Going for SFN biopsy

[MTRJ75]

After failing at exercise attempts spectacularly this year & then having  my worst flare up in over a year due to a combination of physical activity and brief sunlight, my neurologist is sending me for a small fiber neuropathy biopsy. 

Although, he says that there's not much that can be done about it even if confirmed. 

Is this true? 

It makes the most sense, since I wake up burning like I was baking in the sun over-night and exercise leads to that same burning and cramping, right before sweating and adrenaline dumps. This might be the largest obstacle for me right now. 

[RecipeForDisaster]

49 minutes ago, MTRJ75 said:

After failing at exercise attempts spectacularly this year & then having  my worst flare up in over a year due to a combination of physical activity and brief sunlight, my neurologist is sending me for a small fiber neuropathy biopsy. 

Although, he says that there's not much that can be done about it even if confirmed. 

Is this true? 

It makes the most sense, since I wake up burning like I was baking in the sun over-night and exercise leads to that same burning and cramping, right before sweating and adrenaline dumps. This might be the largest obstacle for me right now. 

It’s hard to get qualified for IVIG even if the biopsy is positive. I think having something come up on lab work like Washington University (FGFR3 for me - autoimmune) will help. It took me months to get my prior authorization approved, but IVIG is helping the neuropathy. Otherwise, I think they just use meds to help control the symptoms, and I don’t think anything but IVIG truly helps the neuropathy itself.

[MTRJ75]

He never even mentioned IVIG as a possibility. 

I'm not even sure what we're going to do after this. It's funny that he mentioned the best medication he knows of for this is LDN, when I introduced him to LDN about a year or so ago. 

[RecipeForDisaster]

3 hours ago, MTRJ75 said:

He never even mentioned IVIG as a possibility. 

I'm not even sure what we're going to do after this. It's funny that he mentioned the best medication he knows of for this is LDN, when I introduced him to LDN about a year or so ago. 

It sounds very promising. I tried various LDN doses for a few years and didn’t have any improvement. I don’t think I’d do the biopsy without a plan for what happens if it’s positive, though.

[MTRJ75]

Yeah, that was another thought. Been trying to figure out if I even want to do it or not. 

I had some success with 4.5 mg of LDN, but I don't know whether it's been less successful at 5 mg (last 3 months) or something else is causing my recent setbacks. I still believe it's provided great benefit, even if I have to go back down to 4.5 mg, but it hasn't solved all the issues that keep me non-functional on a daily basis. 

[Sarah Tee]

My specialist said we could pursue getting me tested, and, if it came back positive, I might possibly qualify for IVIg.

I’ve decided not to pursue it at this point. I have some numbness on my big toes that appeared in my early 20s (possibly at the same time my OI symptoms began to sporadically appear, so maybe the time of the original autonomic “injury”), but no pain, just occasional hot or itchy feet at night.

The numbness has never progressed and the the hot, itchy feeling is hardly worth mentioning compared to everything else that’s wrong with me.

IVIg might help me overall, but nobody would order it for the level of SFN I have (if that’s what it is).

Maybe the IVIg would help you overall, and that might make it worthwhile exploring the SFN angle.

[RecipeForDisaster]

9 minutes ago, Sarah Tee said:

My specialist said we could pursue getting me tested, and, if it came back positive, I might possibly qualify for IVIg.

I’ve decided not to pursue it at this point. I have some numbness on my big toes that appeared in my early 20s (possibly at the same time my OI symptoms began to sporadically appear, so maybe the time of the original autonomic “injury”), but no pain, just occasional hot or itchy feet at night.

The numbness has never progressed and the the hot, itchy feeling is hardly worth mentioning compared to everything else that’s wrong with me.

IVIg might help me overall, but nobody would order it for the level of SFN I have (if that’s what it is).

Maybe the IVIg would help you overall, and that might make it worthwhile exploring the SFN angle.

