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-   -   Anyone gets loss of smell with neuropathy? (https://www.neurotalk.org/peripheral-neuropathy/219470-loss-smell-neuropathy.html)

Neuroproblem 04-28-2015 04:06 AM

Anyone gets loss of smell with neuropathy?
 
I notice people on here dont get loss of smell with neuropathy, mY SYMPtoms began the same time as my neuropathy, and have been at the same position i was in for 4 months already. MY LOSS of smell , now is extremely weak, my right nostril cant smell anything at, and my left nostril can smell slightly. My neuropathy is ongoing, and coming up with random symptoms. Sometimes pins and needles, another day will move on to random joint pain, prickly, a stabbing sensation. The wierdest part aside from my loss of smell, is my severe loss of sensations within my body(soft touch sensations, vibrational) sometimes i "feel" like my right arm is not even there, or appear weightless.

My presentation of symptoms are very different from other people on this category, and i cannot find anywhere online fitting my symptoms, except maybe diabetic neuropathy, some random autoimmune disease, b12 deficiency( a blood test i cant even see for myself).

I also i have a problem with my pcp, that ive been posting in the past about, refusing to listen to my symptoms. Made up her mind of what i have(mental problems). Constantly changing the subject, as to divert me away from trying to find out the cause. I have an ophtamologist this Thursday, that i believe it was referred in error(a neuro or a rheumy i felt was more appropriate)
loss of smell and and internal sensations, are constant, it had not changed in months.

Healthgirl 04-28-2015 06:58 AM

One of the first questions my neuro asked me yesterday was if I had any loss of my sense of smell or the way things taste. I can't believe your pcp thinks you are not experiencing this.

zkrp01 04-28-2015 12:20 PM

Sensation variation caution
 
I did not lose sense of smell, although I think it might have changed. When I was going to a Chiropractor he said that if I ever felt like I could not feel my butt contacting the toilet that I should take action. We were thinking that trauma may have been done to the Cauda Equina (horses tail). I agree with previous poster that loss of smell should perk up the ears of a Neuro. Don't give up, I have been to three, you can learn how not to freak them out and get them to work for you. Good Luck, Ken in Texas.

madisongrrl 04-28-2015 04:12 PM

At the onset of my symptoms, I had the opposite effect. I was hypersensitive to smells. I pretty much stopped eating and dropped weight.

Neuroproblem 04-28-2015 04:43 PM

I guess i have to tell the opthamologist this. I heard of people getting hypersensitivity to smells, usually due to infections or not. She doesnt believe i have it because i keep saying the symptom cycle, i should been more clearer and said pins and needles.
the loss of smell and sensations happened all of the sudden. hOPEFULLY THE eye doctor can refer me to a neuro or at least rheumatologist, but it really takes several months to get a appointment, and i dont want to be referred to the same PCP, that thinks its all in my head, She had no interest in diagnosing me other than with a mental problem, she kept changing the subject.

SoftTalker 04-29-2015 07:34 PM

New dx of PN here.

Yes, loss of smell (of almost everything) and now I realize my sense of taste is off.

Recently cooked something for a friend; said it was a little too spicey! I thought it was too mild. Hmmmm........

Neuroproblem 04-30-2015 12:38 AM

Quote:

Originally Posted by SoftTalker (Post 1139220)
New dx of PN here.

Yes, loss of smell (of almost everything) and now I realize my sense of taste is off.

Recently cooked something for a friend; said it was a little too spicey! I thought it was too mild. Hmmmm........

I was looking at this forum specifically, but none of them had neuropathy and loss of smell at the same time, My PCP was no help at all, in fact i think she was trying to divert from the actual diagnosis. My loss of smell has not come back, in the 3.5 months, it went approximately 30-50% in the first few weeks, but essentially went to 5-10%, i have looked online that smell loss of taste does not come back easily or at all.
The other strange thing, nobody here has loss of soft sensations in your organs, usually you can feel when your eating or peeing, i can barely detect. I still think this has something to do with the diphenhydramine i took, but im not sure.

Yesterday i developed food poisoning, and i did not feel the urge to vomit, until my stomach involuntarily contracted and my dinner came out at the sink, i puked 2 more times, and had diarrhea as well. note, i could barely feel it, only when its about to come out.
Ill have to tell the opthamologist about my other symptoms, that arnt eye issues, whether or not he will help me is beyond me. I have a feeling, "ask your pcp" to refer to another specialist. I know she is just dragging me along in the hopes i accept your mental disorder diagnosis, which i find pretty offensive, She was unwilling to do other tests. being in a welfare system sucks pretty much, because you have no say as to what tests or doctors you can see.
The only other provider i believe, is anthem blue partnership plan,(find your own doctors),i have heard horror stories about that insurance group though.

mrsD 04-30-2015 09:18 AM

Neuroproblem... I have a suggestion for you. From reading your posts, I suspect you are not communicating well with your doctors.

