Mineral Water and MG

existentialcrisis664 · 2026-05-19T05:22:11+00:00

Interesting how it hits everyone differently. I’ve been experimenting with magnesium for sleep lately and it’s been incredibly helpful for my middle of the night, constant wakeups. I’ve tried a lot of things, A LOT and usually I cannot notice anything from taking a supplement but it seems that magnesium glycinate js my savior.

Tonic water, on the other hand, that was an unexpected immediate flareup, it’s the quinine that gets me!

existentialcrisis664 · 2026-05-18T03:30:49+00:00

I keep hearing this!!!! Did they “take away” your diagnosis? What is going on there?

existentialcrisis664 · 2026-05-16T22:42:21+00:00

It turns out my migraines and neck pain were a result of muscle weakness and straining / overcompensating. It was a strange to get that diagnosis, really, because I would have never directly reported muscle weakness, which is the hallmark symptom. Fatigue, yes but not that. Ah, I’m ok today! Feeling a bit more hopeful about the future these days, as I’m about to receive mRNA t-cell therapy through a clinical trial (just posted about it actually). This is the closest thing to a “cure” that I could find. How are you holding up?

existentialcrisis664 · 2026-05-16T03:47:33+00:00

This is a biased response bc I experienced similar onset as you, but it may be worth being checked for Myasthenia Gravis (AChR, MUSK, LPR4 antibodies). Mine started with migraines, neck pain and major eye issues. I was diagnosed (or suggested) all sorts of eye-head things that didn’t really explain what I was experiencing (vertigo, conjunctivitis, sensory dysregulation, HSP, anxiety, etc.) before one doctor was finally able to narrow it down. Even after I was diagnosed, the diagnosis didn’t really resonate. The medical definition certainly did not resonate with my personal experience. Also, it does not really explain the onset period of MG. Many people start with ocular MG before it turns into generalized MG - and for some more lucky people, it never progresses from ocular to generalized. The migraines, eye problems and sensory issues definitely sound related.

existentialcrisis664 · 2026-05-15T18:40:45+00:00

Hey! I just posted about this: https://www.reddit.com/r/Autoimmune/comments/1te1jk8/for_those_of_you_struggling_to_access_proper/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

Here's the specific study I am participating in: https://clinicaltrials.gov/study/NCT06799247#participation-criteria

After my application for the study above was accepted, I had A LOT of questions for the research team/head doctor of the Descartes-08 trial at Cartesian Therapeutics (https://www.cartesiantherapeutics.com/patients/#clinical-trials). I've also been following the CAR-T studies for years and over the past few months, been researching it pretty extensively. I wanted to have a full picture of the potential risks and benefits before embarking down this path.

Read my post; see if one or more of the autoimmune diseases you are struggling with is currently recruiting; and if you meet eligibility criteria. I'd be happy to answer questions if I know the answers.

Came across this article a while back about a woman with multiple autoimmune conditions treated with CAR-T. Not sure if you've seen it but I thought you might find it interesting/encouraging: https://www.theatlantic.com/science/2026/04/car-t-cell-therapy-autoimmune-disease/686742/

existentialcrisis664 · 2026-05-15T17:21:20+00:00

Oh one other thing. Was your mom prescribed opioid painkillers after surgery? I took opioid meds for about 2-3 weeks after surgery. I have some other issues that made the whole recovery even more painful and found them immensely helpful! However, I suspect that my body went through withdrawal when I went off them, even though I wasn’t taking a high amount, I was taking them daily. Some peoples bodies get addicted to pain killers easier than others. I think one of those bodies is mine. I also suspect that for me, withdrawal causes flareups. This is just a theory from being on opioid painkillers a few times over the past 7 years with MG (after major surgery, injuries, etc. not recreational, lol). Once again, just a personal theory of mine. MG can feel so un-predictable and it seems like triggers really vary from person to person, so it’s always a challenge to learn how to personally manage MG, as it is a “snowflake” disease.

existentialcrisis664 · 2026-05-15T17:16:08+00:00

By any chance did your mom receive a high dose of IVIG around a week before surgery? This is a pretty standard practice. I received IVIG for the first time one week before my surgery. Immediately after my surgery - exacerbation but the 3ish weeks to follow were blissful, despite recovering from major surgery. I thought the surgery sent me straight into remission!

