I am sorry. I think my son was born with it too. mine came on gradually in my late 30s. where are you? I don't know why the MCS forums are so dead. I think most of us shun technology. do you not have any family who can help you?

I understand how you feel. I have mcs too and I feel lonely most of the time. Today was really hard for me bc i live in an appointment with my mom who does seem to completely understand how I’m affected by msc even though she’s seen how I get sick. It’s so hot outside and very hot in my room. I don’t want to leave my room bc she has the windows open everywhere else. Neighbors are doing laundry, they walk by with fragrances on, another has bbq going. But I have to leave my room to go to bathroom. I always put my mask on but I’m laying in bed feeling sick and in a lot of pain. I’m sorry. Sometimes it helps to have someone to talk to that understands and doesn’t get upset at you bc you feel sick from the fragrances. Bc people get upset that your not feeling good by the fragrances you end up depressed and lonely. On top of that your whole body is hurting and uncomfortable. It’s hard to breathe.

I understand. and somehow it seems like we with MCS as a group avoid being online. it's hard to find a support group. thank you for sending the friend request or it could have taken me quite some time to check this group again.

you are living in an untenable situation. you need to get out to nature. there are many people with MCS who just go live in tents away from people. I think there is a community in Tucson that lives like that although you might not be able to take the heat.

I was able to improve my MCS significantly by treating my obstructive sleep apnea with jaw surgery. I was not content to suffer with no one understanding exactly WHAT physiologically was causing my symptoms. I figured out that the brain fog and headaches I got after exposures was actually the pressure in my brain going up. you may have another undiagnosed condition which the chemicals are just aggravating. what are your symptoms exactly?

I am still not able to work, but at least now I can function to go to the store and other appointments without ending up in bed the rest of the day. If I stay home I am fine: it used to be I felt ill constantly, and it wasn't just the chemicals, it was from the sleep apnea. how old are you?

Hi, thank you. I’m sorry too. I’ve been looking for awhile to find a group. To answer your questions. I’m 39. I’ve also been diagnosed with fm, neuropathy, and Ibs. When I’m exposed my body pain increases, migraines, nausea, brain fog, sore throat, chest pain, when I breathe my lungs feel like they tighten up and hurt, sometimes I get wheezy, pins and needles shooting from neuropathy and sometimes get shaky. I also have a hard time going and staying asleep. Also, over time I’ve noticed my memory getting worse. Like remembering how to spell a word that I know I use to be able to. So now I depend on spell check. My mom and sister will take me to doctor appointments. If I go out I always wear my mask. But I still end up getting sick. But even though I know how bad I’ll feel, I try to get out sometimes so that I don’t go mad. But, mostly going out means doctor appointments and once in awhile to the grocery store. It’s hard when people look askance at me. I don’t understand how someone can be understanding and not drink in front of a recovering alcoholic but is not understanding with mcs.

nope, because they don't experience the same thing from the exposure, they think we are simply mental. even the most understanding people I have known, have lost patience with me. I don't let people make me feel bad anymore, they are all lacking in sufficient empathy. I wear a mask in the store too.

I think that you need to get tested for sleep apnea. you sound like you have sleep problems, and it is very likely that you are having difficulty with your breathing in sleep. there is a study that shows that people with FM have improvement if they treat their sleep apnea. I think that's all FM really is, a manifestation some people have from sleep apnea. there is something called UARS that you can read about on Dr. Steven Park's website, that you are more likely to have with all of the symptoms you have. it could even be causing some of your breathing problems. I developed asthma from exposure to Lysol spray. also I recommend you see a neurologist and ask to be tested for intracranial hypertension. it may be causing your nausea headaches and brain fog. it was causing mine. and I proved on a spinal tap that exposure to chemicals makes my intracranial pressure go up. the thing about sleep apnea is it increases intracranial pressure, so it all goes together. these things affect memory too. I have also had neuropathy problems. I had bad diarrhea before I started treating my sleep apnea.

are you on disability? I was able to get SSDI due to my MCS. you are definitely disabled so you should be able to get it, even if you have to appeal an initial denial.

the problem with MCS is that regular docs do not understand it. I am a doc and I just didn't accept that. I messed around with the naturopath for about 9 months and then I started going to specialist after specialist chasing down every symptom I had. It took 2 years but I figured out what it was, and how to solve the problem, at least enough to be able to function. it was intracranial hypertension. don't let the docs try to tell you you're crazy. I had a pulmonologist do that to me, and it pissed me off so badly that after I fixed myself with jaw surgery I published my case report and sent it to him.

do you have any trouble with your vision? do you have dizziness/vertigo? do you have ringing or whooshing sounds in your ears?

