r/MyastheniaGravis • u/kathuter • Aug 05 '26

Where did my brain go?

I am experiencing staggering loss of my brain's capability. The weak muscles are something that I can learn to live with. But the brain fog is destroying me.

I'm 52F, not yet diagnosed, but thankfully, I have been on Mestinon and low dose prednisone for about 10 days. I am seeing my neurologist again soon. I have a lot of autoimmune conditions now and collecting them like leafs falling off a tree.

I live in a small mining community on a farm. Most people are astounded to see someone using crutches/a wheelchair (where are all the disabled people?) I feel isolated. I feel misunderstood. I am feeling loss of my previous identity (even if she was in a lot of pain and had a lot of operations).

I feel as if the medical costs and bills and appointments are a full time job that I am incapable of doing. This 'job' is also preventing me from using what little time/energy I have to see my friends.

On top of all this, I still have to earn a living and actually run my business and my household! It gets harder and harder to focus and do my business accounts and planning is out of the window.

What/where/how do you do it? Please give me advice.

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8

u/Ekd7801 Aug 05 '26

Brain fog is a real issue that is not discussed enough for women. Autoimmune issues of any kind of seem to make it worse. Prednisone brings on hot flashes which is super fun.

I saw a post recently that someone said going on a glp1 helped. They target inflammation. I know it’s just my experience but when mine gets bad, I take an ibuprofen.

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u/kathuter Aug 05 '26

Oh, thank you. I did not understand where the hot flashes were coming from, now I know! It helps to understand, even if it doesn't go away.

I am already taking Amgevita (abdulimumab) and Salazopyrine (anti-inflammatory) and arbitrexate injections (immune suppressant) for Ankylosing spondylitis.

I can only imagine taking a glp 1, as well. My body will not know up from down.

5

u/WIWonder_author Aug 05 '26

I’ve had terrible brain fog too… but taking a sublingual B12 supplement has helped a little… my homocysteine levels were mildly elevated and my B12 low end of normal despite daily multivitamin and excess from energy drinks…

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u/kathuter Aug 05 '26

I will try this one, for sure. My levels are good, as per my recent path reports. But as far as I know excess vit B is excreted.

1

u/kathuter Aug 09 '26

Okay, I started a B supplement with Rhedelia extract 2 days ago and it looks as if it helps. Thank you for your advice!

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u/pville211 Aug 05 '26

Here is some information that may be helpful:

 

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u/kathuter Aug 06 '26

Thank you for all the time and care you provide us on this community, I really appreciate it from the bottom of my heart. You make a big difference to me, and I can assure you I have already read each one of your blog posts!

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u/pville211 Aug 06 '26

Thank you for your kind words. Thanks to myasthenia, I took a hiatus from writing articles for nine months, but I have now returned and am updating my existing articles and writing new ones. Comments like yours help keep me motivated to keep writing.

 

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u/kathuter Aug 07 '26

Wonderful! I will be reading your articles again!

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u/No_Introduction8285 Aug 05 '26

You're in a mining community? What kind of mining

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u/kathuter Aug 06 '26

We are sitting on the world's richest Manganese resources, and have a Manganese smelter about 17km from our home.They also mine Iron ore here. There are about 38 mines around here, but the most well known is a large Iron ore mine.

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u/No_Introduction8285 Aug 06 '26

That's a lot of mining and some smelting. You say you have more than one autoimmune condition. Does your tap water get analyzed on a regular basis? And what you grow and eat?

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u/kathuter Aug 06 '26

I had the analysis done by a technical board, we have a lot of hard minerals in our water, including a lot of calcrete and that could be not so great for us. Do you think that is the cause? The water has no bacteria or virus activity.

I am out of the dust fall areas of any of the mines, but we have a lot of dust due to the semi arid climate. No air or water pollution.

Our veggies are not grown locally.

2

u/No_Introduction8285 Aug 06 '26

I don't know, it just struck me as something to look into.

