How can I stay safe without my wife or dog by my side?

[turbo]

Thanks all. Monique, if you have the awareness and pro-active attitude that my wife does, you are far more valuable than a doctor. I spent hours and hours consulting with the best chemical-injury specialist in the northeast US (driving from central ME to Dartmouth and back took all day) and he gave up. He said "don't get near fragrance chemicals" essentially. Unfortunately, they are ubiquitous.

 

[Andre]

Regardless of that problem, it's still essential to have a good medical diagnosis somehow. Whatever it may be, it may be well treatable, so we must find workaround that issue.

 

[dlgoff]

So how are you feeling today turbo?

 

[turbo]

I have returned to taking daily doses of "baby" aspirin, and hopefully that will help.

After my first stroke (many years ago) aides and attendants, etc kept coming into my room wearing fragrances. I asked the doctor to release me, and he said that he would if I could self-inject Heparin. I said that I could, though I had never stuck a needle in myself before. Did a sub-cu injection of Heparin, and he signed me out. Got a big box of pre-loaded syringes and a plastic disposal bucket. Probably for less than the price of another day in the the medical "hotel". At the end of that series of injections, there was hardly a place on my abdomen that was not black or blue, but at least I was at home and I could breathe and could sleep at night.

 

[turbo]

So how are you feeling today turbo?

Much like yesterday. I have a bit less ability to sense joint position in my legs (which affects balance) but my right foot doesn't burn as much. The neurologist that treated me after the first stroke tried a lot of drugs, but none seemed to help. She prescribed Marinol, which helped a bit. When I asked her what could make the pain in my right foot go away, she said "It will never go away." The damage is in my brain-stem, and she said that even if my leg was cut off, I would still feel "pain" there for the rest of my life. That's OK. I have lived with it for about 20 years, and this latest stroke has reduced that pain a bit.

 

[Monique]

Thanks all. Monique, if you have the awareness and pro-active attitude that my wife does, you are far more valuable than a doctor. I spent hours and hours consulting with the best chemical-injury specialist in the northeast US (driving from central ME to Dartmouth and back took all day) and he gave up. He said "don't get near fragrance chemicals" essentially. Unfortunately, they are ubiquitous.

We do work out what is tolerated and not. Everything I have in the house is of a certain brand and that's what I stick to. Not everything needs to be fragrance free though, it depends on the composition of the product.

Due to your complete fragrance-free environment you probably are extra-sensitive to the smell of fragrances (lack of neural/sensory adaptation). Even the the slightest waft will appear to be an assault on your senses?

However, how does your wife feel about the matter? Does the risk of a massive stroke outweigh the respiratory/immune problems that might arise after a doctor's visit? Isn't there a doctor able to make a house visit?

 

[Mech_Engineer]

Sorry to hear about your problems, maybe you could utilize a high-end respirator to help alleviate respiratory distress during your visit to a hospital? (assuming of course they are metal-free and/or you don't need an MRI). All available on Amazon Prime with free 2-day shipping, or $4.99 overnight!

Edit: Overview of allergy masks from achooallergy.com: http://www.achooallergy.com/allergy-asthma-mask-buying-guide.asp

https://www.amazon.com/dp/B00004Z4EB/?tag=pfamazon01-20

https://www.amazon.com/dp/B000FTEDMM/?tag=pfamazon01-20

https://www.amazon.com/dp/B00009363G/?tag=pfamazon01-20

(tee hee)

 

[Evo]

Historically it takes a long time for illnesses to become recognized, so be careful with conclusions as they are presented in the Wikipedia article.

The wiki article doesn't make assumptions, it's quoting verbatim the results of the peer reviewed studies themselves.

Unfortunately, the flyer you posted was not valid medical information, it was a compilation of blurbs from non-medical, non-peer reviewed, special interest sites, as is indicated by their list of "sources".

