Amyloid?

Hello everyone,

I'm new to the forum and apologize in advance for the complexity of my background and questions. I realize it's unlikely that most of you will have such a complicated history, but I'm hoping that perhaps someone with knowledge or experience with CTS secondary to amyloidosis may be able to comment on whether my situation sounds characteristic of amyloid CTS.

Background: I'm a male from the U.S., currently age 31. I was diagnosed with bilateral carpal tunnel by nerve conduction studies in August 2015. No treatment was recommended because my symptoms were quite minor at the time (just tiny, 'pinpoint' paresthesias at the tips of each finger). As time went on the paresthesias in my fingertips actually became less frequent and less intense, rather than more, to the point where I rarely even notice them anymore. Since this time, however, I've begun developing a host of additional seemingly neurological symptos, as well as other non-neurological symptoms that I fear may be suggestive of amyloidosis:

Neurological:
- Intermittent allodynia (very sensitive skin that makes clothing and bedding uncomfortable) extending from the armpit of my left arm all the way down to about the middle of my inner forearm in what appears to be the ulnar pathway

-Feeling of decreased, but not absent, sensation in fingertips. If I lightly touch a pin to my fingertips I am aware that I'm touching something, but don't really register it as a 'sharp' sensation the way a normal individual would.

- Dull ache on the outer forearm area in the radial pathway that is exacerbated by trying to lift/extend my middle fingers against resistance, which is apparently indicative of radial tunnel syndrome. This sensation sometimes even extends up as high as my shoulder, but usually ranges from upper forearm to wrist/hand.

- Very recent (last 2 weeks) onset of a bizarre sharp pain in the front of my ankle after walking for long distances at a time (4+miles). I realize this could easily be attributed to an issue with a tendon or something non-neurological, however one particular aspect of this symptom makes me think it is neurological, and that is that when this symptoms kicks in I begin to experience 'foot drop.' For those who might not know, this is when you lose the ability to raise the front of your foot up by flexing your ankle, and when you walk you wind up lifting up at the knee rather than the ankle. I should reiterate, however, that this symptom occurs only after walking for some distance and my walking and foot/ankle range of motion is normal and painless under normal circumstances.

-Herniated disc in lower back (L5/S1)- Probably unrelated, but I thought I'd mention it anyway.

Other various symptoms/conditions include:

-Diagnosis of Von Willebrand's Disease, a bleeding disorder, in June 2016. This is a disease that is most commonly a relatively mild, hereditary bleeding disorder, but no one in my family is known to have this or any bleeding disorder, and my symptoms did not begin until last year, at age 30. Amyloidosis and other plasma cell disorders like MGUS or myeloma are known to cause an 'acquired' Von Willebrand syndrome in some individuals and apparently it's nearly impossible to definitively distinguish between a case of the congenital disease that was simply asymptomatic for decades and a case of the disease being acquired secondary to one of the aforementioned diseases.

- I don't know if this is actually the case or if it simply reflects the somewhat altered sensation in my fingertips, but I feel as though the skin on the tips of the 2nd through 5th fingers of my left hand has become somehow thickened. This is in contrast to my thumb, however, which has the exact opposite going on. My skin on the tip of my left thumb definitely has an altered consistency in which it is visibly malleable. For instance, if I press my thumb up against the corner of a table the skin will remain indented indefinitely, rather than quickly bouncing back into it's normal shape, until I manually 'mold' the skin back into it's normal shape (this is where I imagine some of you will begin to think I'm completely out of my mind, but my primary care doctor has witnessed this and had no idea what to make of it). This malleable thumb issue seems to be variable throughout the day and dependent upon what I'm doing. If I go for a walk with my hands at my sides for 30 minutes or so my thumb consistency will be completely normal and the skin will have the normal amount of elasticity. Throughout the day when I'm using my hands, however, the problem returns, almost as though some fluid in my thumbpad drains away when my hands are up and in use. Incidentally my mother appears to have something similar going on with her thumbs, so perhaps this is just a strange genetic variation on normal. Who knows...

To make a long story short, I've spent thousands over the past year and a half attempting to get to the bottom of my symptoms and have actually had numerous tests to attempt to identify the presence of amyloid, including blood and urine tests (protein electrophoresis, immunofixation, free light chains, quantitative immunoglobulins) and biopsies (abdominal fat pad, bone marrow, skin punch biopsy from foot, all with Congo Red stain to look for amyloid), with nothing definitively identifying amyloid or a monoclonal protein disorder, but some unusual results (serum free light chain kappa/lambda ratio elevated, due to low lambda; increased serum IgA and decreased IgG and IgM) that don't quite rule it out either.

At this point both hematologist/oncologists and my neurologist have told me that they think it's time to abandon the amyloid hypothesis, since 3 different biopsies were negative, but as I said, they acknowledge that my symptoms are consistent with the disease and they have no alternate explanation for my symptoms or my abnormal blood work, which is pretty specific to plasma cell disorders. I'm becoming quite emotionally exhausted and have lived in a state of constant anxiety for over a year now.

All of this buildup and backstory just to ask: if any of you have amyloid-related CTS, does my story sound familiar? Given that I have developed symptoms suggestive of dysfuntion of all the major nerves in my arms, should I be pressing my neurologist for a better answer than just CTS? Thank you very much for reading.