Hi all, haven’t been on here in short while but thought I’d share an update and ask a question. It seems my new neurologist found I have positive ganglioside antibodies. I was able to get the results from the lab and posted a picture here.
Does anyone else have these antibodies?
After doing some research it seems that there is one type that is connected to UCTDs and others that are connected to other things such as gullian barre and cidp and other things but there is also an association to either monoclonal or polyclonal gammopathies depending on the disease.
On a side note I’ve not been well, frontal headache involving my eyes, nausea along with weakness in arms/ shoulders with burning and legs (burning weakness and pain) as well as general pain heightened fatigue and sensitivity to touch and feeling warm with no fever. I’ve tried to be careful in regards to covid and just wasnt sure if this was a cold or to get tested for covid or if this is some weird flare? Took two rounds of two advil to knock out the headache and in bed all day but body stuff still about the same. Anyone have similar issues from time to time? My husband said he didn’t think it was covid and not to test. Sometimes it’s hard to know when you experience their general symptoms chronically and when they’re heightened and you’ve been careful, what to make of the situation 🤷🏻♀️? This is new territory.
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JennaShi
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I think these are one of the rare neuro antibodies. Have you been diagnosed with neuropathy? I can’t remember. The symptoms you describe do not sound like Covid but more nerve related. You might want to contact your neurologist about the weakness and burning.
I recently had some neuro antibodies tested for association to autonomic dysfunction. Just checked and they are different ones.
Hi Kay, I tried checking health unlocked and it seems only one person has mentioned them but will keep checking around. Yes, I was diagnosed with small fiber poly neuropathy so I’m a bit confused in that respect too? There’s just alot I don’t understand.
That’s a relief to hear, and I will talk to them, thank you.
Which ones did you get tested for and how did it turn out? If you’re interested in looking into this test as well I believe it’s called either sensory neuropathy or neuropathy profile test with recombx.
One person - that is amazing. These are all pretty rare disorders, I think. Here are the labs being sent to Mayo: anti-thyroid, paraneoplastic (anti- RI), Voltage-Gated K Channel AB, NMDA receptor ab N - methyl-D-Asperate receptor Ab IgG, Glutamic Acid Decarboxylase Antibody. Hard to write and impossible to understand. 😅. Will have results in two weeks.
My doctor is doing them to get authorization for IVIG. It may be a good thing you have a positive antibody. IVIG is effective in autoimmune neuropathy but hard to prove and hard to get.
What in particular are you confused about regarding the neuropathy diagnosis? I and others can try to help.
Wow have not heard of most of these, Thats wonderful that your doctor is testing these for you and working on getting you ivig. I’ve heard it’s a good treatment but didn’t know it is useful for neuropathy too, that’s awesome! Another good way to check if you haven’t is dna genome sequencing. There’s a free test through Ambryn or Ambryan Genetics. They work with genotek make a saliva kit that has three options: hattr hereditary Amyloidosis, 81 neuropathy profile (including hattr), and cardiology Profile.
I hope you get some answers soon and get your treatment.
I guess I’m confused because these seem like larger fiber nerve tests. My emg was normal outside of some sort lag (not sure what that means) but he (Neurologist) also had a hard time keeping me warm with the heat.
I wish I could be more helpful with the neuropathies. It sure is confusing, right? Now we know why neurology is a whole separate residency track!
It is only my automatic nerves that are affected, so my tests would be different. Your neurologist knows what he is looking for. I look forward to hearing his interpretation on this positive antibody you have. Very interesting.
Hang in there, Jenna. You are a challenge for these doctors!
That’s alright :)! It sure is, and trying to remember everything 😅. Yeah it makes more sense now!
Got it. Did you mean automatic or autonomic? I wish you the best and am hoping you get answers and relief soon💗.
I will keep you updated and look forward to them figuring out the puzzle! Hopefully this will explain alot. We were recently approved for foster care and have to share all of our health issues; i hope this isn’t something that wont he a deal breaker as I have been looking forward to this for many years!
Hi Jenna. Your antibody test definitely shows antibodies associated with neuropathy. I think KayHimm shared a lot of great information. IVIG would be treatment of choice if you’re having neuropathic symptoms. These can be evaluated by a neuroimmunologist - like a neurologist that specializes in autoimmune neuro disorders like MS, CIDP, ALS.
I have all of the symptoms that you’ve described with regard to burning extremities, feeling hot, etc. These symptoms are exacerbated when it’s my time of month. In regard to your legs and arms burning, has anyone checked a CK?