Turbo is not at risk of harm from "fragrance" he smells, He might find the odors unpleasant, and can even cause some irritation. They are painting the apartment next door and the smell is so strong that it made my eyes water and my throat sore. However, a bit of discomfort from annoying smells will not harm him, but his refusal to see a doctor will.

Turbo needs to see a doctor, and the recommendation for people that claim MCS is for them to deal with their anxiety and get back out in public. Avoiding exposure is the exact opposite of what he should do.

The patient should be encouraged to work and to socialize despite the symptoms. The major disability from MCS is often the isolation and withdrawal experienced as the patient seeks to avoid chemical exposures. Yet there is no evidence that such avoidance is effective or that continued exposure leads to any adverse biologic effects. Therefore, the physician should not encourage the patient to avoid low-dose exposure to a variety of chemicals. Indeed, according to Sparks and associates,23 “[a] recommendation for long-term avoidance of chemical exposures is contraindicated. It is also impossible to accomplish.”

The patient should be encouraged to increase activity gradually, while keeping anxiety or other symptoms at tolerable levels. This can be accomplished by following a systematic plan of behavioral treatment, desensitizing the patient to the distress experienced in symptom-producing situations. Relaxation or breath-control exercises may be helpful, as well as teaching the patient that autonomic symptoms of arousal, such as palpitations and tremor, are not dangerous and that activity can persist despite their occurrence.27,28

http://www.aafp.org/afp/1998/0901/p721.html

 

[Andre]

... his refusal to see a doctor will.

+1, I don't know about the odor thing, but solutions for that have been suggested in this thread.

 

[Monique]

Turbo is not at risk of harm from "fragrance" he smells, He might find the odors unpleasant, and can even cause some irritation. They are painting the apartment next door and the smell is so strong that it made my eyes water and my throat sore. However, a bit of discomfort from annoying smells will not harm him, but his refusal to see a doctor will.

That's exactly the same patronizing remark that I hear often, with all respect: it is ignorant. Look up asthma, COPD etc. irritants to the lungs are a real problem.

 

[Evo]

That's exactly the same patronizing remark that I hear often, with all respect: it is ignorant. Look up asthma, COPD etc. irritants to the lungs are a real problem.

Did you read the "sources"? One is some woman's crackpot site that promotes alternative medicine. You know that is against the rules.

We're not talking about direct exposure to chemicals or even strong airborne chemical fumes. MCS is about low levels of indirect exposure, such as smelling another person's underarm deodorant. People that have "MCS" become extremely agitated by certain smells, even though there is nothing in the smell that can physically harm them. There just simply is not a high enough concentration in the surrounding air.

The only way to help turbo is to point him to valid medical research on MCS that shows he is not going to be harmed, and that there are things he can do to help him overcome his fears and get back to living life again. Feeding his fears is only going to hurt him in the long run. I actually care that he has become so fearful that he is willing to risk his life.

 

[russ_watters]

MCS is "real" insofar as he experiences it, but for this specific case it doesn't actually matter if it is psychological or physical (this isn't about how to treat MCS, it is about whether to treat a stroke), so there is no need to continue to argue about it. What matters, you two basically agree on:

Do weight up the effects of your sensitivities to the effects of another stroke! The people are right that medical attention is needed Turbo.

...a bit of discomfort from annoying smells will not harm him, but his refusal to see a doctor will.

 

[Darth Frodo]

Turbo, why don't you get a doctor to do a home visit. Following that you will have to go to the hospital as you have done before. You will have to endure the fragrances and self medicate on hephrin again.

But there is always discomfort in procedures at the hospital but they must be endured for the greater good. Two words of advice, buck up.

 

[edward]

Turbo At some point you will have to see a doctor. I would recommend this more simple mask. It is made specifically for people who are odor hyper sensitive. Just keep a couple around , like they say: "it couldn't hurt".

http://www.ei-resource.org/allergy-&-mcs-related-products/allergy%10mcs-face-masks/respro-aero-mask/

There are also activated carbon masks now available at Hardware stores.