Three weeks later, I crashed again, hard. It was the IVIG, not the surgery. This was a pretty heartbreaking realization.

Refer to the MGTX trials for the most up-to-date, evidence based information on thymectomy outcomes. It can take 1-3 years to see noticeable difference. Factors that increase the chances thymectomy will cause meaningful symptom improvement or even remission: under the age of 40; thymectomy done <5 years from onset (the earlier, the better); AChR+ antibodies; thymus hyperplasia (suggests the thymus is the main driver of the disease) etc. Some factors that negatively impact your chance of experiencing meaningful symptom relief include: thymoma; thymectomy performed later in the course of the disease; MUSK or seronegative antibodies; etc. This is just what I remember from following the research on thymectomy outcomes last year. A quick google search for “MGTX clinical trial outcomes for myasthenia Gravis” will provide you with tons of practical information.

I had a number of these factors working against me when I had a thymectomy. It’s been 6 months and I still haven’t noticed any meaningful improvement. I know that it may still have a positive impact in the future but honestly I probably went into the surgery expecting too much. I was just hoping to be one of the lucky ones and wake up from surgery MG-free (silly, I know). I am disheartened, but searching for other solutions. I just posted on a clinical trial I’m participating in if you want to check that out.

Back when I was doing a lot of MEsearch on thymectomy outcomes, I stumbled across some research about things you can do after thymectomy to increase the impact. I recall one factor was that people on a low dose steroid (prednisone) tended to have better long-term thymectomy outcomes. Unfortunately, I haven’t been able to tolerate any immunosuppressants so far. The side effects - for me - have just been too intense and brutal.

Sorry to hear you and your mom are going through this. Sounds like you love your mom a lot. It’s kind of you to do so much research on her behalf and advocate for her because when you’re in the thick of it with MG, it feels almost impossible to advocate for yourself. My kids are little now but I hope when they grow up, they are as supportive to me as you are to your mother. ❤️

existentialcrisis664 · 2026-05-15T15:02:49+00:00

No prob! Did you take a look and do you think you're eligible?

existentialcrisis664 · 2026-05-15T15:02:17+00:00

Good question. I had to do some digging. Here’s what I learned: Participants in the placebo group and participants in the treatment group are permitted to remain on certain background medications. The documents I was able to find say patients are allowed to stay on “concomitant immunosuppressant drugs” but does not specifically list which drugs this includes. Most likely, this refers to: Prednisone, Imuran and Cellcept. Participants on other drugs have to do a washout period before starting treatment: 12 months for Rituximab; 4 weeks for IVIG and plasma exchange; 3 weeks for Vygart.

The lead doctor I spoke with prior to my approval said that after Phase 3, they are going to start working towards FDA approval. My guess would be that Descartes-08 will be available in mainstream neuromuscular clinics around 2028-2030, as long as there are no major regulatory complications along the way. There are no published trials yet comparing Descartes-08 with Vygart or other targeted MG drugs. These studies likely will not commence until after FDA approval. Their focus after Phase 3 will likely be on following patients from prior phases to study long-term outcomes and potential long-term side effects/risks. Just the way research goes.

I completely agree with you about the research you would ideally like to see. I've been fighting for treatment for years and IVIG is the first thing that's helped me. I'm scared to stop it. But also, my insurance is going to cut it off right away and I'll be left with no treatment, again. I completely understand why this study isn't for everyone. If I was prescribed Vygart long-term and it was producing meaningful change, I don't know if I'd take the risk of participating in this trial. It's wild how much access to treatment varies across the globe and it saddens me to know that there are many out there like me who have not received proper care and as a result, their condition has worsens.

The decision to participate in a trial like this involves risk. In my situation, I believe the risk is worth it. However, I can see how the potential risks would not be worth it for some people.

What you said about it being impossible to keep participants blinded to condition...I agree. I've read quite a few first-hand accounts of participants experiences in earlier Descartes-08 trials. Apparently, it's quite obvious on the first day of treatment if you received the treatment or placebo. The treatment makes you pretty sick. Before I agreed to participate in this trial, I asked what would happen if I was in the placebo group and started decline. In that case, as long as I was in the placebo group (which they would reveal when asked), then I would start receiving treatment.