I’m sorry you’re having these symptoms too, have you also tested for these?
Does it happen in other situations too or primarily your time of the month? That’s so interesting and I think that that is very observant of you to notice, do you think it’s maybe hormone related also?
I will definitely talk to them. My male neurologist referred me to ucla to a nuero muscular specialist and she’s the one that tested me. I will be talking with her on October 2nd and will ask her.
Can I ask you a few questions? And that’s okay if you choose not to answer:
1. I noticed three antibodies showed up positive and one was just three away from being equivocal, do you think they all point to maybe the same thing or is it possible I’m dealing with more than one issue here?
I’ve looked it up and I just don’t understand alot of it.
2. Is this possibly more of a confirmation of the uctd and or anti phospholipid syndrome?
3. Do you understand what this means if I have a normal emg (neurologist notes a lag) but am positive for small fiber neuropathy? I thought alot of these may be related to larger fibers?
Hi Jenna. It happens all the time but just more pronounced during my time of month. This is common for many women with lupus but the link between lupus, autoimmune disease and hormones is controversial.
As for your questions....
1. I can’t answer this unfortunately, but the neuro muscular person will 100% be able to help answer this question.
2. No, this is not confirmation for UCTD or APS. Beyond labs, both require clinical criteria for diagnosis.
3. EMG rules out large fiber neuropathy. If it’s normal then that’s great news! Your muscles are not being effected. But your small fibers are concentrated in your extremities, ganglion and at neurovascular bundles. Small fiber neuropathy can cause some of the symptoms you are having.
Wish I could be of more help. I’m glad they found these antibodies earlier rather than later and I hope you gain more clarity as time goes on and you see more specialists. Keep us up to date on progress! ❤️ xx
That sounds rough, I’m sorry, like a double whamy during the time of the month. I hope that you are getting pain relief. Pain is a hard thing to deal with. Lots of hugs sent your way💗💜.
Thank you, in regards to your last question, I haven’t been tested in my arms for emg or biopsies (legs almost a year ago?), and am unsure what ck is, creatine kinase? If that’s it, I’m unsure, I have had the creatine blood test. Recently saw another rheumatologist and she labeled me as uctd and had my first weak positive cardiolipin antibody test so I am unsure if this information would be helpful to her or not as far as further confirming that my sfpn may be related and this is one way to show it?
I will definitely talk to them both and see what they say. I agree, so good to find out earlier than later. Thank you again, I will keep everyone updated and hopefully get more answers soon.
I get these symptoms and more, I can relate to headaches and get ones over eyes ( I have a eye drop which swells with face, bruisings dry eyes then on occasion sticky eye) bouts of nausea and appetite loss, gastric probs,urinary probs,numbness, burning, itching , weird non lasting rashes, ulcers and for first time last week sores on noo noo ( now going thankfully).tendon probs 🤷♀️ Joints, muscles , weakness cramps, intermittent toes will not bend or can’t move foot up or down hands that sometimes can’t straighten, can’t close fist swollen hard fingers , Raynaud’s looking, little white hard lumps under skin palm side , red velvet shiny palms, wrinkly like in water too long,fingers that pull to little finger sideways, hard knuckles on few, ( used to go chalky) little finger right shakes, Ankle shoulder wrist neck , knee pains, fatigue, stamina probs, temp intolerances, Tinnitus I’ll stop there but list incase you relate.
All crazy making probs that just occur all intermittently but constantly , some not intermittent.
I was told fibro fnd but I won’t go there.
It sounds like a hypochondriac list but sadly it’s real . It makes me wonder if years of being told fibro it was all this building up, or if that is alongside 🤷♀️ But this is not. I’m not a doc but it doesn’t add up. I have better days on occasion, a week had been the most I get a couple of days normally free from certain things then bang. I’m confused as I can’t link things together, I can’t think of anything that sets it off, food drink etc, after periods of inactivity when it seems to flare I try to walk and do more incase it’s conditioning but makes no odds. Ie the bouts of breathlessness and thigh pains walking, I thought if conditioning I will push more and do more to rectify but it just doesn’t, so I’m at a total loss. Too date my bloods have apparently been normal except vit d iron and inflammation though I am under neurologist now and hoping he can help find answers as it’s finding someone interested in helping.xrays scans etc were not productive but that was near two years ago and wonder if they’d be the Same and nerve test a year ago but 🤷♀️ Symptoms just worsening slowly overtime so who knows. I don’t take anything other than odd painkillers, I was on statins reduced dose incase it was causing muscle probs, it made no difference when I stopped them and when going to order at chemist after years of doing they said they can’t see ive ever had them contact gp but I just can’t deal with all this incompetency and with covid and go didn’t bother.
