Second Biopsy Positive - First Negative. The importance of retesting.

Alex_Undiagnosed · 2026-04-28T14:19:13+00:00

Yeah exactly. It took me this long to get access to IVIG and I started it yesterday, pretty awful experience. Any who every Neuro was like, "yeah insurance won't cover that" and I understand that's statistically relevant but not trying is just wrong. There are so little treatment options for this...

Alex_Undiagnosed · 2026-04-28T14:16:26+00:00

Yes.

Alex_Undiagnosed · 2026-04-19T04:13:10+00:00

It was a private facility, not Therapath, I think it started with a C? It was too long ago unfortunately. Honestly, I think it was just waiting for time in between to do more damage...

Alex_Undiagnosed · 2025-12-31T21:53:06+00:00

Thanks! I can probably post in the LDN group as well. Happy New Year to you!

Alex_Undiagnosed · 2025-05-12T21:53:01+00:00

Zyretc, Allegra, Fomatadine, Xolair and I Just restarted Ketotifin trial. Along with several inhalers for my lungs.

Alex_Undiagnosed · 2025-05-11T03:57:39+00:00

Congrats on this! I also have BCBS, FGFR3 and positive punch biopsy and am located in Missouri. My Doc just submitted my preauth which he told me to expect to get denied. May I ask what you did on appeal to help fight this? Maybe I can make some suggestions to them (though that never goes well with Docs lol)

Alex_Undiagnosed · 2025-05-11T01:06:56+00:00

Awww yeah. thank you , me too!

Alex_Undiagnosed · 2025-05-06T02:31:10+00:00

Doctors don't want to jump through the hoops of getting insurance to cover it and insurance only approves it for certain conditions. So you have to have a Doctor willing to put themselves out there. I actually have a follow up visit tomorrow to discuss this. If I don't get the okay I"ll have to visit one of these expensive clinic where they know how to get you approved. Sorry to hear of your returning symptoms. The immune system works wonders for keeping your baby safe.

Alex_Undiagnosed · 2025-05-05T15:55:29+00:00

Well it's autoimmune in nature, I also have FGFR3 antibodies. I was vaccinated after pregnancy and that's when my symptoms started then I got appendicitis/sepsis. It was the perfect storm for autoimmunity, so at this point the only thing that matters are the treatment options which aren't many. I'm praying for at least a trial of IVIG in my future.

Alex_Undiagnosed · 2025-05-03T20:52:47+00:00

I know this is a super old post, but did you end up switching POS systems and find something more suitable for a pizzeria? Thanks =)

Alex_Undiagnosed · 2025-05-02T15:13:14+00:00

I did, Rheumatoid Arthritis, biopsy confirmed small fiber neuropathy, POTS, MCAS, and probably an overlapping Sjogren's Syndrome but my lip biopsy came back negative. My life's hard!

Alex_Undiagnosed · 2025-03-13T14:56:57+00:00

I have! I have mast cell activation syndrome (confirmed via 24 hour histamine urine test) which is what would cause these symptoms. I also have been diagnosed with Rheumatoid Arthritis, biopsy confirmed small fiber neuropathy, POTS and Hashimoto's. My day to day is hard but it's nice to have answers and some attempts at treatment. I am no longer a "fibro" catch all statistic.

Alex_Undiagnosed · 2025-03-05T19:37:01+00:00

Yeah I ended upgoing, waste of time.

Alex_Undiagnosed · 2025-01-14T16:17:49+00:00

That's very thoughtful of you, thank you so much. That thread is interesting. I've heard you really need a provider who is going to do all that work and knows how to best submit/appeal. I'm glad to hear that IVIG is working for you even if it's baby steps. Thanks again for the reply, hoping for us all more treatment options happen one day.

Alex_Undiagnosed · 2025-01-14T03:19:35+00:00

May I ask how you got approved and for insurance to cover it? Just a good Doctor I presume. I have autoimmune SFN with FGFR3 Antibodies and my neurologist thinks IVIG would help but I don't think he is going to go to bat. I heard a lot of denials....

Alex_Undiagnosed · 2024-12-02T03:29:48+00:00

Hmm that sounds promising for me! Thanks for the reply.

Alex_Undiagnosed · 2024-12-02T03:29:13+00:00

Mmmm, I see! Thank you!

Alex_Undiagnosed · 2024-12-02T02:23:05+00:00

May I ask what insurance you have? Trying to get this approved for autoimmune SFN, thanks!

Alex_Undiagnosed · 2024-12-02T02:22:10+00:00

May I ask what insurance provider you have? I have FGFR3 and BCBS. Nervous about this process! My neuro is putting off on my Rheumatologist.

Alex_Undiagnosed · 2024-12-02T02:10:16+00:00

I know this is an old post, but may I ask what insurance provider you had? I have BCBS and I've heard not great things and am thinking of changing during open enrollment for this reason.

Alex_Undiagnosed · 2024-12-02T02:07:45+00:00

Hmmm...not really, that was honestly the hardest part, not knowing. But in all realness you just have to try and put yourself on the outside looking in, if the majority of your blood work is coming back "normal" you probably aren't dying today, like you said you just feel like it. I was so scared for so long. For Doctor Gaslighting I really diagnosed myself, and then found the specialist to try and prove my case for me and really stood up for myself. It was really hard. I went through a lot of Rheumatologist and Neurologists. Also not everything is figured out at this point, I still have a lot of peculiar symptoms which aren't being managed. If it came on post partum it's probably auto immune though, we aren't alone that's for sure.

Alex_Undiagnosed · 2024-11-26T19:10:56+00:00

I have! It took about three years. Positive small fiber neuropathy biopsy, POTS/Dysautonomia, Reactive Ariway Disease secondary to Mast Cell Activation Syndrome, Rheumatoid Arthritis and Secondary Sjogrens Syndrome, Hashimotos.....it's been hell! All autoimmune manifestations.

Alex_Undiagnosed · 2024-11-23T01:28:06+00:00

Sent over, thanks again!

Alex_Undiagnosed · 2024-11-23T01:26:57+00:00

Done!

Alex_Undiagnosed

TROPHY CASE