This week I had my follow up visit at the Mayo Clinic. I have to say, the end of my visit left me more confused than ever, and this trip was definitely not what I had expected it to be. I feel it is important to write about this, as often patients will find themselves in a maze of contradictions and conflicting information.
To provide a little context before delving into what happened, a couple weeks ago I received back the results from the paraneoplastic panel. It all came in normal, except for the test for “AChR Ganglionic Neuronal Ab, S”, which came in at 0.03 nmol/L. The reference range is <=0.02, and so this came in just above it. In the lab notes, it said that “The positive predictive value for an autoimmune neurological diagnosis (diverse phenotypes) among patients with an alpha-3 ganglionic AChR antibody value of 0.03 – 0.09 nM is 46%.” It went on to say “The positive predictive value for a cancer diagnosis (diverse types) among patients positive for alpha-3 ganglionic AChR antibody is 30%, approximately 24% are historical neoplasms and 6% are detected prospectively”.
When I read this test result, I thought to myself that this was definitely something that appeared to be concrete. If it is autoimmune, it might open the door to therapies such as IVIG. And while I feared a cancer diagnosis, at the same time I thought to myself “It would likely still be in the early stages, and with treatment, the SFN could be reversed.”
When I spoke with the doctor, he told me that based on their research, the antibody count would have to be much greater – if I recall correctly, above 0.1 nM, before it would create a statistical indicator of being autoimmune or cancer related. He said that my case, though testing positive, was borderline, and therefore in his opinion not a significant risk. Nonetheless, he said that when I get home, I could take a PET scan to rule out cancer in order to put my mind at ease. He also said he sees no evidence of any autoimmune cause.
It is interesting that there seems to be a contradiction between what he told me, and what is stated in the lab notes. Being that they should all be based off the same research, I am not sure why such a contradiction exists. To speculate, it is possible that the lab notes are taken off old research, and his research is based off newer information. Nonetheless, with this contradiction, I’ll opt to take the safer route, and look into doing a PET scan sometime in the near future.
On a separate matter, I also did the TST (autonomic sweat test) that had been scheduled, which the doctor had told me came out normal. They also had me do another punch nerve biopsy, which he said would take another month to get the results back.
He then went on to tell me how he thinks the Therapath biopsy I did last year may not be accurate. I was rather taken aback by this, since I have showed it to so many different neurologists, and doctors over the past year. No one had questioned it, and is until now the one area of complete consensus. It is the basis of my SFN diagnosis. He said that “commercial tests” are sometimes not accurate, but did not elaborate further.
I asked him, if such was the case, during my previous trip to Mayo, why I was told that the sweat gland test I had taken was a confirmation of the SFN diagnosis. He looked up the test, and said that while it did test positive, it was borderline. He went on to tell me that the TST test I just did overrode the previous test’s results, and that it came back normal.
He went on to say medically there doesn’t seem to be any problem, and basically said that the symptoms I have been experiencing are psychological in nature.
I found myself laughing inside at the absurdity of this. I’ve been through this sort of thing many times prior to my SFN diagnosis. I found it curious, however, that he would voice this conclusion before getting in the results for the new biopsy. I just replied saying “Well, we will see how the results for the new biopsy comes out”.
We talked some more, and it was concluded that even if the new skin biopsy reaffirms the SFN diagnosis, there is nothing that can be done about it. And so, my situation remains unchanged.
My course of action is to look into the PET scan, and await the results on the new nerve biopsy.
After these things are complete, assuming I don’t have cancer, and regardless of what the biopsy results state – I think I am done with seeing doctors at this point. I might still touch base with my Skype neurologist every 6 months or so, but that’s about it. Enough is enough 🙂
Wishing everyone a low (and hopefully no) pain day!