That was the thing for me, the SFN started so slowly that I didn’t really notice it or see that it was not normal, and no way was it in my "top ten problems", so I never brought it up. It’s fairly bad now, but I still have many more pressing issues. Hopefully halting my nerve damage is worth using IVIG, but I am truly using IVIG to try to help those more critical issues, one of which is suspected severe autoimmune dysautonomia, even though I qualified for it using my SFN biopsy. That said, I’ve had a lot of challenges with IVIG, from financial ones to infusion reactions, BP drops, and aseptic meningitis.

[MikeO]

18 hours ago, MTRJ75 said:

Yeah, that was another thought. Been trying to figure out if I even want to do it or not. 

I had some success with 4.5 mg of LDN, but I don't know whether it's been less successful at 5 mg (last 3 months) or something else is causing my recent setbacks. I still believe it's provided great benefit, even if I have to go back down to 4.5 mg, but it hasn't solved all the issues that keep me non-functional on a daily basis. 

Whats the cost difference between having 4.5mg and 5mg of LDN custom compounded?

[MTRJ75]

None. It's all the same price up to 6 mg at the pharmacy I chose. 

[MikeO]

8 hours ago, MTRJ75 said:

None. It's all the same price up to 6 mg at the pharmacy I chose. 

Good to hear.

[Sarah Tee]

@RecipeForDisaster, I’m sorry it has come with difficulties. I’ve suffered several ongoing “injuries” from medications so far (even after I stopped taking them), and I’ve only been on lower-risk treatments.

Do I read right that it is helping in general? I do hope so.

I’m a lot less ill than most people posting here, although I have been getting worse for 18 years, and I wonder where it is heading. So IVIg would not be indicated for me at the moment, but maybe it will be in the future. I feel like there is an auto-immune or auto-inflammatory condition bubbling away under the surface. I wish it would just make itself known so I could get onto a targeted treatment.

I also have another problem, had my large bowel removed to treat ulcerative colitis, and the surgery has failed recently after 15 years of working well. If I just had one to deal with, I would probably be able to have a more normal life, maybe do some work from home.

[Sarah Tee]

@MTRJ75, when will you have your biopsy? Is there a long wait?

[RecipeForDisaster]

On 4/20/2023 at 2:31 AM, Sarah Tee said:

@RecipeForDisaster, I’m sorry it has come with difficulties. I’ve suffered several ongoing “injuries” from medications so far (even after I stopped taking them), and I’ve only been on lower-risk treatments.

Do I read right that it is helping in general? I do hope so.

I’m a lot less ill than most people posting here, although I have been getting worse for 18 years, and I wonder where it is heading. So IVIg would not be indicated for me at the moment, but maybe it will be in the future. I feel like there is an auto-immune or auto-inflammatory condition bubbling away under the surface. I wish it would just make itself known so I could get onto a targeted treatment.

I also have another problem, had my large bowel removed to treat ulcerative colitis, and the surgery has failed recently after 15 years of working well. If I just had one to deal with, I would probably be able to have a more normal life, maybe do some work from home.

IVIG is helping my SFN only, so far. I definitely have other autoimmune disease (same, mystery, a few clues like ANA but nothing useful), and we hoped IVIG would accidentally fix those. Hopefully! I would not hesitate to have started IVIG for my SFN years before I did, because the damage might be milder. 

[MTRJ75]

On 4/20/2023 at 2:33 AM, Sarah Tee said:

@MTRJ75, when will you have your biopsy? Is there a long wait?

I haven't been able to schedule it yet. Been dealing with a few additional, mostly non-related health issues the last couple of weeks. 

[MTRJ75]

Got sidetracked with my other issues, but will start calling doctors on this Monday. I'm really beginning to fear I have the triple whammy: autonomic, small fiber & peripheral neuropathy. I can do some things, but very little without severe consequences. My arms, chest, stomach, legs all light up after minimal to moderate physical exertion.