Finally reached the end of searching and although it’s bittersweet, it’s time to move forward, plus other updates.

[JennaShi]

Hi all, I got the results back from my two tests and they were both negative. One was the neuropathy panel from Washington University (TS-HDS and FGR3 i think it’s called) as well as ganglioside antibodies and the other was antibodies i had previously tested negative for. The weird thing is that they were all zero, including the ganglioside antibodies which i had tested positive for previously.

Talked with my doctor about it and she validated my concerns by saying tests results are and can be affected by the medication I’ve been on and or could be in-sensitive tests. She also validated that I have multiple autoimmune issues including positive Ganglioside antibodies (surprisingly) as well as hyper mobility issues and that it’s not worth looking any further into what the cause might be.

This is bittersweet sweet because I wish we would’ve tested for these antibodies by Washington University before starting any medication. Fortunately both medications (Hydroxy and Gabapentin) are helping improve quality of life so there’s no use in continually dwelling on the past and, I’ve found my causes to my small fiber poly neuropathy!

Gabapentin helps calm the intensity of the burning and pinpricks (nothing for paresthesia) and helps with gastric emptying. Worsens word finding and forgetfulness.

Hydroxychloroquine helps with fatigue, and surprisingly my calf leg pain issues rarely occur after being consistently on Hydroxy. This is something my Rheumatologist Dr. Taylor, explained as part of my connective tissue autoimmune issues. I would consistently go to my primary and neurologist and they would check my legs for DVTs but I would be clean and never could find an answer. I went off Hydroxy for a few days as I ran out and didn’t know it wasn’t automatic refill and the symptom came back. I’m grateful this symptom rarely occurs! Also don’t have as much random vertigo, yay!

I’m grateful for my doctors at UCLA, without them, I wouldn’t have the answers I do now.

So the list is now as follows:

Post Graves, now Hypothyroidism

Autoimmune Atrophic Gastritis

IBS

Small fiber poly neuropathy

Autonomic neuropathy

Ganglioside antibodies positive

Physiologic Aniscoria

UCTD, pre Lupus

Raynauds

Cardiolipin antibody positive

Thrombocytopenia (not ITP yet thankfully)

Central Sensitization syndrome

Fibromyalgia

Hyper mobility syndrome (possibly HEDS tbd)

Been trying to move my body more in hopes of less pain (still in progress)

On a side note, signed the girls up for alot of day camps and an overnighter. So far this has proven/ will prove to be so helpful in giving me a break and keeping them active and busy all summer!

[KayHimm]

Jenna -

I actually think you are in a pretty good place diagnostically. Based on my recent experience with these neuronal antibodies, it is better for them to be negative. The one thing positive results can do is make it easier for neurologist to get IVIG approved.

They know autoimmunity is underlying your problems, so they can treat you properly now. That is great you are having such a good response to treatment.

By the way, some studies are showing a link between anti-cardiolipin antibodies and neuropathy. I have low and non-persistent antibodies with autonomic neuropathy. I bet there are people on the forum with this. We could almost be a group case study.

Best of luck. You have made a lot of progress.

😍 k

[JennaShi in reply to KayHimm]

Thank you Kay, I think so too. It would just be nice to have known before hand I guess but hey, you're right and it is what it is.

Oh wow, I had no idea and will have to look that up, I am encouraged to hear this about Cardiolipin Antibodies! Do you mind if I ask which ones you've had? I've been told Titres go up and down with disease activity, and wonder if this is what you're experiencing?

That would be great if we could; it might help them to learn so much more.

Thank you, I hope to continue on moving forward and hope you will as well.

[KayHimm in reply to JennaShi]

The anti-cardiolipin antibodies are ones that caused women with lupus to have false positive tests for syphilis originally. Graham Hughes in the 1980s discovered the antibody that causes this paradoxical result. That is the anti-cardiolipin antibody which is commonly tested for now. It can be positive in lupus and APS.

I had the false positive test for syphilis and was later positive at low level for anti-cardiolipin. It is usually negative. I do have autonomic dysfunction and low level CNS involvement - was actually put on statins for that a while back.

They can rarely say what antibody is causing what in any given patient. But you might want to ask your rheumatologist if she suspects anti-cardiolipin antibodies to be contributing to your neurological issues.