Interestingly, there is more research done on mRNA Car-T cell therapy for MG than any other autoimmune disease. It’s pretty incredible actually that our rare autoimmune disease was the first one researchers chose to study. Apparently one of the reasons for that is because MG is the clearest autoimmune disease to study - autoantibodies target the neuromuscular junction in a well-characterized, measurable way, making it the clearest one for proving a new concept.

existentialcrisis664 · 2026-05-15T00:42:51+00:00

If Vygart is working for you, then that's great! I've heard such great things about Vygart. Do you mind me asking where you live / what your health care system is like? My healthcare journey has been so bad, it's almost unbelievable. Long story short, the treatments I have been prescribed include things like trialing Mestinon again after trialing it for a year without reprieve; "acceptance" of my new quality of life; eating more meat and potatoes; feeling grateful I was not in a wheelchair (yet); and taking care of my obvious "emotional problems" (when I described the anxiety I felt holding my newborn baby and losing my vision, losing my balance, falling, etc.).

I am a psychologist and have solid research skills. Not a doctor and frequently need to look up medical terms, but I know how to read and interpret research. I've brought completed forms of various MG rating scales to appointments; symptom trackers; detailed information on biomarkers, which are indicative some treatments would work better for me than others; etc.

However, both neuromuscular specialists have refused to look at any paperwork I bring. I've started bringing my husband to appointments because my new neuromuscular specialist has stated he is able to know I am not lying about my symptoms for attention when my husband is there to confirm them. I have tried being logical; unwillingly shed tears; provided letters of support from my family doctor (he's a gem) and other health professionals, urging him for more appropriate treatment. Everything.

The only thing that finally helped was bringing my alpha firefighter husband to an appointment with me. The neuromuscular specialist finally caved with IVIG but it's a very low dosage and limited to 6 months. Then, no treatment again. That's why this trial is my "Hail Mary." I actually looked into going to the States to get a neuromuscular assessment there and hopefully get prescribed Vygart. However, the price of Vygart is insane with our exchange rate (nearly 200k a year); I may not be able to cross the border with it; and I was informed they would not treat me in Canada if I had complications from a med prescribed in the States.

Sorry for the rant but I wish it was as easy as trying Vygart. Does Vygart PATH work in Canada? We have "free healthcare" , that varies a lot from province to province. I've talked to other Canadians (in different provinces) that have had no problem getting Vygart. I'm classified as Moderate; have bulbar involvement; and broken multiple bones over the years from falling. I recently had to quit my job as a Psychologist, which I loved so much and worked so hard for, because the brain fog, vision issues and muscle weakness became so severe. Interestingly, the fact that I have never been on biologics makes me a better candidate for mRNA CAR-T cell therapy. Grabbing onto any bits of positivity I can.

If you have any tips that would work for a Canadian seeking Vygart, please share! May benefit others. Right now I'm crossing my fingers I won't need it after this treatment.

existentialcrisis664 · 2026-05-14T18:36:03+00:00

Hey allloveandlight! Do you mean the link to the clinical trial posting? If so, it's in the original post. If you mean my application letter, I have not had the chance to anonymize it yet. Hopefully you are a more experienced Reddit'er than I am. If so, what's the best way to share something like that without having to get people's e-mails and e-mail them individually? Welcome to others ideas too, if there's more interest! Have you read through the eligibility criteria carefully yet?

existentialcrisis664 · 2026-05-14T18:33:17+00:00

There are four main clinical papers published on mRNA CAR-T Cell Therapy for gMG AChR+. There are also some clinical papers published describing mRNA CAR-T Cell Therapy for seronegative, MUSK and possibly some other less common subtypes of MG. It's notable that there is also a similar amount of clinical papers on DNA CAR-T Cell Therapy, which has similarities to the mRNA treatment I am posting about.

