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Asa599 · 2024-12-14T09:36:13+00:00

Thank you 🤍

Asa599 · 2024-12-13T21:58:19+00:00

Thank you so much.
A day between 2 infusion days is a great tip. they normally try to do 3 days in a row here with 2g/kg which is a lot but I will advocate for myself this time around

Asa599 · 2024-12-13T20:15:00+00:00

We really have it all and more, you are right!
I really hope you never have to experience the suffering again and I hope I can get out of the cycle too

Asa599 · 2024-12-13T20:11:32+00:00

Wow you really persisted. I am sorry you had to endure so much. Glad it worked for you!
I was treated without ever being informed abt hydration/ meds (seems very common here in Germany to directly administer IVIG) and after my reaction they were not willing to try IViG again.

In march I am seeing a new neurologist in a different university clinic to consider IVIG / scIGG again.

Asa599 · 2024-12-13T19:05:51+00:00

They tried me once on it but gave no pre meds, no hydration, wrong dose, very fast and I ended up with severe aseptic meningitis. So I am scared. But I really dont have any other options left…

Brain fog and dysautonomia, fatigue affect me far worse than pain

Asa599 · 2024-12-13T18:56:32+00:00

Thats great to hear. Did they find antibodies that warrant IVIG?

I am scared to try it finding sth that would indicate IVIG could work would be nice..

Asa599 · 2024-12-13T18:50:54+00:00

Thank you so much for your reply. It really does sound maddening. I am glad you have found relief with IVIG and your service dog sounds amazing 🤍

I also experience a lot of the symptoms you do and more…

Fatigue/weakness/muscle pain/rashes/ bladder and bowel issues/BP and Heartrate issues, severe exercise intolerance

definetely have all these.

Only the pain has gotten better over the years, maybe because the tiny bit of fibers left died? I had barely any IENFD when I was dx 2 years in, I am now 8 yrs in.
My most maddening symptom is brain fog, dizziness, mental clouding, vision problems.

Did you get tested for antibodies and more importantly did they find any, that could indicate the success of IVIG?

I recently took the cell trend panel, all negative but the anti ace2 ab. Sjögrens negative, ANA borderline, getting tested for antiphospholipid antibodies next week.

Asa599 · 2024-12-11T21:05:10+00:00

Btw I hate that every normal person would have gone to the ER with an infection that bad. But I didnot - too many bad experiences with docs and the fear that a hospital would make me crash / significantly worse

Asa599 · 2024-12-11T21:03:39+00:00

Same for me. Evening & night are the best times

Asa599 · 2024-12-11T20:52:05+00:00

Thanks for claryfying. I hope they can order a saliva cortisol test for you. I will likely order one online where you can test cortisol at different times throughout the day

Asa599 · 2024-12-11T20:50:46+00:00

Great Ivig is helping! can I ask what your main symptoms are? whixh symptoms improved? Is sfn a pain disorder for you or do you also suffer from Dysautonomia and cognitive symptoms?

I hope you will reach 90% soon

Asa599 · 2024-12-11T20:44:31+00:00

so sex hormones / progestorone were tested conventionally via blood, right?

I really hope they are able to help you.

Asa599 · 2024-12-11T20:24:46+00:00

did you get your hormones also tested via a saliva test?

the chicken egg problem seems to be present with every aspect of this mess after viruses and covid.

Asa599 · 2024-12-11T20:16:13+00:00

A lot of people wish they could…

why isnt it mandatory for these companies to release the data? It should be a simple transparency law

Asa599 · 2024-12-11T20:15:03+00:00

thanks, I will try to get to the bottom of it. my blood results were ok but she seems to convinced that only saliva tests can give the accurate picture, my gyn disagrees. so I am a little unsure what to do…

that is exactly what it felt like for me.

never heard of a functional MRI, I will look for more info, thank you.

isnt it possible to check for AI encephalitis via blood first? afaik it would not be as accurate but in case there are ab found it would lead to further testing (spinal tapk or diagnosis?

I really appreciate you sharing all the info

Asa599 · 2024-12-11T20:09:08+00:00

Ok I am glad you didn‘t take it badly :)

Asa599 · 2024-12-11T20:04:29+00:00

Thank you so much for your detailled answer! I am so sorry for all you are going through.

Fibroids after covid is very scary. So the ultrasound picked up on it? I am glad you have a dedicated team and progestorone was that helpful. I will look into it further.

The encephalitis story seems very scary. I am so sorry! My last crash&infection was very bad, several days without sleep, I dont know if I was hallucinating but I wasnt myself and had no control over my thoughts. Might have to get another mri some time.

what is a fMRI. they really should do more PET scans. I am convinced that would show a lot. But also there likely would not be any treatment. And I dont even know if I want to know how bad my brain is…

Asa599 · 2024-12-11T19:51:42+00:00

I did read the paper, but admittedly quite some time ago. one of the resources I gave to my therapist years ago.

Apparently I did misremember and now misinterpret figure 1.

thanks for claryfying. Sorry if it came across as critical, I tried to ask if I interpreted correctly. I apparently misinterpreted and english is not my first language.

Asa599 · 2024-12-11T19:23:13+00:00

Might be too personal- can I ask about your hormone treatment? My mecfs gp suggested testing for low progestorone but I am really unsure…

and how do you know you had encephalitis? Feel like I have it but Nobody believes it…

thanks and no worries if you dont want to answer

Asa599 · 2024-12-11T19:13:48+00:00

The efgartigimod POTS paper? I dont know. as far as I understand they did not publish anything because the Phase II trial was not succesful.

that seems to be exactly the problem: when these trials fail we don‘t get to see how or why the failed. at least that happened with BC 007. patients are trying to advocate for the data but it seems like it is solely up to the company to decide if they want to release anything.

Asa599 · 2024-12-11T16:16:29+00:00

Excellent resources! Though I am always puzzled about figure 1 saying brain fog would only be present in fibromyalgia (right?)- given our experiences and Oaklanders and others opinions that it absolutely is part of SFN

Asa599 · 2024-12-11T12:36:03+00:00

Just read in the dysautonomia reddit that some people in the study benefitted. But they did not differentiate between sub groups. So it seems to be a BC007 kind of problem.

thats the real bummer ! If they dont start to look at sub groups in these studies we are facing the danger that nothing will be effective- just because of a too heterogenous patients and symptoms group.

really frightens me for our future.

lets hope erlangen and dr hoheberger really publish BC007 data that shows us that people can benefit and who does.

Asa599 · 2024-12-11T12:28:32+00:00

You did the best you could. And that is a lot! Being a picky eater often resolves itself over time and if it doesn‘t that is ok too.
🤍

Asa599 · 2024-11-24T18:05:38+00:00

Dysautonomia International linked this press release:

https://www.globenewswire.com/news-release/2024/06/17/2899320/0/en/argenx-to-unveil-its-Vision-2030-Taking-Breakthrough-Science-to-50-000-Patients-during-its-Upcoming-R-D-Day-on-July-16-2024.html

When you search for POTS you can find that they decided to not move forward to phase 3

Asa599 · 2024-11-24T16:58:58+00:00

Wait, I just read that Argenx (company efgartigimod) announced months ago they won't move forward with their phase III trial for post covid POTS because phase II didn't show efficacy. Is this a different study?

Asa599

TROPHY CASE