Loss of smell

[Cja1956]

Hello, all. About a year ago, I was riding in the car with my family and I suddenly started to smell gasoline. I mentioned it to everyone and no one else seemed to know what I was talking about. The chemical smell continued on and off for months. Eventually, I lost my sense of smell completely. Foods I used to love have no allure for me. My boyfriend has to smell the milk to make sure it’s not sour. I am post ET MF and take hydroxy, fedratinib, and baby aspirin. Has anyone else experienced this?

[Uzza]

Yes, I lost my smell totally then it came back partially.

Cheers,

Uzza.

[Scrollernut]

Kinda, not a real big problem but it’s there. Or should say not there! Having more problems with taste. Nothing taste good anymore and losing appetite big time. On 500 mg Hydrea every other day with ET JAK2 positive going on 3 months diagnosed. Such is life. Things could be worse, so much worse.

[Cja1956 in reply to Scrollernut]

Yes, smell and taste are strongly connected. Things I used to love often either taste bitter to me or have no taste at all. My appetite has been affected, as well.

[Scrollernut in reply to Cja1956]

Look at the bright side....I’ve lost a few much needed to lose pounds. ❤️❤️❤️

[Pte82 in reply to Scrollernut]

Look into thiamine deficiency as a possible cause. A magnesium deficiency can result in a thiamine deficiency as enzymes created by magnesium activates thiamine. Hu causes magnesium loss. Search on "Krispin magnesium" for magnesium info and other causes of magnesium deficiency. Be aware boron helps increase magnesium absorption. "nothing boring about boron" is worth searching.

[Cja1956 in reply to Pte82]

Thanks. I’ll look into that.

[Scrollernut in reply to Pte82]

Interesting. Thanks

[Pte82 in reply to Scrollernut]

I want to add to my earlier post and let you know about a fat soluble relative to thiamine I found while researching macular degeneration called Benfotiamine that converts to thiamine in the body and complements B complex. Check it out and as always consult your health professional before using any supplement.

[Cja1956 in reply to Pte82]

Thanks. I so appreciate your taking the time to help me.

[Scrollernut in reply to Pte82]

Interesting comment. I’m being treated for macular degeneration. Taking AREDS 2 and all seems ok for now.

[Pte82 in reply to Scrollernut]

My wife's retina doctor put her on AREDS2. She stopped after several moths because the left eye turned wet and she lost faith in the product. This article made me aware of Benfotiamine however if you do a search using "benfotiamine macular degeneration" you can broaden the information on it. While "cure" is always suspect the info in this link and others you'll encounter should give you a well rounded awareness that you can discuss with your doctor.

knowledgeofhealth.com/ignor...

lvcenter4sight.com/the-bene...

[clubdino]

Hello. I came across this paper today and thought about your post. Vitamin D deficiency can be linked to loss of smell. People with MPNs are more prone to Vitamin D deficiency. But taking a Vitamin D supplement is controversial with us because it may be linked to progression of MF. Here is the link if you are interested:

ncbi.nlm.nih.gov/pmc/articl...

MPNs and Vitamin D Deficiency: onlinelibrary.wiley.com/doi...

And now thinking about it, I wonder if a lot of MPN patients chronic pain is due to Vitamin D deficiency.

[Cja1956 in reply to clubdino]

Sorry, Clubdino, I don’t know how I missed this four months ago. But it’s very interesting information. I think I will have my doctor test my vitamin D levels at my next visit . Thank you for your reply. I really appreciate it.

[JaK2ET]

As an MPN snail/tortoise I've only just read your post and the rest of this interesting thread.

A temporary, short-term loss or partial loss of the sense of taste or smell is not unusual in connection with infections (including CoViD19); I myself have experienced it a few times over the years. There is also some tendency for the ability to taste and smell to decline generally with age.

However, a longer-term or permanent marked loss of the sense of smell should not be ignored: it can be significant in itself (leading - as already suggested - to possible loss of appetite, loss of enjoyment of life, inability to smell food that has gone off or smoke from fire, etc) and it can also be an early warning of some serious problems. Have you asked your doctor about this symptom?

It happens that I recently heard a programme on the BBC radio (World Service I think) about the loss of sense of smell experienced by some CoViD19 patients, lasting even months after their recovery from the infection. Mention was made of the possibility of rebuilding the sense of smell through olfactory exercise, just as one might try to rebuild a weakened or damaged muscle by physical exercise. The following item may be a starting point for finding out more:

whyy.org/segments/retrainin...

Thank you for raising this important topic.

[Cja1956 in reply to JaK2ET]

This is why I love this site. There is so much great information and many caring people. Thanks so much for your thoughtful reply and for sending the article. I still have not regained my sense of smell, so maybe I will look into it further.

Thanks again and be well.

[MaggieSylvie in reply to JaK2ET]

Thanks for that JAK2ET. I'm glad it's only a handful of scents we need to work with, and perhaps not all, as I can smell cloves.

It was a pity I couldn't work out what the smell was in my office in the nineties. People were coming in, wrinkling their noses, and saying "What's that smell?" It turned out to be a dead rat under the floor! It was so bad that if I went into other people's offices, they said they could smell it on my clothes. The sell of burning cooking that I have started to recognise - is difficult to determine where it comes from. Think it's usually from next door.

[MaggieSylvie]

I lost my sense of smell some years ago and my GP at the time thought I had had a virus that had damaged some of my sensors. Passing cars smelt of Fairy Liquid; most things at that time smelt "pooey" though that has gone, and there are frequently smells that I should know but cannot now recognise until I think about it i.e bread making. I saw something on TV yesterday about sniffing certain fragrances that retrained the sense of smell to return. I wish I had know that was possible. To smell a rose, I have to put my nose right inside one, and I worry about my house being smelly to others but not to me, though I do use fragrances that I can smell. I was only diagnosed with MDS/MPN recently, so no connection.