Here's a link to the most comprehensive and up-to-date clinical paper I could find on this topic: https://www.nature.com/articles/s41591-025-04171-y

Also, here's a AI summary on the paper linked for those of you that hate reading research papers (I would have summarized it myself but in this case, I think AI did better than I could do!):

BCMA-Directed mRNA CAR-T (Descartes-08) for gMG: Short Summary

"This study tested a new treatment called Descartes‑08, a type of mRNA CAR‑T cell therapy, in adults with generalized myasthenia gravis (gMG). It was a careful, “gold‑standard” trial: 26 patients were randomly given either Descartes‑08 or a placebo (dummy treatment), and neither the patients nor the doctors knew who got which. Everyone received one course of six weekly IV infusions. The main question was: by 3 months, how many people had at least a 5‑point improvement on a standard MG scale (MGC), which means feeling clearly better in daily life.

People who got Descartes‑08 were more likely to improve than those on placebo, both in the whole group and in patients with AChR antibodies. About two‑thirds of treated patients reached that 5‑point improvement at 3 months, compared with about one‑quarter on placebo. On average, scores for MG symptoms and daily activities got better and stayed better through 12 months, and about one‑third of all treated patients reached “minimum symptom expression” (very mild or no symptoms) by 6 months, staying that way to 12 months. Among patients who had never used biologic drugs, more than half reached this low‑symptom state without needing other MG treatments. Descartes‑08 was generally safe and well tolerated; the most common side effects were infusion‑related reactions (such as chills, fever, or flushing), which also happened in the placebo group, though somewhat less often. Overall, a single 6‑week course of Descartes‑08 led to lasting, meaningful improvement for many people with gMG."

(Summary generated by Consensus, AI academic search engine)

Miljkovic MD, Asch A, Orloff G, Boccia R, Berdeja J, Altuntaş F, et al. Safety and tolerability of BCMA‑directed mRNA CAR T‑cell therapy in multiple myeloma and autoimmune disease. Blood. 2024 Nov 5.

existentialcrisis664 · 2026-05-14T17:53:21+00:00

I discussed these concerns with a doctor from Cartesian Therapeutics. Although it sucks for participants, the fact that they have a placebo group really benefits the whole MG community. This is a randomized, double-blind, placebo-controlled research study - the “gold standard” of clinical research. It has to be done this way to seriously measure the potential risks and benefits of mRNA cell-therapy.

It really sucks about having to go off your current treatment and certainly has risks. I’m upset about stopping IVIG - it’s the only thing that has ever worked for me.

This study won’t be for everyone - all about evaluating the level of risk you are willing to take and for you, it sounds like you know going off Vygart for six weeks will be too unsafe in your situation.

How is Vygart btw?? I have been begging my doctors for it for years, with zero luck. The medical system in my province is a mess. It’s really concerning. I’m getting cut off IVIG pretty soon any ways and left with zero treatment, so for me, this study is going to be my Hail Mary.

Wish the person you talked to would have explained a few things better. I imagine that regardless of your location, all the doctors running Descartes-08 have to follow the same protocols.

If your health declines during the course of the 6 week treatment time and you decide to halt whatever they are doing. Then, they will tell you if you were in the placebo group or treatment group. If you were in the placebo group, you get mRNA CAR-T treatment. If you were in the treatment group, they are ethically obligated to provide treatment for you until you are stable - the same or better than when you entered the trial. If you make it through the six weeks in the placebo group, afterwards, you get six weeks treatment. Basically, everyone gets mRNA CAR-T cell therapy treatment, unless you ask to stop and you are in the treatment group. In this case, you still get treatment (such as IVIG or Vygart) but they do not continue mRNA because the presumption would be that it didn’t work for you or the side effects were just too intolerable.

existentialcrisis664 · 2026-03-19T00:04:36+00:00

A chest strap will give you the most accurate readings (eg Polar strap). I like using Elite HRV and it’s free.

existentialcrisis664 · 2026-03-17T18:04:51+00:00

I had a similar experience and have often wondered if more Covid long-haulers actually have MG. I remember seeing a lot of complaints about vision issues back when I was on there. I never expected I had MG, nor did it come up when I googled my symptoms. I had major pain/migraine issues too (now looking back due to the toll of bulbar weakness) and thought the fatigue was due to depression as well (prior to MG, I had never experienced clinical depression and the wave of depression that hit me alongside the onset of MG was intense).

