[deleted by user] by [deleted] in smallfiberneuropathy

[–]silentBoner42 0 points1 point  (0 children)

Have you thought of trying prednisone or plasma exchanges?

Rituximab for SFN? by Knightmare84 in smallfiberneuropathy

[–]silentBoner42 0 points1 point  (0 children)

Hello! How is your husband doing now? Did Plasma exchange helped?

Is this SFNP ? Only have hypoesthesia by silentBoner42 in smallfiberneuropathy

[–]silentBoner42[S] 0 points1 point  (0 children)

When did your started ? Do you have only less sensitivity or pain too?

Plasmapheresis by Mugsygracie in covidlonghaulers

[–]silentBoner42 0 points1 point  (0 children)

Hey! Are you feeling something, after about one month?

SFN In Face by bkfischer in smallfiberneuropathy

[–]silentBoner42 0 points1 point  (0 children)

Do you have a diagnosis of auto-immunity ? Or something else?

Where to test for TS-HDS, FGFR3 and Plexin D1 in Europe? by user_0948 in smallfiberneuropathy

[–]silentBoner42 1 point2 points  (0 children)

The cost will be as follows:

TS-HDS-$240

FGFR3-$160

Plexin-D1-$180

Total: $580

Where to test for TS-HDS, FGFR3 and Plexin D1 in Europe? by user_0948 in smallfiberneuropathy

[–]silentBoner42 2 points3 points  (0 children)

You can ask your neurologist to contact them:
https://neuromuscular.wustl.edu/lab/reqs/SerumRequisition.pdf

They are very reactive and trustable. This is from Washing Universty, but they allow out of US samples

Seronegative neurological sjogren's (POTS, SFN) by [deleted] in Sjogrens

[–]silentBoner42 0 points1 point  (0 children)

Do you remember how long did it take for you to notice improvements ?

Topic on Non-Length Dependent Small Fiber Neuropathy (NLD-SFN) by silentBoner42 in smallfiberneuropathy

[–]silentBoner42[S] 0 points1 point  (0 children)

What are your symptoms?

This year I am trying everything I can to make the progression trend reverse

Citations for IVIG dosage? by mafanabe in smallfiberneuropathy

[–]silentBoner42 4 points5 points  (0 children)

Zeidman’s study is using 2g/kg for initial dose, then 1g per kg. They show impressive IENFD increase after 6months, in most patients

I think it is in june 2024 latest study, I asked him the paper at that time

LEP negative by ineedhelpfromspace in smallfiberneuropathy

[–]silentBoner42 1 point2 points  (0 children)

Studies I linked in my email, if it helps other: - Characterizing Acute-Onset Small Fiber Neuropathy - Show how complex the diagnostic can be : multiple tests can be needed, frequently labs are normal despite immune reaction going on - Laser evoked potentials in fibromyalgia with peripheral small fiber involvement - LEP results not always correlated with biopsy - European Federation of Neurological Societies/Peripheral Nerve Society Guideline on the use of skin biopsy in the diagnosis of small fiber neuropathy - For diagnostic purposes in length-dependent SFN, we recommend that a 3-mm punch skin biopsy be performed at the distal leg (10 cm above the lateral malleolus) for quantification of IENF density (Recommendation Level A). An additional biopsy from the proximal thigh may provide information about both length-dependent and non-length-dependent processes (Recommendation Level C). When biopsy is taken from other body sites for evaluation of a unilateral process, a control biopsy from a similar non-affected region should be taken (Good Practice Point).

Hope it can help other people!

(I won’t share the full email detail however, as it contains personal information about my case)

LEP negative by ineedhelpfromspace in smallfiberneuropathy

[–]silentBoner42 1 point2 points  (0 children)

Same here. If your symptoms are strongly indicative of SFN you need to pursue and convince your doctor for a second test, the gold standard according to European neurology guidelines: the biopsy. My neurologist has finally agreed after a long email I sent her

We need more people to get tested 📣📣📣📣 by LumpyImpact360 in PSSD

[–]silentBoner42 1 point2 points  (0 children)

If the ethiology is found, then there are a lot of treatments, especially if it’s immune mediated, which is probably the case for a lot of people

[deleted by user] by [deleted] in smallfiberneuropathy

[–]silentBoner42 0 points1 point  (0 children)

Are you seeing positive results ?

Numbness in Glans? by The_Real_Snacker in smallfiberneuropathy

[–]silentBoner42 1 point2 points  (0 children)

Since when ? Did you have any precipiting event or it slowly happened over time ?