Whether MCS has a psychosomatic origin or not is irrelevant because the effects it has on a person are real. A migraine is still a migraine.

I have followed this thread with interest because I volunteer at the VA hospital and I see a lot of Gulf war vets with MCS. The VA hasn't been able to define MCS either.

http://www.ncbi.nlm.nih.gov/pubmed/10903552

 

[turbo]

Sorry, edward. It is not that simple. I am not sensitive to odors - I have severe reactions to fragrance chemicals, especially "masking fragrances" that I cannot smell, since they block your ability to smell. Lots of "unscented" cosmetics contain masking fragrances and they are deadly. I can't smell them and have no ability to avoid them. I spent most of a winter afternoon out on the front deck after my wife opened a bottle of "unscented Oil of Olay" and started rubbing it on her hands. She had to go back inside and open all the windows.

I don't hate the smell of perfumes. Not a bit. MCS is not about that. I love going out and smelling the flowers, shrubs, trees, etc. The difference is that those smells are not made in labs with volatile organic compounds. Our whole front lawn has been taken over by flowering perennials since my wife got the gardening bug, and I love the scents. It's so nice when the apple, peach, and cherry trees are blooming.

 

[Jimmy Snyder]

Hey turbo, I'm in Massanutten, VA, just a bit south of you along the Appalachian trail. What a bummer to hear the difficult choice you face. In my opinion, you should get on the phone with a doctor and explain both of your problems. If you can document your problem with perfume you may find one who will take it seriously enough to take proper precautions. I'm in no position to tell you what to do, but keeping a stroke secret from the doctors does not seem like the right path. All the best to you and your family.

 

[turbo]

Our doctor knows about my recent stroke, since my wife had to visit him to get a permission-sheet signed so she could take time off from work as-needed. She came back home from work early yesterday after spending the morning crying and shaking, and she stayed home today.

 

[edward]

Sorry, edward. It is not that simple. I am not sensitive to odors - I have severe reactions to fragrance chemicals, especially "masking fragrances" that I cannot smell, since they block your ability to smell. Lots of "unscented" cosmetics contain masking fragrances and they are deadly. I can't smell them and have no ability to avoid them. I spent most of a winter afternoon out on the front deck after my wife opened a bottle of "unscented Oil of Olay" and started rubbing it on her hands. She had to go back inside and open all the windows.

I don't hate the smell of perfumes. Not a bit. MCS is not about that. I love going out and smelling the flowers, shrubs, trees, etc. The difference is that those smells are not made in labs with volatile organic compounds. Our whole front lawn has been taken over by flowering perennials since my wife got the gardening bug, and I love the scents. It's so nice when the apple, peach, and cherry trees are blooming.

Sorry I shouldn't have used the term odors. The website stated that the mask would remove:

The chemicals and particles that induce these conditions are not rare, but found in everyday items in everyday environments. Cleaning agents, perfumes, soap, paint, varnish, air fresheners, shaving cream, hand lotion, fabric softener all contain common chemicals that can have an effect on an individual with a chemical sensitivity.

 

[zoobyshoe]

Whether MCS has a psychosomatic origin or not is irrelevant because the effects it has on a person are real. A migraine is still a migraine.

Just for the record, migraines are not psychosomatic. Both migraines and seizures can be triggered by emotional stress because they are disorders of the threshold of neuronal firing. The affected neurons of people with seizures and migraine fire with less provocation than in healthy people. Emotional stress increases general neuronal firing, which can set the hypersensitive neurons off. This is why you find migraineurs having migraines right when they don't need them, as before job interviews, or any situation where anyone's stress levels would be elevated.

 

[rootX]

I don't hate the smell of perfumes. Not a bit. MCS is not about that. I love going out and smelling the flowers, shrubs, trees, etc. The difference is that those smells are not made in labs with volatile organic compounds. Our whole front lawn has been taken over by flowering perennials since my wife got the gardening bug, and I love the scents. It's so nice when the apple, peach, and cherry trees are blooming.

