Strange Smell ?

[Kris-In-MI]

I haven't been officially dx'd yet. Still in the rulling out stage. But I wanted to know if anyone ever has the sense that something is burning ???? I could have swore something caught fire at the office this morning !! And this is not the first time this has happened ! Now I do have 8 lesions in my brain so would they just be effecting certain things like this ?

[CasinoKathy]

Hi Kris, yes- just the other day I smelled cinnamon and one time I smell toast and another time I thought I smelled something burning. Weird huh??!!

Not sure about the relationship this has if any to MS- but who knows. Anything is possible!

[Spydre]

For the last several years, I would sit at my desk at home, and ask everyone if they smelled such and such. Of course, no one else did. It's frustrating.

[cosake]

Yes - I smell things that no one else can smell sometimes, but I don't know if it is an MS thing . . .

[Shashi]

Last October, for about two weeks, I smelled the very strong smell of wood smoke. I thought at first it was because everyone was cranking up their fireplaces because of the cooler weather. However, when I kept smelling wood smoke no matter where I was, even in the MRI machine, I knew it was a phantom smell. I've had this happen a few times since then too. Weird!

[mjan]

Well smelling odors, bad or good is a sign of a simple partial seizure..BUT..its also related to MS. I had a whole work up for seizures, 5 day video EEG after getting lost on familiar street (jamais vu); then there is dejevu, hallucinations. I once heard MUSIC when I flushed the toilet..hahahaa.. You can laugh at that.

I also get terrible goosebumps (piloerctions), sometimes only on one leg..sometimes from the scalp all way down my body to my feet. Again.. another sign.

So the seizure/ms doc ruled out epilepsy but wants to monitor me for awhile. I was fainlly taken off anti seizures meds and can drive again.

Let your MS doc know. Hopefully he will know about this.
You'll find others here who also have odd smells that aren't there. I will wake up and smell something sweet..wishing it were true. But also have had the burnt smell.

Hope you get answers..soon.. let us know what you need ok?

Warmly, Jan

[katvar]

mjan

First I love reading your posts. There is something very comforting and nurturing in them - it might be that nice profile picture.

I have been through many of the same symptoms as you. My doctor still lets me drive and I take seizure medicine. I can't stand the thought of not driving. I did have an EEG (sleep deprived) but it was inconclusive. My neuro said that as long as I hadn't lost consciousness I could still drive.

Do you still have seizure symptoms while you are on anti-seizure medication? I still have seizure symptoms and my family feels they are worse (more frequent and some spacing out). I do need to follow up since he was on vacation but it has been a little crazy here.

[mjan]

Well thanks for the kind words..I appreciate and needed to hear that. HUGS~

Yes I was getting a lot of goosebumps and some smells..but it started to diminish. When I was on the video EEG and pushed the "event" button when I got the goosebumps or smells nothing changed on EEG showing Temporal lobe seizures. Whew..my hubby had TE since he was 6yo..took care of him which was stressful bringing up more symptoms for me. Was not DX then.

Now my first anti-seizure med I ended up with allergic reaction..so instead they upped my gabapentin which I was on for leg pain. When I got to the 3rd dose it started to make me agitated and I was eating all the time. It can cause weight gain. She was nice and took me off of it.

Also lucky to get an Epileptologist who also treats MS (not my MS doc though) so she was familiar with MS pts getting these signs.

I could not drive last yr for 6 months until I had that video study cuz of getting lost on familiar street driving..problems with distortion of time and spacing out at work. THAT spacing made me very concerned for my own patients. So I had to stop working.

I also have more cognitive issues than physical it seems.
Right now everything is fine..no more smells..few to no goosebumps. No more jamais vu or dejevu.. no more hallucinations. ONLY had a few of each of those signs.

Good luck.. what med are you on?

Jan

[mtnwillow]

I sometimes smell unexplained odors. My physician says it is a type of migraine. I often smell strong coffee or maple syrup. I also get lost in my small hometown. I certainly hope this is not seizure activity.

[katvar]

mjan

I am on Keppra. It is supposed to have the least side effects. The smells aren't as annoying to me as they are to the family. They get tired of me looking for where the smell is coming from. Which medications gave you trouble?

I don't like when the smell symptom comes with that buzzy out of body feeling (so technical I know).

[cosake]

I frequently smell the burnt wood smell -- but there is a kiln dried firewood place just down the hill from our house. I know that I had that smell before they moved there, so it's hard to know what is "real" and what is "phantom". Sometimes I think the house is on fire or something.

Then sometimes I get the electrical fire smell. like really hot electronics. Haven't figured out this one yet. I always worry that something is starting to short out and will cause a fire but we can never find it.

And, with regard to smells, the smell of coffee brewing in the morning makes me nauseous (sp?). I know it's not a phantom smell, but I am affected by the smell.

[mjan]

mjan

I am on Keppra. It is supposed to have the least side effects. The smells aren't as annoying to me as they are to the family. They get tired of me looking for where the smell is coming from. Which medications gave you trouble?

I don't like when the smell symptom comes with that buzzy out of body feeling (so technical I know).

Keppra is a good med that most Epileptologists use. Glad you are having no side effects, however there are reports and warnings with that drug of serious mood changes. So if family or you notice changes like that, talk to you doc.

It was the generic of Tripleptal that I got "that rash" which just kept spreading. For some of these meds, like Trileptal and I cannot think of the main one, (memory??) that the rash can be deadly..if and only if.. it gets to your mouth/airway..so do not worry.

Do you see an epileptologist? Because they know more than regular neuros. And simple partial seizures CAN transfer to a complex partial which is when you lose consciousness BUT you look AWAKE, can speak but are not aware of anything you are doing. So your family should be informed of this because YOU will never know you are having one. You may feel post ictal side effects but not know why.

Best to you..Jan

[Shallwearpurple]

smells

I smell cigarette smoke when there is none. I know there is none because along with other places, I smell it at home. We don't smoke. Never have. We are the only people to have ever lived here.

I know I smell other things that others don't sometimes but I can't think of what they are right now.

[Mel222]

I've smelled burning for years before DX

I thought I was losing my mind! Every night - sometimes several times a night I would wake up from a dead sleep and smell something burning...! I'd get my DH out of bed, have him walk through the house, go outside, etc...some nights this happened several times (he was not amused)...no fire, no smoke. I was on the verge of going to a psychologist because I thought I was losing it...come to find out I have MS and my neurologist said it was from my lesions. Several people I have talked to about this have smelled baking cookies, peppermint, smoke, cigarrettes, etc. I think it is a precursor for me to an exacerbation...still happens and still get my husband up

[Kris-In-MI]

This is a relief....

Glad to know I'm not going crazy !! And that this happens to everyone else as well. Thanks for all the responses..One more thing to check off my WTH? List ...You guys are great !!