I’m sorry I haven’t responded lately. For some reason im not getting notifications that there’s anything hear. The first time I got one. I have been watching videos about a Dr. Lisa Nagy on Youtube and from her website. It hard for me to understand it all and remember it. But it makes since when she’s talking but I can’t keep it locked in my brain. I do have very bad eye sight, get dizzy, and get ringing in ears. The dizziness makes me feel like I’m drunk and it leads to my nausea. Sometimes I’ll just get nauseous and I don’t know why. Lately I wake up most days with a migraine. Before it was about 2 or 3 times a week. But the past 2 months it’s more like I wake up 2 or 3 days without one. I have some doctor appointments next week. I’m going to ask my pain management dr. about that intracranial hypertension test and about a couple others I wrote down from the videos of Dr. Nagy. She mentioned testing adrenals and for mycotoxins. My mom and sister have sleep apnea. I haven’t been tested for it. I should ask my doctor about it but I don’t like the idea of wearing a mask to sleep.

I forgot to mention I do have ssdi

oh good I'm glad you have SSDI. it DOES sound like you have obstructive sleep apnea AND intracranial hypertension. given the vision issues, the fastest way for you to get this addressed will be to go to an ophthalmologist and make sure they dilate your eyes and get a good look at your optic nerves. if those are swollen then they will have something objective to look at and a means of diagnosing you and the wheels will turn for you to get this addressed. obstructive sleep apnea can cause IIH so you must get this tested for also. I was not able to tolerate the CPAP. I was able to use BiPAP for awhile but it wasn't perfect. what made the difference was the jaw surgery. you might tolerate BiPAP, you are younger than me. my son also has OSA and IIH and MCS (and autism) and he uses a BiPAP and without it he acts drunk and has headaches. I think he tolerates it because he is younger and his tissues are less saggy and collapsible. where do you live? I might be able to recommend a better place to go for a sleep study, depending. if you have Medicare, you can go to Stanford Sleep Center in Redwood City CA which is the best. There is also an ENT there, a Dr. Stanley Liu, who can do a similar jaw surgery to what I had and it should be covered by Medicare. you can fly in one day, take a shuttle to the sleep center, sleep overnight for your study and fly back the next day. I did that from Vegas.

the other thing that you can do right now that might help, is to get a tongue retaining device. they are cheap online.
https://www.ebay.com/i/272983441931?chn=ps
get a size smaller than you would think. the small stayed on better than the medium, even though I have a huge tongue. I had doctors telling me there was nothing wrong with my airway and nothing wrong with my sleep study but I tried this thing and once I got it to stay on all night long, my head cleared for the first time in over a year. if that works for you, it can be a boon to helping you feel better but also a way to know what the actual problem is despite the idiot doctors we are forced to see, and the impetus to keep looking for the best solution.

I don't get notifications of postings to this page, but I do get email notifications when I get a "hug". so thanks for the hug to alert me and I will hug you back to do the same when I write to you, let me know if that works!

Yes, I like that idea. I’ll hug you back so you know when I write you. Thank you for your help. I’m going to get going on those things. Only thing is I can’t fly bc I’m too sensitive. Even with the respro mask I always get a migraine the day I go out and/or when I wake up in the morning. I like the mask since it’s been the best I know of for muting any kind of smell. But my neck hurts a lot from it. I was born with my neck being completely straight instead of the natural neck bone curve. I don’t know but it could possibly contribute to my migraines and neck spasms. I’ve got Medicare’s golden state insurance. I think it’s considered a supplemental insurance. I’m not sure if that’s the words for it. But I only need to show the one card and not my Medicare card. But I also can’t see any doctor. I have to see doctors in the network of Central coast physicians network or CCPN for short. I’m in San Luis Obispo county/SLO. But I don’t live in town, I’m in Los Osos. We only have one drive thru in Los Osos and it’s Starbucks. It’s nice that no drive thrus are allowed and it’s illegal to smoke in the city SLO. But the no smoking law is not enforced. I wish it was.

