergone a good number of tests to find a cause. As most of the tests at the time were negative, it was for this very reason that I had all but given up finding a cause as no-one seemed to want to pursue anything further........then the very distressing cough started in April 2008.

Although I have still felt all the PN symptoms over these past months and also become progressively stiff in my muscles, I have found most of my energies have gone into surviving the cough on a daily basis; therefore discovering a cause for my PN had been put on hold.

What I have wondered these past few months; is the lung condition/cough and the PN caused by two different things or are they caused by the same causative agent? This is when I did a lot of research on Mycoplasma Pn. which I have been proved to have and I looked at literature to elicit it's effects on the peripheral nervous system. This I still don't know for sure.

However at least since my hospitalisation some things have been clarified in regard to my lung problems and whether they turn out to be completely separate from PN remains to be seen. Will keep you informed.

--for signs of sarcoidosis, given your lung problems?

http://neuromuscular.wustl.edu/antib...op.htm#sarcoid

http://www.emedicine.com/oph/topic451.htm

Hi Glenn,

Thankyou for your feedback. I will research this area some more and thank you for those links. In this whole research area, I find that information that one reads and discards as irrelevant (for self) at one point in time, can become more meaningful and significant when revisited as one is steered down another alley. I have been down so many alleys these past 14months.

The first SPEP I had done in August 2007 was done in the initial general round of testing for possible causes of PN and the next one was recommended by my endocrinologist in July this year as I had such a bad cough. I don't know that any of them were particularly thinking Amyloidosis at that time - maybe they were!

It was only a week ago that Amyloidosis was mentioned by my Pulmonologist based on the existance of both PN and recent severe lung deterioration. The Pulmonologist said he is going to be doing more blood tests on the 7th October before the Bronchoscopy, so perhaps he will be doing the more specific Amylodosis tests as you suggest. I know he said he would do a biospy if he sees anything resembling Amyl.