Loss of smell and Parkinson's

Posted by robjohn @robjohn, Feb 1, 2019

I have been told by a neurologist that I have a Parkinson’s tremor but not full-blown Parkinsons. I also have a total loss of smell but everything I eat still tastes the same as always. I was a truck driver and over a 20-year span of that, I probably loaded, hauled and unloaded an average of 15 loads of anhydrous ammonia fertilizer (NH3) per week. I never thought much about the loss of smell being unusual with that much NH3 exposure until the Parkinsons connection. I would like to know more about whatever my problems are. I sat here running numbers through my calculator wondering how I can still register 95 or more on an o2 meter at age 79.

Hello, @robjohn – I"m sorry to hear that you have lost your sense of smell. I can imagine that would be frustrating.

I'd like you to meet @hopeful33250 @johnbishop @arlenephoto @stephenmcelroy @ramblyn. Hoping they may have some thoughts on your Parkinson's tremor and loss of smell, plus your concern about the ammonia fertilizer impacting this.

When your neurologist diagnosed you with a Parkinson's tremor but not full-blown Parkinson's, was the potential connection between the Parkinson's and loss of smell, and any tie-in with hauling loads of anhydrous ammonia fertilizer (NH3) as a truck driver, addressed? If so, what did the doctor say about these?

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@robjohn – Hello! My husband, now 65 yrs old, was diagnosed with Parkinson's when he developed tremor in his left hand, about 6 -7 years ago. He found out, at that time, that there was likely a connection to his loss of smell several years earlier (no idea how many.) He has worked his whole adult life doing automotive body restoration, primarily fiberglass – so we assumed (and doctors agreed) that his loss of smell was due to repeated exposure to solvents, etc – despite the fact that he typically used safety equipment. I have since read that the loss of smell is often an unrecognized symptom of PD that precedes the PD diagnosis. Only in the last year has my husband experienced (or noticed) difficulties with tasting his food. I have had to amp up the sweet and tangy flavors in his food, or he finds it "flat" and tasteless. Often, when he eats out, food that he has previously enjoyed "tastes like nothing."

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Hello @robjohn

Loss of smell (and taste) are certainly symptoms of Parkinson's. From what you have indicated the loss of smell and the tremors were the basis for your PD diagnosis. Is that correct?

Here is some information from the Parkinson's Foundation regarding the early signs and symptoms of PD, just click on the link,
https://www.parkinson.org/understanding-parkinsons/10-early-warning-signs?_ga=2.210218133.1628318010.1549316261-1195026470.1549316261
I look forward to hearing from you again. Just wondering: Any other symptoms such as balance problems, problems walking, using your hands or a very soft voice. Also have you started any PD medications, like Carbidopa/Levodopa?

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I have been very frustrated with all this. I have lots more symptoms that fit my adrenal tumor than fit Parkinson's. I don't have balance problems unless you count I could never walk a rail or tightrope. I do a lot of normal walking with a long stride and ride a bike. I work with my hands every day maintaining my older vehicles and farm equipment. Not a soft voice. The neurologists Nurse Practitioner Insisted I start Carb/Lev and Selegiline. I really cannot say whether anything has changed. There are advantages to loss of smell, I was sprayed by a skunk last week. The smell didn't bother me like it did everyone else. I am concerned I might be getting treatment for a wrong diagnosis. It certainly wouldn't be the first time. Had I not gotten another opinion three times I probably would have assumed room temperature long ago.

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@robjohn

I have been very frustrated with all this. I have lots more symptoms that fit my adrenal tumor than fit Parkinson's. I don't have balance problems unless you count I could never walk a rail or tightrope. I do a lot of normal walking with a long stride and ride a bike. I work with my hands every day maintaining my older vehicles and farm equipment. Not a soft voice. The neurologists Nurse Practitioner Insisted I start Carb/Lev and Selegiline. I really cannot say whether anything has changed. There are advantages to loss of smell, I was sprayed by a skunk last week. The smell didn't bother me like it did everyone else. I am concerned I might be getting treatment for a wrong diagnosis. It certainly wouldn't be the first time. Had I not gotten another opinion three times I probably would have assumed room temperature long ago.

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@robjohn

Was the doctor who diagnosed you with PD a movement disorder specialist? If not, you might consider seeking an appointment with one. It is important that you feel completely comfortable with your diagnosis and treatment.

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@lisalucier

Hello, @robjohn – I"m sorry to hear that you have lost your sense of smell. I can imagine that would be frustrating.

I'd like you to meet @hopeful33250 @johnbishop @arlenephoto @stephenmcelroy @ramblyn. Hoping they may have some thoughts on your Parkinson's tremor and loss of smell, plus your concern about the ammonia fertilizer impacting this.

When your neurologist diagnosed you with a Parkinson's tremor but not full-blown Parkinson's, was the potential connection between the Parkinson's and loss of smell, and any tie-in with hauling loads of anhydrous ammonia fertilizer (NH3) as a truck driver, addressed? If so, what did the doctor say about these?

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I gave him a copy of an article about it, he laid it on a table.

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@robjohn

I gave him a copy of an article about it, he laid it on a table.

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Hi, @robjohn – that is funny about the advantages of having decreased sense of smell while getting sprayed by a skunk! That is a definite benefit.

That is great you are involved with so much exercise and other physical activity with maintaining your older vehicles and farm equipment.

It does sound like you have some question marks about your diagnosis. As @hopeful33250 said, it is really important you feel comfortable with your diagnosis. Sounds like you have also gotten other opinions that differ, if I understand correctly?

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@lisalucier

Hi, @robjohn – that is funny about the advantages of having decreased sense of smell while getting sprayed by a skunk! That is a definite benefit.

That is great you are involved with so much exercise and other physical activity with maintaining your older vehicles and farm equipment.

It does sound like you have some question marks about your diagnosis. As @hopeful33250 said, it is really important you feel comfortable with your diagnosis. Sounds like you have also gotten other opinions that differ, if I understand correctly?

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Hi Lisa, I am trying to decide if I should pursue the adrenal nodule as the cause of my tremor and a few other things that better match adrenal problems such as right now I am hyper. Sleep is out of the question, also have blood pressure spikes and afib. I found out today that the heart clinic has known I have the nodule since 2002 and never told me. Blood pressure and afib are some of the things that can be caused by adrenal. Do you think at 79 years it is worth pursuing or should I just accept my fate as folks here seem to think?? Would Mayos even accept me as a patient?

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Hello @robjohn

I'm not sure that any of us have to accept our fate. At any age, it is important for all of us to find answers. Have you ever seen a doctor who addresses adrenal problems before? If not, that might be a good idea.

If you are interested in being seen at Mayo, why not give them a call? Here is information on how to schedule an appointment. Just click on the link and you will see phone numbers for all three of the Mayo locations.
https://www.mayoclinic.org/appointments
Will you post again and let us know how you are doing with your search for an answer?

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It isn’t your fate unless you let it. I plan (at 74) to keep asking and fighting. I am very interested in the adrenal bit because I am in the middle of testing after a coincidental finding of a hopefully benign tumor on my adrenal gland. I have not compared symptoms but I’ll bring it up with my Endocrinologist. If the Sinemet didn’t control PD symptoms so well I’d really wonder.

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