[Droffi627]

Hey all,

Very happy to have found this website. I'm a 32 year old female, no kids, otherwise pretty healthy except for some current issues. I recently have been experiencing some weird neuropathy in my face and mostly my left arm and leg. Burning, tingling, joint pain. This all started after I had a laparoscopic cholecystectomy (non invasive gallbladder removal) in July of this year. I was fine after about a week but as I approached 1 month, dizziness, nausea and all the weird tingling came on along with severe fatigue after gardening one afternoon. I saw my GP who worked me up for ANA, Lyme, checked thyroid, basic met panel...all normal (although I do have a B12 deficiency and had a shot of it a few days prior, its been in the low 200s before). I even had an MRI done to check for a retained gallstone. Nothing.

Referred to ENT, who said it was migraines. Then referres to Neurology, who said it could be small fiber neuropathy based on my symptoms, my pupils, flushed skin that comes and goes and high flexibility in my wrists and fingers. I also have psoriasis and have had this for years. I'm going for a skin biopsy 10/24 but had blood work done 2 weeks ago. All has come back normal except high IGg, high cardiolipin, low vitamin D and most recently, a positive striational ab. The doctor usually sends a note with results but with the striational one she did not. However she said she wanted me to repeat labs because some was not resulted due to quantity. She actually told me initially she preferred to have me do blood work in her office because its so specific but I work in a hospital so I asked if I could do it there. She said fine but in the end, she was right lol (lesson learned).

So far what I know is she thinks I may have antiphospholipid syndrome, which could be causing the small fiber neuropathy. My question is why would the striational ab be positive but everything else negative? I researched that antibody and its mostly related to Myasthenia Gravis or a thymoma. But I don't have any facial drooping, I don't have that extreme fatigue (I went on vacation so I'm chalking that up to a stressful job and home life - mother in law lives with me, enough said lol), I feel pretty okay except for dizziness here and there, muscle twitching sometimes and some joint pain. Is it possible that the test wasn't done properly and it could be a false positive?

I appreciate any and all advice. Thank you!

[kiwi33]

Hi Droffi627

Welcome to NeuroTalk .

I hope that members will be able to come up with helpful ideas for you.

Do you know if the striational antibody titre was well outside the reference range of the lab which ran the assay or only just? Apart from that a retest might be an idea to check for reproducibility.

Best wishes.

[Droffi627]

Thank you so much!

Normal range is <1:120. Mine came back <1:240.

I'm still waiting to hear back from my doctor, she doesn't seem too concerned or else I think she'd have called me rather than just drop the results with no explanation (at least I hope she would!)

I spoke to a few of my colleagues and they said it could have come back false positive due to not enough refrigeration time, the vile being shaken during transport to an outside lab... I'm just trying to make sense of it all since all I'm reading is it may sometimes turn out positive in people with MG but seems to be in conjunction with something else coming back positice as well, like ACh Receptor.

[kiwi33]

Originally Posted by Droffi627

Normal range is <1:120. Mine came back <1:240.

That looks like the results of an ELISA. Usually an ELISA is done with binary dilutions of the test sample (your serum in this case).

Your result is only one dilution outside normal so I would not be that concerned about it.

[Droffi627]

Interesting. I never heard of that test before. Learn something new everyday lol I really appreciate your input, I feel a little more at ease. Thank you!

[Desha83]

Hi! I have this antibody also, but no others. My result was also <1:240. Did you find out anything about yours? I’m panicked about it.

[kiwi33]

Desha83, you could ask for a retest. If the ELISA titre is still <1:240 or less there is probably nothing to worry about but if it is greater it might be of some concern.

[Desha83]

Originally Posted by kiwi33

Desha83, you could ask for a retest. If the ELISA titre is still <1:240 or less there is probably nothing to worry about but if it is greater it might be of some concern.

Thank you for your reply. This test was done at the end of September, my next appointment is in February so I will ask for a retest then. After this result, I had a ct scan of chest, abdomen, and pelvis and everything is fine, no cancers or thymoma found. I do not have the symptoms of MG. Is there any other reasons that you know of that it would appear by itself?

[kiwi33]

Asking for a retest in February is a good plan.

False positive immunoassay results are quite common in possible autoimmune diseases. When they happen the results are marginal and turn out to be of no clinical significance.

[Droffi627]

I'm so sorry I haven't been able to respond. The antistriational antibody led my neurologist to send me for a CT Scan of my chest to rule out a thymoma. Luckily, CT came back normal and myasthenia gravis wasn't even entertained. Before I could even finish saying I thought I had it, she told me "absolutely not." And she was right on that front. She said it could be related to something autoimmune, and I do have psoriasis.

However, here I am a few months later with the same symptoms. Still having that weird numbness that isn't really "numbness" - I can still feel my hair brush against my face or if I make direct contact with my skin with say my hands, there's no loss of sensation. It's more like a burning? It's a very weird sensation and it comes and goes mostly in my face and arm.

Ontop of this, I still have sensitivity to bright lights. Developed floaters. Still feeling light headed. Not as dizzy. I was just about to go for an MRI of my brain when I found out....

I'm pregnant! 9 weeks now. Needless to say, the MRI has been put on hold lol

But now I'm left with no answers. Again. My neurologist performed a skin biopsy on my right leg which came back with significantly low epidermal fiber density but never actually explained the results to me, just mailed them. On my thigh, it came back at a 3.1 - range is 2.0 - 3.6. My ankle came back 2.7 - range is 1.8 - 3.6. Not sure how that translates to significantly low but then again, my neurologist switched practices and never called me. Why do physician's do this????

I keep thinking I have something extreme, like MS, and I'll never know because I never went for the MRI. And I certainly don't want to be sick when my baby makes its arrival. I want to feel like my old self, before my surgery and before all these weird things started happening to me. I'm hoping it just gets better with time. I dunno what else to do.