Update – October 5, 2017

I had my final consult with my most trusted neurologist. Barring extraordinary circumstances, I don’t plan on doing any more consults for an indefinite period of time.

She had reviewed all my records from the Mayo Clinic, as well as local providers.

Regarding the difference between the Therapath and Mayo biopsy reports, she told me that there are different processes. She said that Mayo’s tests only the epidermal nerve fibers, whereas Therapath’s tests both the epidermal nerve fibers as well as sweat glands.

As for the various conflicting test reports (which I detail in the August 27 post), she told me my diagnosis remains SFN, as the symptoms remain, and there is enough evidence from all the tests to validate the underlying issue.

She advised me in 1 years time to take another test for the alpha-3 ganglionic AChR antibody, to see if the titer has changed. She said there is a link between this antibody and SFN, and given that I have a low-positive for it, it could be connected.

She said there is research currently being done, which indicates there are other obscure antibodies that could potentially be playing a role in idiopathic SFN cases. And so if it’s not that one, its likely something else that is just not known right now. She then went on to tell me about some of the current research being done.

I hope over the coming years, more will be known about the exact antibodies that cause this condition and how it can be treated.

2 thoughts on “Update – October 5, 2017”

  1. Hello Paul –

    Over the past couple of years I’ve been reading your interesting and very informative blog that tracks your journey to try to discover the causes of you SFN.
    I too suffer from this condition (yet another idiopathic!) having been diagnosed in 2010. Like you, I felt it was important to try to establish the cause and I attempted to do this assiduously – without any definitive conclusion. I therefore decided to spend more of my time learning how best to live with the beast – a course which I believe you have now undertaken and for which I wish you the best of luck!

    Sometime last year i did register with your forum – in the main I wanted to make contact with Helio, a 52 year old Brazilian psychiatrist who I happened to meet via Facebook. Helio told me he had made several posts on your website and these covered several important issues which could be helpful both to me and to others who had joined your forum. At that time I believe I did manage to find several posts by Helio. It now appears that the forum is closed – if not, for some reason I can’t access it. I can only find one of Helio’s which is in your “About” Page.

    Paul, I’d be grateful for any info you have re: accessing the forum page or whether it has been closed – also, could you possibly help me navigate to any/all Helio’s posts on any subject he has chosen.
    Finally, I think you are right to stop asking questions and it’s good if you’ve accepted you will not find a definitive answer – you can now find some equilibrium in your life and I wish you well.
    Yours,
    Most sincerely,
    Geoff
    (Geoff Stephens)

    1. Hi Geoff,

      Thank you for your message, and I’m sorry that you have been dealing with this same set of circumstance. My future posts will deal more with this issue of how to “live with the beast”, as like in your situation – the traditional medical road seems to be a dead end right now. I am optimistic over the coming years that there will be better treatments, and at some point, as medical knowledge grows, this condition will become more benign.

      As for the forum – most posts on this site where direct comments from my entries. Helio’s comments were really great, I found some of them at:

      http://www.smallfiberneuropathy.org/search-for-cause-and-treatment/mayo-clinic-trip-update-june-2017/

      http://www.smallfiberneuropathy.org/search-for-cause-and-treatment/update-april-30-2017/

      http://www.smallfiberneuropathy.org/search-for-cause-and-treatment/update-march-29-2017/

      I’ve also added a search functionality to the side bar of the main page, where you can search by keywords. Unfortunately though this does not include author’s name – and so I’ll see if there is a way to add that in.

      As for the forum you registered at – there was only one person who posted and then left. A few months ago, I started getting a barrage of spam (thousands of spams a day), and so decided to shut it down, since people didn’t seem to be using it anyway.

      If you browse through some of my older posts, you will see some interesting comments. Though it mostly deals with discovering potential causes, rather than how to live with it. And so in the future, I plan to make posts about specific coping techniques, which others can comment on or add to.

      I hope this info has been helpful, and am wishing you the best through this journey!

      Paul

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