Oh my, I'm so sorry. I'm speechless. No small feat. I'm not in that situation but I just had to respond. I don't see what you could do to avoid feeling left out. Thank goodness for technology and that you have a computer. Can you have visitors? Can you go outside? 5 years!!! The only thing that I can think of that is similiar was my uncle's situation. He was quadraplegic that lived longer than they ever thought he would, but his last 10-15 years he spent homebound. He didn't have sensitivites and could have guests, plus he lived on a beautiful farm with a lake outside his door. He wrote a novel and lived for him computer and dog. If you ever want to chat, just drop me a line. Many blessings to you, Kim

Wow, I thought I felt like I lost my life! First of all, evaluate your doctors that put you under this order....are they environmental doctors, or what kind? Even though some doctors know about MCS, they have no clue, really. Secondly, what caused you to get MCS in the first place and so severely.....that could answer whether or not you have to stay inside. I have lots of limitations on me due to MCS as to where I can be, and have had to leave many places, but I can still be at some, I and I keep searching to add to the list. Do you have any idea as to what caused that severe a response? My response was severe....I have a terrible illness for 2 1/2 years, lost tons of weight, severe horrible depression and anxiety (physiologically caused), and clawed my way back, not to normal, but got a lot better....but was left with the severe MCS. I almost died during that illness. But thus far do not have to live totally inside. I'm inside a lot, though. I would think they would work on detoxing you slowly, monitoring your liver, and checking all that other stuff out. Tell us your story, maybe we can give some suggestions. Also, what area of the country do you live in? Praying for you,

Beckeroo

How does one locate a Dr that has knowledge with MCS, I have it quite bad and getting a rough time at work with 23 people out of 40 that wear fragrances on a regular basis, I cough have sore throat, have bad mental fog when exposed, get frequent migraines, and they will not ask people to not wear fragrance in the office. I suffer terribly and don't know what type of Dr to try and go to.

Allergy medicines give me migraines too.

Wow I thought I was bad. I have an auto immune disease also. Seems like when I started treatment for that with steroids this MCS started. I also had to retire for my illness. I was hypersensitive to colognes for years but it became unbearable after a house renovation. I was bombarded with chemicles for a 3 month period and then we had to use bug sprays for some carpenter ants. Needless to say the house was too much for me and I ended up moving out. It was too late for my health and I have been living in a bubble every since. I moved across the country to my hometown. This home too has some issues. I have a mask I wear when I have to leave the house. I even have the thinner ones to wear in my home if people come to visit. What is really bad is that I am sick with my other disease often and have to be hospitalized. What an ordeal. Between the nurses and thier cologne and the cleaning stuff they use it is almost unbearable. I had a doctor in Ca that diagnosed me but I now live in Mi and they have never heard of MCS.
All meds give me migraines, vitamines make me sick and I have had Vertigo daily for almost 3 years. I have been on steroids for 4 years but am now going to try to get off of them and see what happens. I was told this is all in my head. I know I have some anxiety because of my being sick all the time but I do not agree.

Bunkie, there is a doctor in Michigan who specializes in MCS, He used to be my doctor when he was in Boston. Now he's at the University of Michigan (last I knew). His name is Howard Hu.

He can diagnose and validate your MCS, but, unfortunately, as we know, there still is not much for treatment out there.

Bunkie, there is a doctor in Michigan who specializes in MCS, He used to be my doctor when he was in Boston. Now he's at the University of Michigan (last I knew). His name is Howard Hu.

He can diagnose and validate your MCS, but, unfortunately, as we know, there still is not much for treatment out there.

Thanks for that info. I will look him up. I have gone to U of M for lung and vestibular stuff so far. Do you know what department he is in?

Sorry, I don't. Maybe Environmental Medicine/Toxicology?

You can do an internet query for him, the info should be there. He's seen hundreds of MCS cases. His area of expertise and study at Harvard Medical School was heavy metals and human health.

Thanks I found him. Looks like he is an internist. Will be making that appt soon.What tests did he do? What does he look for?

He did a full workup to rule stuff out. Things might have changed since I saw him years ago. He had me on Neurontin, but it didn't help. Then Prempro, because he said there was some evidence it helped premenopausal women with chemical sensitivities. I did not tolerate that med at all. I don't want you to get your hopes up, but it is good to see a very respected doctor in the field, to validate your claim, should you need to apply for disability. If your health insurance will cover a visit to him, do it!

He did a full workup to rule stuff out. Things might have changed since I saw him years ago. He had me on Neurontin, but it didn't help. Then Prempro, because he said there was some evidence it helped premenopausal women with chemical sensitivities. I did not tolerate that med at all. I don't want you to get your hopes up, but it is good to see a very respected doctor in the field, to validate your claim, should you need to apply for disability. If your health insurance will cover a visit to him, do it!

Ok I will check him out. I am already on HRT Cenestin for menopause and prednisone, small dose, for my auto immune disease. I am going to be coming down off the steroids this winter brcause they seem to be blocking all my tests. I can't do allergy testing and that could really help me. I might be eating something everyday that makes me sick. Also some of the side affexts from the steroids could be making my doctor think it is my disease. We will see.
I am on dissability for my disease but it would be nice to get some extra validation for this MCS stuff I have. I am starting to be very agoraphobic.

I know, I call it chemical agoraphobia. I just wish I didn't ignore it this Thanksgiving and go to my new in-laws' house (my son got married in August).

Air fresheners, new carpet, cologne, etc. These people don't have a clue as to what ails me. I'm invited back on Christmas, I don't know if I can take it.

I know, I call it chemical agoraphobia. I just wish I didn't ignore it this Thanksgiving and go to my new in-laws' house (my son got married in August).

Air fresheners, new carpet, cologne, etc. These people don't have a clue as to what ails me. I'm invited back on Christmas, I don't know if I can take it.

I will check him out. I am only on 2 meds right now. Prednisone and Cenestin (HRT). That is all my body can handle. No antibiotics, OTC meds, Vitamins...nothing. Anything I add will give me symptoms. I had problems with Prempro also and had to switch. I would love to get off everything for awhile and see what my body does.