Sorry such a long reply but maybe you can relate to some symptoms 🤷♀️
I agree if we were to contract covid would we know with such symptoms 🤷♀️
I’m sorry you’ve been experiencing all of these symptoms, that sucks! Not to mention being told over and over that it’s only fibro. I can relate as I’ve been referred to two other rheumatologists and seen three nueros and being told that it’s not another autoimmune disease. It takes time sometimes for our body to develop a more clear picture and sometimes we’re going to see more than one doctor. I hope that this neurologist tests you for more things and I hope you feel comfortable taking ideas from all of us on here to ask to be tested for if something sounds familiar, this is what I have done and these people are kind and wonderful. If your emg comes out normal ask for a skin punch biopsy as the test looks at small fiber nerves, something the emg wont pick up. If he doesn’t know I hope that he’ll refer you to someone more knowledgeable so that you can get the care you need. Hugs💗💜
Thankyou yes I will wait to see what he has to say and go from there, yes most certainly I’d be list with all you kind wonderful people on here . Fingers crossed 🤞 bee both get some answers , I’ve seen two rheumys this is my first dealings with neurologist , and I’m hoping he may help or like you say if he can’t refer me elsewhere as I would really appreciate some help with things . I’m comfortable taking ideas 👍 I just don’t quite have the understanding of many of you regarding tests but Thankyou I understand that one 😂Best wishes Thankyou for reply 🤗
They’re the pros, I just read and learn from them and try and retain it 😅! I’m so glad you joined and this is great then. The first one I had seen he basically just repeated everything I said and came verbally to the conclusion that we wouldn’t need to see each other again and I happily agreed 😂, didn’t wanna see someone who wasn’t going to make effort to try and understand me! Second guy was rough around the edges and not very social but he took the time to listen even if my ideas sounded appalling to him and tried it out; so thankful he did!
I hope you have a good experience and if you haven’t already, something Ive learned from others is to take lots of pictures and document symptoms. I’m one to get nervous in appointments so this has helped me tremendously, especially with the second neurologist as he didn’t believe it till he saw proof. I hope that he also explains this to you, I found that when I communicated with him that I don’t understand or have a hard time remembering he would try and make the effort to explain better. I know everyone is different and I hope that he or she really takes the time to listen to you.
👍😂 there’s my first hurdle I have trouble retaining. 🙈 I moan about the things I don’t understand ( symptoms) but I’m bad at playing things down and family say I don’t complain enough, but I’m good with pain and a coper. That’s where diary keeping and photos have helped, a bit like childbirth, you quickly forget when it’s passed until the next one and as swellings rashes and stuff come and go the photos help. This helps me personally and hoping it helps if I go and things are down rashes etc. This has been the best advice.
I see two rheumys and complained about first as wrote saying he’d done tests he hadn’t and then the next was awful( his colleague) .
Now I have been taught from on here to let it go and move forward so I am following advice, but would be a liar to say it’s easy.
The neurologist I’ve only spoken to once, thanks to ent doc who referred me after sending me to facial who said I should see neurologist sooner rather than later. Ent doc was excellent, I wish he was a neurologist, he showed interest just out of his field. Dermy team said I should see neuro and would try to push it urgently but covid happened.
Most gutted by rheumy as symptoms not denied, and warranted lots of quick tests but as no answers just signed off with fibro , they could have referred elsewhere . I took my husband one day for support, rheumy came to call me in , see I was with him and went off and got someone to come in with her. I believe to this day my complaint held against me and lengthened this road I’m on, worse I’ve gotten worse health wise.
Neuros first words were I had been referred to him mainly because of my face and I was a bit upset but hey 🤷♀️ He asked what my symptoms were and kept asking anything else and had obviously looked at history and family as he asked about my brothers md. he said he would like to do tests, and a lumber and genetics. He’d like to see me but not yet ( height of pandemic).
He seemed interested so I’m hopeful he will be 🤞he seemed to listen and had an agenda 🙏
I Hope I get one like you, 🙏I’m a mess when I speak to them, very nervous I’m left nervous from rheumy , gp experience, I’m scared of crazy symptoms making me sound hypo but I did say to him , I know it seems a few problems ( when he’d asked anything else) but you did ask and I can only tell you as it is. He was understanding. So time will tell, I have no present reason not to trust or put a bit of faith in him so at least I’m moving forwards.
Thankyou for your kind reply and support, and best wishes returned 🤗
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