immune related tests i should order for bilateral paresthesias...gloves?

[waif]

also my rheum told me that low complement levels are NOT associated with pss flares
i guess it's a lupus/secondary sjogren's thing

im going to pursue a lip biopsy even tho it'll probably come back negative
if my eyes weren't SO dry i'd look into ms

my mouth isn't dry at all though

 

[TrixieStix]

s
@TrixieStix i have 2 questions..idk if you'd know the answers to them. would taking plaquenil increase my c3, c4 levels? is that how doctors know it's working? also, are there any sensory neuropathies associated with sjogren's in addition to small fiber? thanks! kind of anxious because i want biopsies and i'm sure they're expensive af. oh well.

if i have SFN, treating sjogren's with plaquenil wouldn't help with that right? i guess people with sfn are screwed, idk.

My IgG's are also normal. I found this article that I think might have some helpful information for you. It talks about treatments.

http://practicalneurology.com/2017/04/small-fiber-neuropathy-in-sjogrens-syndrome-a-review/

 

[TrixieStix]

@waif Since we last spoke I have been diagnosed with a very rare autoimmune disease called "Relapsing Polychondritis". Like ME/CFS it also has no biomarker so none of the usual autoimmune blood tests can detect it. It was only just 4 months ago that I developed the obvious outward constellation of symptoms that are unique to the disease. It is also almost certainly the culprit behind my symptoms that had until now been diagnosed as "ME/CFS" including the PEM. RP however is not known to cause SFN.

Many RP patients also have at least one additional autoimmune disease on top of the RP. So it may be that I also have Sjogren's which could explain my SFN and my sicca symptoms. Many RP patients also develop vasculitis so that's also a possibility. I have not been evaluated for vasculitis yet. The RP is the most important thing to address first as it is a serious, progressive disease that can lead to death. Typically treatment consists of daily Prednisone and immunosuppressive drugs (such as Methotrexate).

I am lucky in that one of the few RP specialists and researchers in the country is near me in Seattle and I have my 1st appointment with her at the end of next month. I hear great things about her so I'm anxious for the appt. The rheumatologist who officially diagnosed me a few weeks ago started me on daily Prednisone, but I have yet to start on a DMARD. Everyone with RP responds to treatment different so it remains to be seen how I will respond to them. The treatments themselves can cause problems (especially long-term Prednisone), but RP if not controlled can kill you so it's necessary to be on treatment even with the risks. It's all a bit surreal. The doctor who diagnosed me said I am a great example of "Hickam's dictum".

here is my thread on S4ME about it all...
https://www.s4me.info/threads/i-may...disease-called-relapsing-polychondritis.1224/

 

[waif]

thanks @TrixieStix
will reply in a few days, just got my 23andme results back so my brain..is...worn out

 

[waif]

@TrixieStix I agree, you need to treat the RP first. your sx to me sound like sjogren's. sjogren's is pretty specific and i have no idea about vasculitis. you're so fortunate to live near a rp doctor and to find a rheum who takes you seriously! travelling wears all of us out. You could post your link in your signature

i'm scheduled for a lip biopsy but i just stumbled upon something really obvious, SFN is associated with EDS, all types, even though it's not an AI disease. i don't even need to have sjogren's to have sfn, lol. i had a qsart test come back negative but now i'm thinking i should get skin biopsies too. i have no idea what they would cost, a little freaked out about that....

my eyes are so dry though that i need to investigate sjogren's. if they weren't i'd just go straight into sfn. so i'm a bit relieved i might not have an AI disease after all.

something else i discovered, in the beginning of this thread i was obsessed with my TIBC/ferritin. my tibc is at the very bottom of the range and so is my ferritin, indicating some sort of disease. and technically EDS isn't a disease. so my guess is it's either low from sjogren's...(not even sure if this is possible) but also on my 23andme results i have one heterozygous snp associated with hemochromatosis.
https://www.snpedia.com/index.php/rs1799945
c;g
One copy of H63D, carrier of hemochromatosis, likely unaffected unless also C282Y carrier.

so maybe it's affecting my ability to process iron but not giving me high ferritin levels, thank god.


..update...
i'm milking my rheum. just asked for a SFN biopsy too lol. if he doesn't give it to me i have another appointment in may with another rheum, i'm positive i could ask him.

 

[waif]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4940063/

Abstract


Objective:
To investigate the involvement of small nerve fibers in Ehlers-Danlos syndrome (EDS).



Methods:
Patients diagnosed with EDS underwent clinical, neurophysiologic, and skin biopsy assessment. We recorded sensory symptoms and signs and evaluated presence and severity of neuropathic pain according to the Douleur Neuropathique 4 (DN4) and ID Pain questionnaires and the Numeric Rating Scale (NRS). Sensory action potential amplitude and conduction velocity of sural nerve was recorded. Skin biopsy was performed at distal leg and intraepidermal nerve fiber density (IENFD) obtained and referred to published sex- and age-adjusted normative reference values.



Results:
Our cohort included 20 adults with joint hypermobility syndrome/hypermobility EDS, 3 patients with vascular EDS, and 1 patient with classic EDS. All except one patient had neuropathic pain according to DN4 and ID Pain questionnaires and reported 7 or more symptoms at the Small Fiber Neuropathy Symptoms Inventory Questionnaire. Pain intensity was moderate (NRS ≥4 and <7) in 8 patients and severe (NRS ≥7) in 11 patients. Sural nerve conduction study was normal in all patients. All patients showed a decrease of IENFD consistent with the diagnosis of small fiber neuropathy (SFN), regardless of the EDS type.



Conclusions:
SFN is a common feature in adults with EDS. Skin biopsy could be considered an additional diagnostic tool to investigate pain manifestations in EDS.

 

[waif]

soooooooooooo im glad i ordered the genova test
my gastro said post infectious ibs was normal (but she also thought having giardia for 2ish years was pretty normal)

anyways, my genova test came back highly positive for Aeromonas Caviae
i have to find another gastro...i wanted to order bactrim from ADC and just take that but they're sold out

also neeed
to go to a new neuro to get a test for sfn
and get my lip biopsy

i can't handle anymore health problems. it's so overwhelming.
i absolutely think this is related to my complement levels testing extremely low once. chicken or the egg.