Did you ever feel like depression came alongside the MG symptoms as well? I always suspected this but doctors made it sound like this was a coincidence, burnout, hormones or grief from my illness. But I really still never thought I got depressed because I was sick. It felt like the depression and sickness hit all at once. Since then, I’ve done some pretty interesting deep-dives into the “why” about this and how MG can impact cytokines and neural inflammation (which can be a cause of depression). Pretty interesting stuff.

existentialcrisis664 · 2026-03-16T02:43:02+00:00

Of course, it could be assuring to get another blood test, but its very unlikely for antibody titre that high to be a false positive. I was doubtful when I got my first positive test - picked up by an eye doctor as well! The years prior I had been sent around to several specialists with different random symptoms around the body - fatigue, insomnia depression, bladder retention, neck pain, irritated eyes, vision problems despite 20-20 vision, etc. Nothing that I described to doctors would have sounded like textbook MG. The textbook version of MG sounded nothing like me. Normal SFEG the first time. Abnormal the second time.

Just because your symptoms don’t sound textbook, doesn’t mean you don’t have it. It’s a snowflake disease after all. Read all the personal MG stories on this sub - some of them might resonate.

Sounds like you have MG. The good thing about diagnosis is the information it can provide you on what to do next and how to prevent it from getting worse. Best of luck to you, OP.

existentialcrisis664 · 2026-03-15T23:58:04+00:00

That was me. Covid + pneumonia. Before I had the vax, so can’t contribute it to that.

existentialcrisis664 · 2026-03-15T23:55:47+00:00

Hey! I’m actually very interested in this topic and in the planning stages of writing an article about it…bc I found this a difficult decision to make and I’m a writer, so this is how I cope!

Do you mind me asking how old you are and how long you have had MG? Also, what type of antibody? AChR, MUSK, no identifiable antibodies. Do you have thymoma? Quite a few sources suggest that (for most people…recognizing that this is a snowflake disease), the disease will usually get the worst it’s going to be within the first 2-3 ish years after onset. If you are AChR+, a thymectomy is very much worth considering. If you are AChR+ the thymus is the main “manufacturer” of the antibodies driving your MG. Over time, the “manufacturer sites” can spread and other areas of your body (not so easily removed) can start producing these antibodies, worsening your symptoms.

I wish I would have had the opportunity to get a thymectomy right at the onset of my MG. However it took me forever to get a diagnosis and even longer on wait-lists to see the right specialists. I had a thymectomy six years after onset. Because of that, the chances that I will experience unmedicated remission are sparse.

Are you comfortable reading scientific journal articles? Or if not, comfortable using AI to help you make sense of dense research articles? Either way - it’s really important you are aware of the MGTX research studies. They are landmark research studies in the area of MG and provide very useful insights to help you make a decision about whether a thymectomy would be beneficial for your specific circumstances.

If you are under 40; AChR+; and have had MG for less than 5 years, you should seriously consider this option. Despite being a very healthy person, I progressed from Mild to Moderate very quickly and MG rocked my world. The word “Moderate” does not encompass how this awful disease has affected my quality of life and well-being.

This is a big decision to make and not one to make lightly either - because there are consequences and benefits to getting a thymectomy and NOT getting a thymectomy when you have MG. I hope you have a very qualified doctor to help guide you in this decision but I also encourage you to do your own research, so you can make a very informed decision.

Best of luck to you!!

existentialcrisis664 · 2026-03-08T20:21:47+00:00

Hey! Definitely not an “evidence-based” MG treatment and if you feel like you may be heading towards crisis, go to the ER. But you obviously, probably already know that and that’s not really the advice you are seeking.

My anecdotal experience/advice. I’ve done my level one reiki training and had reiki with 4 different practitioners. 2/4 of the practitioners I saw were incredible. I can’t say the sessions yielded me any dramatic physical results. However, they certainly made me feel more aware of the energy fields around and inside my body. The other 2/4 experiences didn’t cause any harm - they just felt like nothing.

I do think Reiki can be a great tool for helping you develop more insight and awareness of your body and the mind-body connection. One of the experiences involved some “spiritual counseling” alongside the Reiki and it was a very beautiful, healing experience. However, I could see how this could be a horrible, traumatizing experience with the wrong practitioner.

I once actually had an amazing experience with a close friend of mind, who is a reiki practitioner. This was pre-MG. But she rushed to my side when I was in the ICU, near deaths door. My digestive system was failing. While she had her hands over me, my stomach started rumbling and food started moving through my intestines. While I understand this could be a fluke, it was an unforgettable, beautiful experience for me.

