Affects on smell?

Posted by jordanabrams30 @jordanabrams30, Fri, Feb 8 9:56pm

Hello

I recently was told I am borderline small fiber neuropathy and it’s expected at my 6 month follow up for it to be in full effect. I am curious though after experiencing numbness and tingling if anyone has had their sense of smell affected? Seem to be having this weird smell. I know small fiber is sensory, so could they sensor also be smell?

@jordanabrams30 You know what…..I began to notice a decline in my sense of smell, taste, and touch. Touch made sense to me but it appears that other sensory abilities are also impacted. So…I checked and found the following: "Small fiber neuropathy is considered a form of peripheral neuropathy because it affects the peripheral nervous system, which connects the brain and spinal cord to muscles and to cells that detect sensations such as touch, smell, and pain." Many of us know about the pain………others may have numbness or a decline in the sense of touch. I will refer this to @johnbishop. John, because you have numbness without pain, have you noticed the other sensory issues? I am wondering if I will be less interested in food now and lose some weight? Be safe, be free of pain and find joy in every day. Chris

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Hi @jordonabrams30. Thank you for sharing. Before I was diagnosed with SFN in 2015, I started noticing a difference with the scent of my perspiration. It wasn't a "gross" scent – just not the same as my usual perspiration. (I do wear antiperspirant/deodorant – but we all know our normal scent).

When I mentioned this to my Pain Management doctor at my next monthly visit, she told me she wanted to do the small punch biopsies to see if I had SFN. I had the numbness, tingling, pins-and-needles, etc., going on for at least 6 years prior to this new development. I read through the literature and agreed that I should have the punch biopsies done. Sure enough, all three biopsies revealed and confirmed severe SFPN.

She started me on Clonidine 0.1mg, twice a day, to help with my sweating and to see if it would maybe bring my normal scent back. I also increased my water intake. The medication did help, as did the increased amount of water each day. (I was already taking a high dose of Gabapentin and Cymbalta for my nerve pain, in addition to using Voltaren gel and Lidoderm patches).

She referred me to the Neurologist who diagnosed my severe SFN via the punch biopsies (he is in some way affiliated with Corinthian Laboratories here in AZ and has his own Neurology practice).

Was your SFN diagnosed through the punch biopsies? I was wondering what you were told about it being in full effect at your 6 month follow up? What locations do you experience your numbness and tingling?

I am sorry you have this going on. There are many others who suffer with this on Mayo Connect. You are in very good company here. Best wishes to you for a "pain down" weekend.

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@artscaping

@jordanabrams30 You know what…..I began to notice a decline in my sense of smell, taste, and touch. Touch made sense to me but it appears that other sensory abilities are also impacted. So…I checked and found the following: "Small fiber neuropathy is considered a form of peripheral neuropathy because it affects the peripheral nervous system, which connects the brain and spinal cord to muscles and to cells that detect sensations such as touch, smell, and pain." Many of us know about the pain………others may have numbness or a decline in the sense of touch. I will refer this to @johnbishop. John, because you have numbness without pain, have you noticed the other sensory issues? I am wondering if I will be less interested in food now and lose some weight? Be safe, be free of pain and find joy in every day. Chris

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@artscaping Yes I had a punch biopsy of the feet. Left food was an 8 right 14. Someone who is 31 they expected me to be at a 21. So they are trying to figure out why, and I have my first Mayo appointment March 5th, so hopeful to get answers. Right now my symptoms are mainly numbness in a couple toes

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@jordanabrams30, I hope you learn a lot about your condition on March 5th. You are right to be hopeful. The Mayo team will do everything possible to help you and to find meaning for you in the test results. Please let us know how the appointment goes. I was just at Mayo for 7 weeks as a caregiver for my partner and I cannot say enough about the team approach to medicine and the very personal, transparent care that the family, as well as the patient, receive.

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@jordanabrams30 I agree with Chris – you are in excellent care at the Mayo Clinic. (All of my doctors there, are the best). Good luck at your appointment. Take care.

