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Burning smell and general update..
I really dont know what to make of this? Never occurred to me that it might be MG related so will see if others have had the same. Started about 4-6 months ago, noticed a burning smell in the house….comes on strong then goes….have had the sniffles as well. Olfactory nerves associated with extreme stress? as I believe it comes on when stress levels are higher..just not sure. Yet it never occurred to me to see if outside the house I get the same sensation. I think so, just not as strong.
Have been very tired recently with very low testosterone levels so having a weekly injection now as the gel didnt really do it for me. Lost a fair amount of muscle on one leg? Stopped Vyvgart (lowered my immuglobin levels far too low) and hence ivig infusions last year, perhaps I should have continued as MG issues not a serious as they once were? Chewing, speaking, swallowing etc, ok.
Stopped the steroids altogether about 2 months ago, was down to 2.5 mgs and sight better. Still taking 1000MG of Mycophenolate twice a day. Some back pain recently as they found small stones so could be trying to pass..under 3mm. But the tiredness and muscle weakness not the best plus hooked on Ambien as cannot sleep without, so trying to taper off slowly and may not be getting the right amount of good sleep, hence the tiredness..just dont know…
Well that was all a mouthful……glad I got that off my chest.
😱
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5 Replies
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What you’re describing happens with me. It started during/after I had Covid. It’s overwhelming at times. Mild at others. My sense of smell and taste were significantly affected by Covid. Just as a point of info I have Sjogrens, dysautonomia, EDS, asthma, small fiber neuropathy.
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Wow, thx for the reply. Had to look up a few things…hmmm. Have 90% of the symptoms related to dysautonomia and SFN..Thought it was dyschidrotic eczema with the tingling on hands and feet which is getting worse…what next…certainly explains the fatigue, sweating, feeling faint etc….
Wish you well.
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Yes. When I push myself too hard swimming
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I like these comment sections, they certainly help ease my worries. For months I have been smelling burning in my house, and yesterdays was really intense. I opened windows, ran my air purifiers and still go no relief. Made no sense. This morning, the smell is gone. This has happened several times during the past couple of months. I have GMG, I’m almost in a wheelchair, can’t swallow well, can’t talk without sounding like a drunk. I’m on 40 mg steroids per day, 60 mg mestinon 4x per day, and have received 2 infusions of Rituximab in the past 4 weeks. I don’t feel like anything is helping me. At my last visit, my neurologist said he wants to do another muscle biopsy to check for possible ALS. Geez how many more tests are coming my way. Glad to talk to you all. Barb
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There may be a connection. I had the intermittent burning smell for years, even 5 years before I was diagnosed in 2019. It smells most like wood smoke (not burnt toast like a stroke sign), has lasted up to 3 days and a few times was triggered by brief exposure to actual wood smoke. A brain scan found a dark spot at the base of my brain stem and my neurologist suspected it was due to an injury as a child. He didn’t know if it was causing the imaginary smoke smell. Since being treated for MG with first steroids/mestinon for a year then cellcept and with MG well controlled, I’ve had fewer episodes of much shorter duration, eg 30 minutes. I think the last episode was very short about a year ago. This area has lots of wildfires from spring to fall and that doesn’t trigger the phantom smoke smell anymore. Whether the MG treatment is coincidental or has actually had an impact is anyone’s guess.
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