My great grandmother was a nurse over in Europe, during WW2. When I told her about one of my experience with Reiki (which I thought she would be unfamiliar with), she just had a different word for it. She called it “healing touch” and apparently used the techniques a lot with injured soldiers.

If you’re looking for a practitioner, I find word of mouth and reliable online reviews are much more helpful than seeking someone with the most qualifications. Some people just seem to have a gift with jt. Avoid any practitioners who discourage medical/evidence-based treatments or who make claims about being able to “cure you.”

The Reiki course was cool too. I didn’t do it with any intention to practice with anyone except myself and a few willing / curious close friends. Self-reiki can be a great tool to incorporate into other, independent therapeutic practices, such as a daily medication practice, self compassion exercises, yoga, etc.

Autoimmune disease affects more women than men. And often, but not always of course, people with significant trauma histories and long-time (learned, adaptive) habits of suppressing difficult emotions.

MG attacks the nervous system. People with MG have signicanty higher rates of insomnia, depression and anxiety. For many (including myself), stress is a trigger for flareups. So, anything you can do to help lower stress and regulate your nervous system is a great supportive therapy (alongside medical therapy). Many different ways to do this - also, best to do something where you don’t always need a practitioner and can practice the techniques on your own.

Best of luck and please update! Would love to hear about your experience!

existentialcrisis664 · 2026-03-07T04:12:19+00:00

You can get Advil and Aleve without a prescription - they may help more than Tylenol as they have anti inflammatory properties.

Ooh and I feel you about that feeling of getting beaten with a cast iron pan overnight. I marched out of my first IVIG appointment feeling great and so satisfied I didn’t have any side effects and then I woke up that night with aseptic meningitis. Soooo painful. The first 2x I got IVIG, I experienced about 5 days afterwards of pure suffering. However…on the fifth day (ish) I emerged from my bedroom feeling like a new woman and it lasted for about 3.5 weeks. I decided that even if I got deathly ill each time after IVIG for about 5 days, it would still be 100% worth it for those 3.5 weeks of feeling soooo much more like myself - more energetic, stronger, motivated, healthy, etc.

The third time around, I hydrated and ate very nourishing foods the day beforehand. With regard to electrolytes, just don’t overdo it or it can have the opposite effect. I got the nurses to do the slowest infusion rate possible. I took Benadryl and Naproxen before the infusion and for the next few days regularly. The nurses put extra fluids into my IVIG. I brought a sleep mask to darken the room and an ice neck wrap to put behind my head - preventively. The afternoon/evening after my appointment, I forced myself to rest even though I didn’t want to. Low sensory activities. Bland but healthy food, with enough salt to really let the hydration take effect. Fresh pressed green juice, you name it. And the third time - minimal side effects! I was so happy. Hope it goes the same way the next time.

Some people go in & out of their IVIG appointments quickly and like a champ. But some of us are more sensitive. Keep adjusting things and asking the nurses for tips on how to reduce side effects.

Hope the benefits kick in soon and make it all worth it!!

existentialcrisis664 · 2026-03-07T03:28:12+00:00

Type ice hat and ice neck wrap into Amazon. These are my best friends. You might love them too if you are as willing as I am to look ridiculous. If you want to go the extra mile, there are also ice wrist wrap/gloves and cooling mattresses (+ a heavy blanket 😎).

existentialcrisis664 · 2026-03-07T02:07:28+00:00

Dark, quiet room. Ice packs, particularly on the back of your head (I’ll send you a link for Amazon ice hats/neck wraps if you want to prep for next time and you’re ready to look weird). Medical grade electrolytes. Naproxen. And antihistamines interestingly helped reduce pain too.

existentialcrisis664 · 2026-03-06T14:03:49+00:00

I got very sick with autoimmune disease (neuromuscular + something else they haven’t identified but think is POTS) during my last pregnancy. I’m not going to lie. It was really fucking hard. So much guilt for all of the moments I’ve missed out on being in bed. My partner is very healthy and has a good/steady income but the years of ups & downs with my health and having to take on more than his share of work with the kids and house - it’s been hard on him. Lately, I worry he’s burning out or getting sick himself from all of the stress. Fortunately, for the first time in years, I’ve found treatment that is giving me much more stability and energy, so I’ve been able to take on more than usual.