I don’t think they do those anti-neuronal antibodies at the beginning. Not sure why. But I would be surprised if any important information has been lost.

They don’t really follow the anti-cardiolipin antibodies for disease activity like that. They keep an eye out but really focus on treating symptoms whether it is migraine, neuropathy, DVT.

You have done a great job of advocating for yourself. These are tough problems to diagnose.

Xk

[JennaShi in reply to KayHimm]

Thank you for explaining this to me Kay, I didn’t know that they were the antibodies that Graham Hughes discovered that caused the false positive tests. I guess I assumed they were the anti phospholipid antibodies as those seem commonly more checked. I’m excited to know this and will remind myself to check the files in the APS group; i forgot🤦🏼‍♀️.

It sounds like you’ve done some research on this, do you believe this is what’s causing your neurological symptoms? And are you taking anything to help them? Can you explain what you mean by CNS ? I hope it doesn’t progress. If these were to be related to cardiolipins that would make it a neurological issue that progresses and changes through everything just like lupus and APS, is that correct? As opposed to Pernicious Anemia thats symptoms go away in time when you continually pump B12 into the system.

It’s definitely a different way of looking at it. What you’re saying makes sense.

I’ve looked at pubmed in the past and think I remember them talking about disease activity in regards to having clots and them saying it would be minimal compared to anti phospholipid antibodies but never linked neurological ; this is exciting for sure!

[KayHimm]

Yeah, I’ve had these antibodies since the onset like you. They are one of the anti-phospholipids that cause clots and lots of other issues. Low level CNS involvement is just what my rheumatologist uses to describe my weird symptoms 😅. I eventually was sent to a neurologist who learned about autoimmune brain disease from the guy who write Brain on Fire. My MRI showed spots and he sent me to his colleague who specializes in stroke prevention. It is really very confusing! I see both if them for different issues. It said miscrovascular ischemic brain disease on my last MRI request. I guess that is what I have.

I do take statins and those were increased for another reason. They are supposed to help stabilize the micro clots. Seems to have worked. I take Effexor, topomax and low dose aspirin and salt for dysautonomia.

I imagine you have had an brain MRI/MRA. You may get them every so often.

I think all the anti-phospholipid antibodies are associated with neurological issues, maybe some more than others.

The exact way these antibodies do damage is still unclear. They speculate there are multiple mechanisms. My rheumatologist says it is a big dilemma that some people have low level antibodies and big problems and some people high levels and minimal problems.

As I said, it is a complicated area even for doctors - diagnosis can be super hard and patients can look like lupus, NMO, MS or APS. We hear the stories here.

Xk

[JennaShi in reply to KayHimm]

Wow that’s intense, I’ve read about brain in fire and her story! I think they had a movie about it too. I’m sorry that this has been happening to you and it sucks but am so glad they caught it earlier than later.

Also equally fascinating is the antibodies and what you said about being low and having alot of involvement and vice versa. So crazy how our bodies work and don’t work properly. It’s also nice to, although unfortunate, to say we’re not alone or crazy. My neuromuscular specialist hasn’t mentioned anything about these so I’m gonna bring it up too.

Have you felt your quality of life increase after getting treatment? How have things been different?

I apologize for the late response, i think i may have been in a flare due to my period and was in alot of pain all over for the past couple days but am feeling better now.

[KayHimm in reply to JennaShi]

I don’t have the illness that the woman who wrote the book Brain on Fire has. I mentioned that it was her doctor who taught my doctor about brain autoimmune disease.

Sorry for the confusion.

Yes, I am doing better with treatment, but my problems are considered mild.

Xk

[JennaShi in reply to KayHimm]

Thank you, yes I understood what you meant and apologize if I confused you in my response; I found it very interesting and looked further into the research so when you mentioned it I got excited. I think it’s amazing that her doctor trained yours, I don’t know much about him but I can only imagine what it must’ve been like to learn under him!

That is wonderful, by this I mean that catching it earlier rather than later and being checked in on by your doctor is so great in order to hopefully stop it from progressing more quickly and pass along more information for other doctors as to what has has been working in order to help other patients and give them more options too. We have come so far and still have more to learn.

[StriatedCaracara]

Only seen rheumy once. He reckons I have UCTD possibly.

I relate to some of your list. The neuro aspects.

Thanks for your posts Jenna - they are helping me a lot.

Hope that things are getting sorted out more