It is not common for patients to describe symptoms like you are doing here. I know that males tend to get better attention from doctors than females...this is a well known thing. And some males are vague about symptoms too... it can be a cultural thing. (my husband is like this). If you are telling too many details to your doctor, she is going to see this as a red flag leading to her diagnoses.

But telling a doctor that you cannot feel your "organs", etc is very odd. Normally we do not feel our organs...they run on the autonomic nervous system for the most part.

Sometimes people don't get a nausea warning before vomiting.
Sometimes people get only severe nausea and no vomiting.

You did get a warning because you made it to the sink in time.
That suggests you had a normal reflex, but just little time to think about it. Often viral stomach flu is quick and severe like this. Food borne illness would give some cramping as a warning sometimes.

Continuing to blame Benadryl for your other symptoms, is also not in your favor. Most likely the virus you had may have been a trigger for your current problems. So just tell any new doctor, that you had a virus and since then you lost your sense of smell, etc. Leave the Benadryl out... as it is a DETAIL that YOU find important. You need to let your doctor decide what is important.

Doctors today don't have the time to ferret out details unless there is a good reason to do so. Most illnesses, are self limiting, they know, meaning that the body will heal, and get better on its own. The patients however, expect doctors to do something every time they visit the doctor's... so this often causes conflict and misunderstanding. If the doctor does not explain, self limiting, to the patient, the patient may think they are being ignored. Not all doctors are perfect communicators either!

It is really important to communicate carefully these days or this might happen to you (or has already started to happen)...
http://neurotalk.psychcentral.com/sh...ght=factitious

Neuroproblem 04-30-2015 02:55 PM

Quote:

Originally Posted by mrsD (Post 1139329)
Neuroproblem... I have a suggestion for you. From reading your posts, I suspect you are not communicating well with your doctors.

It is not common for patients to describe symptoms like you are doing here. I know that males tend to get better attention from doctors than females...this is a well known thing. And some males are vague about symptoms too... it can be a cultural thing. (my husband is like this). If you are telling too many details to your doctor, she is going to see this as a red flag leading to her diagnoses.

But telling a doctor that you cannot feel your "organs", etc is very odd. Normally we do not feel our organs...they run on the autonomic nervous system for the most part.

Sometimes people don't get a nausea warning before vomiting.
Sometimes people get only severe nausea and no vomiting.

You did get a warning because you made it to the sink in time.
That suggests you had a normal reflex, but just little time to think about it. Often viral stomach flu is quick and severe like this. Food borne illness would give some cramping as a warning sometimes.

Continuing to blame Benadryl for your other symptoms, is also not in your favor. Most likely the virus you had may have been a trigger for your current problems. So just tell any new doctor, that you had a virus and since then you lost your sense of smell, etc. Leave the Benadryl out... as it is a DETAIL that YOU find important. You need to let your doctor decide what is important.

Doctors today don't have the time to ferret out details unless there is a good reason to do so. Most illnesses, are self limiting, they know, meaning that the body will heal, and get better on its own. The patients however, expect doctors to do something every time they visit the doctor's... so this often causes conflict and misunderstanding. If the doctor does not explain, self limiting, to the patient, the patient may think they are being ignored. Not all doctors are perfect communicators either!

It is really important to communicate carefully these days or this might happen to you (or has already started to happen)...
http://neurotalk.psychcentral.com/sh...ght=factitious

i told many times i gave alot of details to the pcp, but she was kinda ignorant to the whole situation, she dismissed all my symptoms and started to imply that i just made it all up, if you read my previous post. I even printed out a big list for her to see. Because i let her access to my "Kaiser records, where i had many visits to specialists for other reasion, which 1 or 2 did not find anything significant(1 of them an ENT laughed me out of his office and basically implied i wasted his time, by making an appointment), she now thinks i only go to doctor to look for drugs or attention, hence the suggestion "therapist" mental problem. I also said pins and needles waxs and wanes, but she assumed that all my symptoms did that, but it wasnt true, none of them actually went away, in fact the loss of sensation became more apparent after pins and needle started to diminish. you can feel the sensation of a full bladder, or hunger of full stomach, but i lost all those sensations in january. it takes months just to schedule the appointment, i have no say as to what doctors i can see, if i had the ability to see other pcp, or specialist, i would drop this doc in an instant.
I think i need a neuro or some kind specialist that deals in autoimmune, because i do have AA(alopecia areata i developed 7 years ago), which often associated with other autoimmune diseases.
I always though guillan barre to be a possibility, but i had no weakness, or pain that is significant, or paralysis. It can account for smell loss,maybe.

Zatochi 05-01-2015 04:56 PM

I'm the exact opposite. I smell strange smells all the time. I can get in my car and smell roses. I have not had a rose or air freshener in my car since I have owned it. This may sound strange but I smell body odor all the time at work. This just started about 3 weeks ago. There are only 3 employees where I work. At first I thought it was me causing the odor but I have ruled me and the employees out. It's just really strange. :confused: The other 3 employees say that they do not smell anything....weird.


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