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Hi @jordanabrams30, I have small fiber PN with only the numbness. I've had the PN for 20+ years but only was diagnosed at Mayo within the last 2+ years. I've always thought I've had a good sense of smell but it may have lessened over the years. I can still smell the faint odor of ozone from my SoClean CPAP cleaner when I open the lid after it has run it's cleaning cycle so I guess it's still fairly sensitive. Good luck with your up coming appointment at Mayo…you are in good hands. I know we are all a little different but I agree with @artscaping and others here, just keep learning as much as you can about your health conditions and stay as active as you can.

Liked by teetee7

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@johnbishop

Hi @jordanabrams30, I have small fiber PN with only the numbness. I've had the PN for 20+ years but only was diagnosed at Mayo within the last 2+ years. I've always thought I've had a good sense of smell but it may have lessened over the years. I can still smell the faint odor of ozone from my SoClean CPAP cleaner when I open the lid after it has run it's cleaning cycle so I guess it's still fairly sensitive. Good luck with your up coming appointment at Mayo…you are in good hands. I know we are all a little different but I agree with @artscaping and others here, just keep learning as much as you can about your health conditions and stay as active as you can.

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@johnbishop thank you for the information and the support. I am definitely someone who will go full boat to find alternative treatments should conventional medicine not work. I know about the alternative vitamin regimen you have recommended to others, and I have also found a company here in San Diego that believes they have a cure for peripheral neuropathy that will go through a phase 3 trial this year. So much great research going on, I just hope to get clarity on why I am going this path if st all possible. Thank you for the support

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The topic of sense of smell is interesting. I sometimes have a smell like something is burning (very faint) and sometimes the smell of wet cardboard. I also sometimes have a metallic taste in my mouth. Others who have Immune Disorders like mine have similar 'ghost' smells and tastes, and these are subjects for discussion. I haven't associated these odors and tastes with my neuropathies, but that seems very probable, since my Immune Disorder causes my neuropathies!

My sense of smell for real odors seems to be good, as is my sense of taste for real things I am tasting.

Regards, ElaineD

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@elained

The topic of sense of smell is interesting. I sometimes have a smell like something is burning (very faint) and sometimes the smell of wet cardboard. I also sometimes have a metallic taste in my mouth. Others who have Immune Disorders like mine have similar 'ghost' smells and tastes, and these are subjects for discussion. I haven't associated these odors and tastes with my neuropathies, but that seems very probable, since my Immune Disorder causes my neuropathies!

My sense of smell for real odors seems to be good, as is my sense of taste for real things I am tasting.

Regards, ElaineD

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@elained really great information. If I could ask, what sort of immune disorders do you suffer from? Thank you for the information!

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I have Primary Antibody Deficiency. I am deficient in IgG and IgM. I am treated with 35 grams of Immunoglobulin infused by a nurse, every 4 weeks.
The restores my antibody level and I no longer am sick all the time. I will have this IVIG for life.

Unfortunately my deficient Immune System ALSO ATTACKS the organs and systems of my body, primarily my nerves causing neuropathy. I have profound peripheral neuropathy affecting my lower legs and feet. I am completely disabled, wear leg braces, and walk with a walker. My lower legs have atrophied significantly. I also have severe Small Fiber Neuropathy which is reasonably controlled by 4200 mg Gabapentin daily.

My moisture system (tears and saliva), my lungs, my bladder, my hearing and my gastrointestinal system have all been attacked by my Immune System, nerve damage resulting. My Duke Research Immunologist, who specializes in my Immune Disorder, says that my Immune Systems uses Cytokines to attack my body. My husband is also a Research Immunologist, and he agrees with this diagnosis.

There is no treatment for the attack by my Immune System on my body, unfortunately. When my Immune System is carrying out an attack this causes an Inflammatory Response. Inflammation causes Pain, Fatigue, and Depression.

Because I also have severe Osteoarthritis (knees, hips, shoulders, neck and hands) I experience severe pain during these Inflammatory Attacks.

Ain't We Got Fun?!