I see interesting business opportunity

 

[Aero51]

I'm hanging in there. If I go see a doctor, he and his staff will have me sick for days with respiratory distress, migraines, flared-up arthritis, etc. Then, as doctors like to do, he will want me to go to the hospital to have unspecified "tests" done, exposing me to lots of other people wearing fragrances. People in the medical industry have no idea what "fragrance-free" means. None.

Stop making stupid excuses because you are scared and just see the doctor, unless you want to live as a vegetable.

 

[dlgoff]

Stop making stupid excuses because you are scared...

Knowing turbo, scared is the last thing he's feeling.

 

[turbo]

Knowing turbo, scared is the last thing he's feeling.

Right, dlg. I am not scared. I am acting with the absolute certainty with the knowledge that a visit to the doctor's office or a visit to the hospital will leave me sick for at least several days. I cannot expect any accommodation from fragrances at such places, and expect to be incapacitated for days. Plus, my wife would have to take time off to come with me and drive me home afterward. No sane person would would want me on the road with them (disoriented and unable to function normally). They would probably rather take their chances with a drunk.

 

[Aero51]

I still think you're hiding the fact that your nervous. You can't tell me that if the doctor told you the next stroke will kill you that you wouldn't be taken back...

 

[russ_watters]

Right, dlg. I am not scared. I am acting with the absolute certainty with the knowledge that a visit to the doctor's office or a visit to the hospital will leave me sick for at least several days.

So just to be clear: you're pretty sure the MCS won't kill you if you go see a doctor, it'll just make you sick for a few days, right?

Are you aware that a stroke can kill you?

I still think you're hiding the fact that your nervous

Agreed.

 

[atyy]

So what did your doctor say, since you said he knows about it?

 

[drizzle]

At least turbo has a reason- though it's not justifying you're insistence to stay and not go to see the doctor turbo- I know a number of people who refuse to go see a doctor just to not know what they may have, even if the symptoms are obvious.

But again turbo, your chances of surviving a stroke are very low compared to your allergies (it's not even comparable).
Please understand that we care for you and want you to be good.

 

[ApplePion]

... I have a bit less ability to sense joint position in my legs...

I'm puzzled. Don't strokes usually only affect limbs on one side of the body? Yet you wrote "legs" -- plural.

 

[turbo]

I'm puzzled. Don't strokes usually only affect limbs on one side of the body? Yet you wrote "legs" -- plural.

With the first stoke, I lost the ability to judge joint position in my left leg and foot (it took me about 3 days to learn how to walk on level surfaces) and I lost most of my ability to sense temperature in my right leg, though my right foot continued to "burn" constantly through all these years. With this last event, the pain in my right foot has abated quite a bit, and I can walk more comfortably. A little up-side.

Kind of a good thing, since I have a good-sized dog that likes to walk and run. I can't run with him, but we have a big piece of property and he can run himself.

 

[ApplePion]

With the first stoke, I lost the ability to judge joint position in my left leg and foot (it took me about 3 days to learn how to walk on level surfaces) and I lost most of my ability to sense temperature in my right leg...

That's what I do not understand. If you have a stroke on the right side of your brain it affects your left side of your body, and if you have a stroke on the left side of your brain it affects the right side of your body (the nerves criss-cross so that a brain hemisphere deals with the opposite part of the body) yet your first stroke did stuff to both the left and right sides of your body.

The asymmetric affects of a stroke are very well-known and important diagnosticly. For example, if a person has blurry vision in one eye a stroke will be seriously suspected but if the vision is blurry in both eyes a stroke will be considered extremely unlikely. Muscle weakness on one side of the body is a serious indicator of a possibility of a stroke, but weakness on both sides is not a serious indicator of the possibility of a stroke. Etc. I've never heard of a stroke having effects on both sides (except speech where a single hemisphere largely controls both left and right side of speech).