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Unknown Cause or Idiopathic SFN

Neuropathy | Last Active: Jan 7, 2020 | Replies (120)
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@katec

You’re so sweet for thinking of him. Sadly, nothing new to report. The doctors are still trying to determine if IVIG is the best treatment for him. He sees a wonderful neurologist in Boston who is working on the long term plan for him, but we are seeing a new neurologist that will be local to us, here in Texas, who can hopefully help with the daily pain. He isn’t currently taking anything right now for the pain and he’s pretty miserable. There’s a lot of walking involved in a regular day of high school, so he’s running on empty by the time he gets home but he’s still smiling hoping for the best. He’s been taking CBD lately, but he said it doesn’t seem to make any difference. Are the tinctures (we’ve never tried those) better/more effective than the capsules? Maybe that is something we should look into while we wait to see the new dr next week?

Thanks again for asking about him! How has your pain been lately?

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Replies to "You’re so sweet for thinking of him. Sadly, nothing new to report. The doctors are still..."
Jim, Volunteer Mentor | @jimhd | Dec 12, 2019

@katec

Remember that I continue to pray for your son every day.

Jim

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Rachel, Volunteer Mentor | @rwinney | Dec 13, 2019

No problem. He crosses my mind often as I feel horrible for him. Glad he will see a local Neuro. I thought Dr. Oaklander was on board with her thoughts on SFN being associated to auto immune. My knowledge is that every other treatment must be tried for pain before insurance will consider IVIG at 5-10k per treatment. This is hearsay from my Neurologist who is associated with Oaklander. But, given your sons diagnosis at 15 maybe age is a game changer. I certainly hope so. That boy should get whatever helps him function, be safe and as pain free as possible. I'm hanging in there. Thanks for asking. I stopped receiving lidocaine infusions...unfortunately, they weren't keeping up with my progressive pain. Now Im climbing up the THC dosing chart along with CBD. Other drugs as well, each with a purpose. I'm also glad to hear your son is able to attend school, even though it is a challenge. 💪🏼 Keep hope alive young man!
Rachel

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Rachel, Volunteer Mentor | @rwinney | Dec 13, 2019

Tincture allow for faster absorption to the blood stream through placement under the tongue. Some prefer that method because it's quicker, not necessarily easier.

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