Regards, ElaineD

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@elained

I have Primary Antibody Deficiency. I am deficient in IgG and IgM. I am treated with 35 grams of Immunoglobulin infused by a nurse, every 4 weeks.
The restores my antibody level and I no longer am sick all the time. I will have this IVIG for life.

Unfortunately my deficient Immune System ALSO ATTACKS the organs and systems of my body, primarily my nerves causing neuropathy. I have profound peripheral neuropathy affecting my lower legs and feet. I am completely disabled, wear leg braces, and walk with a walker. My lower legs have atrophied significantly. I also have severe Small Fiber Neuropathy which is reasonably controlled by 4200 mg Gabapentin daily.

My moisture system (tears and saliva), my lungs, my bladder, my hearing and my gastrointestinal system have all been attacked by my Immune System, nerve damage resulting. My Duke Research Immunologist, who specializes in my Immune Disorder, says that my Immune Systems uses Cytokines to attack my body. My husband is also a Research Immunologist, and he agrees with this diagnosis.

There is no treatment for the attack by my Immune System on my body, unfortunately. When my Immune System is carrying out an attack this causes an Inflammatory Response. Inflammation causes Pain, Fatigue, and Depression.

Because I also have severe Osteoarthritis (knees, hips, shoulders, neck and hands) I experience severe pain during these Inflammatory Attacks.

Ain't We Got Fun?!

Regards, ElaineD

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Hello Elaine,
I have not been diagnosed yet with SFN but I suspect I have it. I have had burning in my arms for a few years but off and on. After breaking my left arm in a fall, I experienced increase burning in both my arms especially at night. I suspect I have an autoimmune issue because I am catching every bug around. This is the second severe cold around since Christmas and a stomach flu. Of course I also experience fatigue and depression along with the pain. Is your Duke Research Immunologist local. I would like to maybe get a consultation. Thank you for your help!
Elisabeth

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@johnbishop

Hi @jordanabrams30, I have small fiber PN with only the numbness. I've had the PN for 20+ years but only was diagnosed at Mayo within the last 2+ years. I've always thought I've had a good sense of smell but it may have lessened over the years. I can still smell the faint odor of ozone from my SoClean CPAP cleaner when I open the lid after it has run it's cleaning cycle so I guess it's still fairly sensitive. Good luck with your up coming appointment at Mayo…you are in good hands. I know we are all a little different but I agree with @artscaping and others here, just keep learning as much as you can about your health conditions and stay as active as you can.

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@johnbishop as a follow up question, do you know if the Mayo Clinic in AZ does the skin biopsy? I know you are a patient of the Mn one but just curious. Thank you

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@lavieauxusa1972

Hello Elaine,
I have not been diagnosed yet with SFN but I suspect I have it. I have had burning in my arms for a few years but off and on. After breaking my left arm in a fall, I experienced increase burning in both my arms especially at night. I suspect I have an autoimmune issue because I am catching every bug around. This is the second severe cold around since Christmas and a stomach flu. Of course I also experience fatigue and depression along with the pain. Is your Duke Research Immunologist local. I would like to maybe get a consultation. Thank you for your help!
Elisabeth

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My Immunologist is Dr. Patricia Lugar, a medical doctor on the faculty at Duke University Medical Center in Durham, NC.
Her area of specialty is Immune Deficiency, particularly CVID, which is a group of Immune Deficiencies without an identified genetic cause.

Regards, ElaineD

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@jordanabrams30

@johnbishop thank you for the information and the support. I am definitely someone who will go full boat to find alternative treatments should conventional medicine not work. I know about the alternative vitamin regimen you have recommended to others, and I have also found a company here in San Diego that believes they have a cure for peripheral neuropathy that will go through a phase 3 trial this year. So much great research going on, I just hope to get clarity on why I am going this path if st all possible. Thank you for the support

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Interesting! What is the company name in San Diego. Love to see what they are doing.

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@ericvnelson

Interesting! What is the company name in San Diego. Love to see what they are doing.

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Wisantor.com their initial testing is for diabetic peripheral neuropathy, but they believe the mitochondrial issue is the same and can be applicable to other forms including idiopathic.

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