[Melissa Mulvihill]

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.

[John]

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.

[Anne-Marie]

Yes. When I push myself too hard swimming

[barbde]

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

[Sharon Haw]

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.

[WonkyFace]

Hi everyone – new to the site today.

I am undiagnosed but over several months when I google my symptoms MG keeps coming up.
I joined the site as only in the last week, I started noticing a burning smell and again my searches led me here!
Specifically to this conversation.

The smell started when I was lying in bed, and I said to my husband my daughter must be burning candles in her room & she is not allowed. He couldn’t smell anything and then I smelt it again the next night and decided it must be nextdoor’s open fire somehow wafting into our house (we can sometimes smell their food – old Victorian terrace).

Next I smelt it in the pub, again husband couldnt smell it but assumed there was a wood fire I couldn’t see. Then later in the cinema.

I’ve been Googling like mad because I have read links between Alzheimers and smell issues, although they tend to link to reduced smell.

It is not unpleasant, like an autumn wood fire. And tends to happen from late afternoon.

Only thing that thats changed recently is I’ve started to take statins – I wonder if any of you who have had the wood burning smell are also on statins?

I am just hoping it is not a sign of something more sinister going on in that part of the brain!

[Jennie Morris]

I had this every time I had rituximab infusions. It went away within a month of the last treatment of a 4-weeks on once weekly, 3-month off cycle. I’m not on that drug anymore and no more phantom smells.

[KSK]

This is SO fascinating to me that others with MG experience these ‘olfactory hallucinations’. I have an intermittent phantom smell of car exhaust. I have never thought to see if it correlates to increased stress but plan to take notice from here on out. In April I had to restart IVIG; I don’t think I’ve had it since then but not really sure (my memory is like a sieve these days). The last time I had it, it was very troublesome. Wish it smelled like wood smoke instead of car exhaust 😁 ! !

Besides MG, I have Sjogren’s.

I am not taking any prednisone.

I currently take azathioprine and Mestinon.

 

***Please, if there are others experiencing these phantom smells, please chime in!***

Karen

[WonkyFace]

Sorry to be ignorant of this condition. Are any of those medications for lowering your lipids / cholesterol? It the only medication I have added recently, but of course it could be a coincidence.

I have stopped taking the statins, and I haven’t had the smoke smell since.

I joined here because Myasthenia Gravis had come up a few times before when I searched some off/on symptoms. I discounted it as a diagnosis when the symptoms went and I didn’t have the symptoms very bad.

Main two I have noticed is one side of the face:
– droopy eyelid and mouth
– visual, hmm, ‘differences’ they are hard to describe because when I get my eyes checked they are the same & haven’t got much worse than would be expected for normal aging

I find when I pull my hair back into a pony tail (maybe correcting the weakness) it helps with the vision.

I also have dry-eyes, and ulcerative colitis (ie some autoimmune history) + occasional flares of knee arthritis and fatigue that can not be diagnosed.

Does this sound like MG do you think?

But yes the smells element is very interesting.