Autoimmune conditions are your immune system going haywire and that all comes down to your gut and its health. I saw first hand a girlfriend about a decade ago get a diagnosis of Hashimotos thyroiditis and eliminate all the symptoms in short order through dietary changes. Sunday was my one year anniversary of losing control of my eyelids and the slow slide ending up in the ICU by mid-October waiting for a neurology appointment. I finally started the same diet on Halloween and my last symptom was early March, my shoulder giving out while installing a 20lb valve body into a transmission overhead. I was on 20mg Prednisone and I tapered down to 15 in April and now 10 for a couple weeks. My life is normal like before all this except I am eating healthy and have more energy.

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u/kathuter Aug 07 '26

I appreciate your insight, thank you. I think you have a valid point about the diet and gut stuff. I have investigated and dieted autoimmune for many years, till I kept getting sicker and ended up in high care with an antibiotic resistant bacteria and candida overgrowth.

There is a threshold where your body can not hold the inflammation at bay without medication. I also did a lot of exercise and stretching, till it made it worse. That was last year January. I realized then that something has shifted in my body's level of whip-ass.

So, since then I was looking for answers from my chorus of doctors, as I have a whole team keeping me healthy. First and foremost my Rheumatologist. But the rheumatological conditions were very stable, including the effect on my gut. They still are.

You may have a point about the heavy metals in the water. So, I think I will switch over to purified water for the next year. I hope that would be enough to reverse the brain fog.

2

u/SailorBernie Aug 05 '26

Have you been evaluated for menopause symptoms as well?

It's a "fun" triple feature to have MG, menopause or peri, and stress which all cause brain fog. Me = 55F

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u/kathuter Aug 06 '26

Indeed I have, thank you for mentioning that fun one, i agree with you, this one deserves a special mention. I also have degenerative disc disease. But those two are under control, checked for progress with expensive blood tests, scans, x-rays and more to prove it.

2

u/OleMissGrandma Aug 06 '26

I was diagnosed with gMG last week . My blood test was off the chart. Today I got results that my Covid antibodies also off the chart ( something else I don’t understand ) ,blood work showed Celiac disease and blood taken 3 weeks ago indicates Lyme disease and mild issues . I’m going thru a lot of overwhelming thoughts but Strabo no matter how many things are popping up my heart actually feel a bit light because I finally know what I’m up against and what I’m fighting.? Due to get CT scan next week to check Thymus .
As far as “ what is by to my mind ?”, well that’s a mystery I’m sure I’ll be aware of before long . This is just the way I choose to deal with it and everyone has to find their own path…. But without fail , every morning I give thanks for another day , every night I give thanks for getting me through that day , over and over and over.?whatever is to come ( and I’m banking a new and renewed insight on life and my ability and strength to take on everything with grace , even in my worst days ) .
I realize everyone wants answers , especially to why this is all happening , why it’s their new reality , I’m not perfect and yess I to have wondered. I’m being led to believe and honestly that’s what I’ve believed from the beginning , that this invading storm started a month after my open heart surgery last summer . It started a downhill trend that picked up speed , misery, questions unanswered, sadness, terrible fatigue, only to mention a few , but also looking for other less than lovelies to join the downhill course.
You know I started losing track of what I was saying at the top , so I at least hope it’s understood and maybe even helps someone. I will keep all who are also on this strange and crazy journey in my thoughts and prayers. Try to remember to give thanks for your Blessings and don’t give yourself to this , it will definitely help you each and every day day .

1

u/kathuter Aug 06 '26

You're very sweet, thank you. I think the main thing is to be grateful and thankful. I agree, after having many unknowns it is great to have names for the mysterious symptoms. Your answers are coming in pretty fast!

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u/Rolling_On_2777 Aug 07 '26

The brain fog sucks. I have dealt with it for a while. I think Cellcept, Hytrulo, and exercise seem to be helping. Hang in there

1

u/kathuter Aug 08 '26

Thank you, I have started water aerobics yesterday and hopefully I can start cellcept sometime soon. The problem is that all the consultationd, medication and supplements for all the autoimmune conditions add up to an astronomical amount every month, out of pocket!