MS ODOR

[peruano]

what is it?
what makes you have it?
what to do not to have it?
thanks!.. and good day for everyone!..

[SNOOPY]

I'm not sure what you are talking about.

There is no "MS Odor"

[pennstater]

I am really curious about this one. I have never heard of an MS odor. If one exists, it should make diagnosis much easier

[Tawanda]

My mother with advanced MS had it, but I think it is more like a sick person odor, not unique to MS itself. I specifically remember her having a mildew and urine smell paired with bad breath when she whispered (as she could not talk outright in my limited memory). The poor dear. My family did our best to keep her clean, but we always fell short. My siblings and my childhood was complete and utter chaos. I personally logged a great deal of time sitting next to Mom's wheelchair, but I never got used to, nor could I ever forgot, that smell of "sickness". Other family members watched her "decline", but by the time my memory kicked in, she WAS declined. She was at rock-bottom with her MS. I was living on borrowed time with her, but was too young to understand that fact...

I loved her, and still love her with all my heart, but like many other gravely ill people, she did have an odor. Nobody's fault. I hope that when and it happens to me, or if I live long enough to have that "old person smell", that the people around me will do their best to be compassionate.

[Seasha]

Interesting....I have heard of people with MS have a loss of smell, touch, sight and hearing, but nothing about a particular odor that we have. Have people remarked to you about your body odor before or is just something you smell yourself?

Two thoughts -

One, if others tell you you have a certain odor, you might want to check out and eliminate the foods you eat that might cause unpleasant body odor and make sure you maintain daily proper hygiene.

Two, if you alone smell and no one else notices, that might be blamed on MS and can be a sign of dysfunction or over-stimulation of your olfactory system. You might be experiencing improper interpretation of certain odors.

Here is another thread about olfactory dysfunction you might want to read- http://www.msworld.org/forum/showthr...making-me-SICK!

Best of luck!

[jreagan70]

Nope, no such thing as MS odor.

If you're having an olfactory malfunction, at least one other thing besides yourself will smell "off." You didn't say that you've noticed anything else having an unusual odor.

If your olfactory sense is functioning correctly, then it sounds like you're a person with MS who has an odor for another reason. Food and hygiene have already been mentioned. (You don't sound old enough or sick enough to have the sick old person odor.)

Medications can also cause body/breath odors. You said in another thread that you're treating your MS "as naturally as possible." Whatever that means, that's another possible source for body odor.

What do you think could be going on (because MS doesn't cause body odor)?

[annedocuk]

Although it falls under hygiene in many ways, if it is other people noticing this odour ( and I make use of the English spelling which in my English mind is correct!) have you been to check out your teeth?

[palmtree]

I find this an intriguing thread. I doubt anyone has done any studies on it. That's what I love about MS World forums. We teach each other about those intuitive things that aren't in the medical books.

When I was a growing up I had an aunt who had MS. Our family was very close knit so we saw each other a lot. Whenever I was around my aunt I noticed a smell. It was very much like the combination of stale urine and mildew- kind of a sweet smell. It was something that I wasn't conscious of, it was just there.

After I got diagnosed I carried on my life as usual and felt "normal". Then I got ON, spent 5 days in the hospital on IVSM, got out for a week and got another major flare. I had to go on steroids 3 times that month.

When the steroids were finished it was time to get my life back. I got back to swimming every day. One night after swimming, I was sitting eating my dinner and suddenly...THAT SMELL. my legs were still numb from the flare I had. I couldn't escape it. I smelled my skin and it was coming out of my pores.

Now, my olfactory glands are so desensitized to these terrible smells I don't know if it is still there.

As far as how to prevent it (for those who recognize its existence), about all we can do is shower a lot, keep our clothes clean and keep our diet healthy.

For those who do not recognize it's existence, let's just hope you are right.

[Tawanda]

Heightened sense of smell possibly?

I find this an intriguing thread. I doubt anyone has done any studies on it. That's what I love about MS World forums. We teach each other about those intuitive things that aren't in the medical books.

When I was a growing up I had an aunt who had MS. Our family was very close knit so we saw each other a lot. Whenever I was around my aunt I noticed a smell. It was very much like the combination of stale urine and mildew- kind of a sweet smell. It was something that I wasn't conscious of, it was just there.

After I got diagnosed I carried on my life as usual and felt "normal". Then I got ON, spent 5 days in the hospital on IVSM, got out for a week and got another major flare. I had to go on steroids 3 times that month.

When the steroids were finished it was time to get my life back. I got back to swimming every day. One night after swimming, I was sitting eating my dinner and suddenly...THAT SMELL. my legs were still numb from the flare I had. I couldn't escape it. I smelled my skin and it was coming out of my pores.

Now, my olfactory glands are so desensitized to these terrible smells I don't know if it is still there.

As far as how to prevent it (for those who recognize its existence), about all we can do is shower a lot, keep our clothes clean and keep our diet healthy.

For those who do not recognize it's existence, let's just hope you are right.

Yes, "stale urine/mildew" smell...same as my Mom's odor.

Personally, my sense of smell has become heightened with the decline of eyesight and hearing that MS has left me with. I recently went to a funeral parlor for a wake of a friend's father and nearly died myself (you'd think by now there would be some better ventilation system invented!). Mourners had been hanging out in that place for two days and I couldn't pay my respects fast enough and had to come home immediately afterwards to shower and wash my clothes! The wake was tough...I could not have done the funeral on top of that without throwing up. I have been to wakes and funerals my whole life and was never affected this bad, but that was before MS and aging dulled my eyes and ears.

[Echo2099]

Just a thought...Supplements and medications can also be a source of odors, even vitamins.

[Tawanda]

Halitosis, which is beyond bad breath is a problem one of my sisters has had to be on top of her whole life. When my husband eats differently, our closed bedroom smells odd no matter how much he brushes and gargles. The body pores can produce all sorts of weird smells based on what you're eating and how the body process it. I also have a morbidly obese acquaintance who showers every day but always smells...it is very sad.

All I know is I have had MS a long time and I don't smell. At least I think I don't. If nothing else, this thread has made me more appreciative of the ability to shower! Sponge baths are bound to leave smelly problems in their wake!