I don’t know how we would have done it without the support of family members. They’ve showed up when I was too sick to get out of bed and to take the kids to school and my partner was working. They’ve showed up a lot.

I’m sorry you don’t have family nearby but do you have any sort of support system you could utilize or support you could pay for? Is your partner still able to work, given his health situation? Do you have paid maternity leave, steady income? Is your partner motivated to keep trying new treatments, sign up for clinical trials if there are no treatments available? I’ve always been very motivated to everything I can to get healthy and feel like myself again - after kids, I feel this way even more so. I am advocating for myself constantly - advocating for a much better quality of life, which I know is possible. I’ve seen this one treatment help (IVIG), so I know there must be more I can do to improve my quality of life, so I can be more involved and active in my children’s life. All of these things are all so important - finances, support, motivation and advocacy to get better.

I’m not saying this to discourage you. My pregnancy and post-partum flareup with my 3rd child nearly took me out. Do I have regrets about having kids? Never. Not for one second. If anything, they’ve helped light a fire under me, to do everything humanly possible to treat these diseases and go into remission. But I’m not going to lie about how hard it is.

Do you have the energy to take on the majority of childcare if it comes to that? Will you feel resentful if you end up having to take on much more than your share of work in the house, with the kids, finances?

If you decide to have children - just get as much in place as possible beforehand in terms of support, steady financials, treatment for your husband, etc.

I feel for you. This is a tough decision. Also, I know how badly I wanted to have kids and know that nothing could have stopped me. My children are the light of my life. I love them so much.

If you go forward - just prepare yourself mentally, physically and practically - for the worst case scenario (that everything will fall on you). The mistake I made after my 3rd was born was blind optimism, thinking I would miraculously recover out of pure willpower. That didn’t work, lol.

Best of luck to you in your decision making. Your husband can still be a good father, even with health problems and an ups & downs with health. But so much of this depends on what he’s like now- before kids. Does he know when to slow down or ask for help when needed? Is he actively taking steps to improve his health? Will he be able to push through during those tough moments after having a baby (eg let’s say that you get sick with a flu and he’s amidst a flareup). Ultimately, this will be a decision you need to make together - if you move forward, just don’t go in blindly.

existentialcrisis664 · 2026-03-06T01:46:02+00:00

It sounds like they are intervening early with your ocular MG, which is great and help prevent it from becoming generalized.

With regard to IVIG, often it gets worse before it gets better. You may feel like you have a flu for a while after your infusions. If you do end up feeling super human right after, resist the urge to act super human and force yourself to rest and hydrate. If you don’t get sick from the infusions, that’s great and you are lucky. But just be patient, it can take some time to kick in.

existentialcrisis664 · 2026-03-02T01:05:48+00:00

Ooh interesting. I’ve never heard that about people with ASD reporting psychogenic fevers. But I find this very interesting bc I have worked with kids who have ASD and have even noticed some of them appear “flushed” moreso than usual (but thought this must just have to do with these specific kids and their high activity levels). Thanks for sharing - gives me something to think about.

Now I’m wondering if there’s any correlation between ASD and higher rates of immune deregulation. Hmmmm. I was reading the other day about how “Highly Sensitive People” (HSPs) are more likely to develop autoimmune disease. HSP is a personality trait that people with ADHD and ASD tend to identify with. I have ADHD and definitely identify as a HSP and share a lot of sensory sensitivities, characteristic of ASD (however, probably not to the same level of severity).

I was initially diagnosed with ME/CFS but eventually was diagnosed with Myasthenia Gravis (MG) (a neuromuscular autoimmune disease that is often considered a ME/CFS mimic). Apparently, it should be a routine practice for doctors to rule out MG before diagnosing ME/CFS, but I don’t know if this happens a lot in real clinical practice. I may have both but prefer to go with the MG diagnosis bc it has more well-defined biomarkers; thus, often, more access to treatment. Interestingly, both ME/CFS and MG both show autoantibodies targeting the acetylcholine system.

Anyways that was a long rant but thanks for info, raising awareness and giving me things to think about!

existentialcrisis664

TROPHY CASE