Sense of smell

[Stillstandingstill]

Just curious as to whether other pwp get days when their sense of smell is on overtime. Today everything is very strong and I was worried about the car fumes, the dog potentially having a urinary infection etc. I get this on and off. Not sure if it's because it's normally a bit muted or I'm oversensitive on some days.

[kaypeeoh]

Probably not the same thing but I used to have olfactory hallucinations. That is I smelled things that weren't real. I was diagnosed with MS and put on Tysabri infusions weekly. I quit taking it after two years and had no recurrence of the hallucinations. Like I said, probably not the same thing.

[Stillstandingstill in reply to kaypeeoh]

There could be an element of olfactory hallucination to it. Sometimes I can't escape a strong smell. I've just seen this though, so maybe not that unusual.

parkinsonsnewstoday.com/new....

[kaypeeoh in reply to Stillstandingstill]

I took weekly infusions of tysabri for two years. I knew when it was time for the next dose because the phantom scents would come back a day or two before the week was up. Ultimately the odors did not come back which is why I quit the infusions.

[Missy0202 in reply to kaypeeoh]

I have the same thing. It is baffling and it is not always the case, but bothersome when they come on.

[Bolt_Upright]

I have had olfactory hallucinations too. Before I was diagnosed with RBD. I thought my house was full of furnace fumes and had the furnace guy come over. One of the first signs something was no right with me.

Fortunately that was 2 years ago and has not repeated.

[ddmagee1]

My smell and taste are affected some days! So, I can relate!

[Astronomer90]

Some days my sense of smell is lot better than other days. I don't know why but it keeps happening.

[kaypeeoh]

Somewhere I read that alpha synucleon was found on necropsy in the olfactory bulbs of patients with PD.

[pyckle_syckle]

Long, long ago, —pre PD diagnosis— I used to have a keen sense of smell. T.hen one day I suddenly became aware of an awful odor that rarely left me. More often than not, it was strongly metallic. It endured for about 2 years. I was diagnosed about 4-5 years after that. By then, my sense of smell was waning and now, 21+ years in , I can barely detect anything.

I hesitate to call it a hallucination just because no one else could smelli it. I wondered at the time if I was detecting something going on within me. And it was one of the first connections I made between my prePD life experience and my current PD life experience.

I’ve since learned about Joy Milne, the woman in the UK who can smell Parkinson’s. I believe she can even detect different stages.

I don’t know for certain that what I smelled those many years ago was not imaginary nor directly connected to my PD, but for what it’s worth, I’ll allow for the possibility.

julie

[Ponieboy]

I wish mine was better. I work around sewer systems and frequently am exposed to hydrogen sulfide gas. Now H2S is a funny thing, when you catch the odor of it , it will burn out your olfactory senses and thus you won't smell it anymore. It's still there and will still kill you. I never smell it. So I make sure I carry a gas moniter with me when working those areas. Now on a side note. It use to seriously piss me off when covid was king and the drs office would ask me if I had lost my sense of smell. I would then proceed to light their asses up and then inform them that that is discrimination against people with PD. They would push back but then realize I wasn't going to back down or be bullied into being quiet.