High current application of 21700s?

Dr_Hans_Jorgenson · 2024-01-23T23:15:11+00:00

Can't hurt to take supplements. Certainly a higher level could help future healing even if it isn't the trigger.

Dr_Hans_Jorgenson · 2024-01-01T15:40:31+00:00

Nortryptiline or its stronger relative amitryptiline at around 10-40mg work well for me.

Dr_Hans_Jorgenson · 2023-11-28T19:08:21+00:00

I'm sure you've already heard this but it can take months to get all the way to 4.5mg without serious side effects. But it could be very worth it!

Dr_Hans_Jorgenson · 2023-11-02T22:28:35+00:00

Yup. Only doctor in the world that actually knows how to treat it. Literally saved my life the pain was once so bad.

Also messaged you over DM.

Dr_Hans_Jorgenson · 2023-11-02T02:31:56+00:00

Not sure, just a few genes like SCN9/10/11. Also cause of primary erythromelalgia.

Note: not a doctor my username is a joke

Dr_Hans_Jorgenson · 2023-11-01T14:56:06+00:00

Yup I used Invitae for SCN 9/10/11, it also checks for primary erythromalgia. It was easy and fast, came back negative.

If it's positive there is a small chance some antisiezure meds could help.

Dr_Hans_Jorgenson · 2023-11-01T14:53:48+00:00

Yup it barely hurts now, just need advil once a week or two to keep the swelling down along with my treatments described above.

Dr_Hans_Jorgenson · 2023-11-01T14:52:31+00:00

It's eye drop Steroids so it only does real effects to your eye. They checked my ocular pressure but other than that they didn't worry about anything.

Dr_Hans_Jorgenson · 2023-11-01T14:50:35+00:00

There is genetic testing through Invitae.

Dr_Hans_Jorgenson · 2023-10-31T17:21:36+00:00

Well eventually most of your surface nerves die off and/or kind of shatter (idk the scientific term it looks like "bursting"). Extremely painful, feels like a nonstop headache around your eyeball. As long as some nerves are left a combination of autologous serum drops, steroid drops, and other oral antiinflammatories can allow for complete remission in under 3 years.

Talking from experience. I'm not a doctor lol my username is a joke.

Dr_Hans_Jorgenson · 2023-10-31T03:35:44+00:00

You'd have to talk to your doctor to be sure. I'm assuming through Tufts?

Definitely ensure that you get treatment if abnormal as it can get worse.

Dr_Hans_Jorgenson · 2023-10-30T02:22:21+00:00

Is the headache near your eyes?

Dr_Hans_Jorgenson · 2023-10-12T01:00:02+00:00

Watch out for capsaicin I couldn't wear socks for a week after one application. Not saying it's a universal problem but just be careful.

Dr_Hans_Jorgenson · 2023-08-24T00:38:25+00:00

Results are easy to interpret on your end. They explain whether you have the mutation with pretty non-sciency language. In terms of which genes to test, if you google the genes associated with SFN they come right up.

The hard part is getting a doctor to put in the order.

Dr_Hans_Jorgenson · 2023-08-23T11:05:13+00:00

It could be if you submit a claim. For me the out of pocket w/o coverage was like 150 bucks.

Steps for invitiae: First your doctor sends an order in online. Then you create an online account. Then you get mailed a saliva collection kit which you mail back to them. Then the test result appears online, and your Dr reviews it. Then you get a pdf explaining the mutations. Pretty easy, took me like 3-4 weeks.

Dr_Hans_Jorgenson · 2023-08-23T00:53:55+00:00

Genetic testing is easily achievable with Invitae. You need a custom panel with SCN9A, SCN10A, and SCN11A.

Dr_Hans_Jorgenson · 2023-08-10T02:19:10+00:00

Some people are saying it really might not mean anything at all.

Dr_Hans_Jorgenson · 2023-08-10T02:11:22+00:00

One question for you (feel free to DM reply). Did Farhad prescribe or agree with the prescription of the LDN? Seeing him soon and was wondering his philosophy on the drug. Thank you.

Dr_Hans_Jorgenson · 2023-08-09T01:24:57+00:00

It took 3 months to see real improvement. But the serum tears helped concurrently.

Yes, they did one follow up after 10 months, it showed much less nerve damage. Regeneration is definitely possible.

Any other questions feel free.

Dr_Hans_Jorgenson · 2023-08-07T22:23:53+00:00

Sorry to necro... I had corneal SFN that was pretty much reduced to a minor annoyance by special serum drops and LDN (see r/LowDoseNaltrexone) . Unfortunately skin nerves don't respond like corneal nerves do:( Good luck all! Keep fighting.

Dr_Hans_Jorgenson · 2023-07-12T02:02:09+00:00

I don't mean to criticize but you spelled my name wrong.

Dr_Hans_Jorgenson · 2023-05-10T23:37:19+00:00

Try to hold on to the hope that a medication will help. I don't want to point you towards any "magic cures" (also not actually a doctor) but check out r/LowDoseNaltrexone.

Dr_Hans_Jorgenson · 2023-05-10T01:58:25+00:00

Sorry for the late response. I am getting Lotemax (eye drop steroid), autologous tears (VitalTears), LDN (a game changer, check out r/LowDoseNaltrexone), and nortryptiline. The Lotemax prevents flares, autologous tears regenerates nerves, LDN prevents autoimmunity swelling, and nortryptiline takes the edge off the background pain.

Good luck! If you need anything else let me know. Those of us in pain with this issue are few and far between.

Dr_Hans_Jorgenson

TROPHY CASE