PisForPerseverance
Senior Member
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Antibodies (so far):
What investigation did you do that led to finding those antibodies?:
Type of treatment:
Helpful?:
vgkc, ganglioside gm1 igg, anti tubulin with elevated cam kinase, ts hds, ana 1:180 fine speckled pattern
Conditions associated with these antibodies: undecided. Pending further investigation. Seeing two specialists soon, the head of the neuromuscular department at university, that specializes in determining types of neuropathies. And another neurologist at university, that specializes in autoimmune encephalitis including PANS and PANDAS which happened to me (pans, maybe the subset pandas) at 17
Previous to getting these results, my interpretation I came to recently was that I got infectious encephalopayhy and/or post infectious autoimmune encephalopathy, perhaps different pathologies from different times (17, then 8 years ago, and perhaps 6 years ago). This is because of what I've learned on PR and my research based on it, and from going over my symptoms onsets throughout my illness as i wrote them down recently. A new doctor I just saw, an ME doctor, before I got these results, agreed and on a note wrote (our first appointment) among his other notes "She has very clear and long history of neuropsych/neuroimmune illness and given her infection history and specific sx, I am very suspicious of PANS like illness, post infectious autoimmune encephalopathy." We were awaiting these results from panels I requested getting a few weeks prior (from a different doctor) to see how to proceed. He also just ordered me a couple more antibody tests based on the antibodies that were identified. Early sjogrens panel (negative for sjogrens so this might be different or it's a repeat), antiphospholipid syndrome diagnostic panel, dnase b antibody, and antistreptolysin o.
Vgck and anti tubulin (with elevated cam kinase) will be investigated to see the role they may have played and be playing (I don't know when I got them), in autoimmune encephalopathy and anything else.
I will post my symptom onsets throughout the course of my illness that I have a list of, as a blog post so that people can reference the antibodies showing positive and compare with their symptoms. But it doesn't mean that the antibodies I have now are the same ones that may have been present with the possible autoimmune encephalopathy onsets in the past, or that I have all of the ones I may have had in the past (I have a suspicion I had more) especially since I've had lots of improvement in some neurological symptoms but still a ton across the board. So take any comparisons you make between your symptoms onsets, and my past and current symptoms onsets, with a grain of salt. I mean take it with a lot of grains. Antibodies have various presentations in symptoms.
Previous to getting these results I also suspected my neuropathy symptoms and autonomic dysfunction as having autoimmune causes, because they got worse and new symptoms (burning in feet legs arms hands) starting from when I got vaccinated, along with much worse pem, much more intense and oppressive weakness, muscle burning with use starting over the course of following weeks and turning into when just laying there, new pain, that only increased in the month and a half since then, until I had intervention. That is why I requested the sensory motor neuropathy panel and the celltrend sfn panel as two of the panels.
Ganglioside gm1 igg, possibly vgkc, and ts hds need investigation for the role they may be playing in my neuropathy symptoms, autonomic dysfunction, weakness, pem, and anything else.
What investigation has already been done so far for neuropathy is that a skin nerve biopsy didn't show a low enough fiber density to be considered as indicative of small fiber neuropathy. As it says on the report it does not rule it out (one reason being that nerve fibers could be decreasing over time in a way that's not explained by age, and happening because of small fiber neuropathy, but not low enough yet to be clearly indicating sfn with the established standards. It's not individualized. And you wouldn't know if you have no previous sample to compare it to. I learned this from anne louise oaklander the harvard researcher doing a lot for small fiber neuropathy). But there was another finding in the biopsy that could be causing autonomic dysfunction and it's not an autoimmune finding but research is saying the reason for this thing might be autoimmune too. I had no and almost no sweat response on a sweat response test. Now I need to investigate other types of neuropathies. Nerve studies and possibly a deeper nerve biopsy. Even if the skin nerve biopsy had low enough density to be considered small fiber neuropathy, I would've still investigated other types of neuropathies, especially because the ganglioside gm1 igg is associated with other types of neuropathy.
What investigation did you do that led to finding those antibodies?:
Autoimmune neurology panel from quest (vgkc), sensory motor neuropathy panel from quest (ganglioside gm1 igg), cunningham panel (anti tubulin and elevated cam kinase), celltrend (ts hds)
Type of treatment:
undecided. 3 weeks ago I did immunotherapy (ivig) as an interim measure because I was going downhill fast.
Helpful?:
Yes, very. At about 1 and a half weeks after, a normal response time, I began to recover my strength, oppressive painful weight more than I've ever felt lifted to a more tolerable and familar place, muscle burning with most use and when just laying there reduced to very little, still some non muscle burning in feet and legs comes and goes, ongoing pem from just small movements stopped and is now having fluctuations but at a much different threshold (that's why I think maybe there's antibodies involved in some of the presentation of my pem), oi is better, aching and new pain stopped. Not right away, over the course of a week and a half. I'm still much worse than before the vaccine but the difference from a week and a half ago is huge and I'm incredibly relieved.
I'm singing which was hard for me during that time. It was the most debilitated I've ever been, I've never come anywhere close to that before, one day 2 weeks ago it was difficult for me to hold my spoon, and I was planning on going to a facility to be taken care of because I don't have a caregiver yet and I'm in the middle of getting one. And I had no way to reduce pem from going to the bathroom and eating and on top of being in need and almost being unable at the rate I was going, I knew the more I got pem without help the more likely I was to get worse to the point where I had no choice. Thankfully cognitive capacity wasn't affected in all this. I am also having much more sleep impairment still.
I can feel today more feet and leg burning, and some muscle burning in arms and hands from use like holding my phone, and now I'm thinking that maybe they are the same pathology. I was thinking this before but it got so muscular when it was at it's worst that I thought maybe this is a different pathology. Now that they're starting back up together, I'm not sure. I had an involuntary muscle twitch today and those are associated with vgkc. I used to them get a long time ago randomly. I'm sure my little sleep is not helping. It's time for more immunotherapy. I did about .45g/kg 3 weeks ago instead of 1g/kg because of cost since it's not set up with insurance yet and I'm hoping to get reimbursed for that. So I need some more. That was an emergency measure to halt the progress. It will have to be decided whether I should wait the 3 more weeks to get a csf sample before doing my next infusions if approval can be gotten that soon or whether that's only blood you have to wait. And whether I should submit now or wait until I have more definitive neuropathy types so that the treatment gets started for multiple things at once in case that'll make it smoother to have it continuous for as long as I need it. Depends when I can see the specialists and if it'll be at least a month, I'll submit with what can be said now from the antibodies and clinical symptoms, while I investigate. And hope that it's a smooth process to "add things on" to what immunotherapy is for. Maybe it's better to see them when I'm worse although you don't know what kind of progressions you're gambling when you delay treatment. So I'll find out these things and get some advice and make some decisions.
I'm going through my process about insurance and timing and investigation, because these are important things for people to hear from others about what the process might look like and what kinds of things need to be tested in different situations beyond just the antibodies in the blood.