I am also in California. I'm up above Placerville, about an hour out of Sacramento. I would find out if you can get a referral to Stanford. I do think your neck problem may be at the root of your issues. when people have OSA, they go into a forward head posture in order to compensate, to keep their airways open. if you cannot do that, then your OSA might be worse than otherwise expected. also, it may affect the angle of your jugular veins and the way your CSF drains out of your skull. this could change the pressure gradient that allows CSF to drain normally, allowing pressure to build up in your brain. you might get some relief from a cranial osteopath. my son has to see one every 4 weeks or his behavior gets out of control and he gets headaches. they might be able to help with your skull and neck position. I have to deal with my kids now but later I will go onto the website to see if there is a good person in your area.

you might want to go to ihrfoundation.org and look at symptoms of IIH. see if you think this makes sense for what you are going through. I normally talk to people on the PTC forum on DS. I will say that every person with IIH/PTC who I have convinced to take the QEESI test for chemical sensitivity has been very positive. all those with IIH appear to have sensitivity to noise and smells, but if they get diagnosed with IIH first, they think of that as their main illness and the sensory stuff as just part of that. the docs pay no attention to the sensory stuff, so they miss the fact that we with IIH are all chemically sensitive. once I can get my head above water in terms of dealing with my kids, I intend to try to change that.

I also cannot fly anymore. I wear an N95 mask for general things and a gas mask if i pump gas or have to go to Home Depot. the problem with flying is as much because of my proximity sensitivity at this point. being around crowds of people makes me go into a panic. my skin crawls on my back so badly that I get back pain and if I am startled I can throw my back out. all someone has to do is walk behind me to startle me. when I did fly, I tended to be ill later after I got home. I remember one time I was trapped downstairs for a long time because my reaction caused such intense weakness that I couldn't climb the stairs. my husband at the time was upstairs but couldn't hear me call because he had the radio on. I don't know how much of that is intracranial pressure from the chemical reactions or if it was my adrenals. I would also get like that from my husband yelling at me. I would not be able to stand up, would just collapse to the floor. he was really scary. (we since divorced and he died of cancer.) I get like that now only after really long days like taking my kids to the fair or if I get stuck in traffic: vehicle exhaust is a big trigger for me. but I don't get anywhere near as bad as before the jaw surgery.

you would not need to fly to get to Stanford from where you are.

Thank you. My nephews came in my room to see me and I can smell products on them from wherever they have been today. It’s got me feeling sick to my stomach and feels like a lump in my throat. I run 4 air purifiers in my room. 1 is a molekule, a dyson fan/air purifier, a Honeywell fan/air purifier, and a sharper image iconic breeze. I don’t have any windows in my room but I do have a sliding glass door and can still smell when someone is having a bbq, smoking, doing laundry, and walks by with fragrances on. Someone recently asked me to go on a trip to Europe. She’s known me for almost 6 yrs. and still says to me that she doesn’t understand. I’ve sent her articles and videos about it but still she doesn’t understand. People don’t understand it’s prejudice of a disability. Most people who I know don’t even call or visit. Even the ones who claim to understand. It really hurts. Even my family thinks if it’s natural it’s okay. I can’t handle just about anything with a smell. It’s not a matter of whether I like the way it smells or not. Even though I like the smell and taste of coffee, it still makes me a little nauseous. My sister has complained about smells that make her nauseous. Like she gets nauseous from the smell of citronella. But still wears hairspray and lotions around me. My moms attitude about it is that she just can’t go without hairspray and it’s fragrance free so it should be okay. When she goes away on the train to see friends and family out of town and comes back. I can smell on her laundry detergent even though she used fragrances free detergent. But she washed and dries in our friends and family machines. She gets mad at me when she gets home and I tell her I can smell their laundry machine on her. Like it’s my fault that I’m like this. She says she’s the one who is put down. So now I mostly stay in my room except to get food and use bathroom/shower or leave to doctor appointments and the grocery store. I’ve got an uncle who lives in Orange County. He’s deaf and visits about once a year. I understand bc he’s deaf that it’s harder for him to understand but he goes over board with his disbelief and tells me that I’m faking it. So I told him he can’t stay with us anymore bc he’s mean and I always give up my bed/room to sleep on the couch for him but he doesn’t respect me when I ask him not to wear anything and only use the products we have here. Now I just think that to everyone I know I’m always the bad, mental, and wrong person. I’m going to mention all the things you taught me to my doctor and hopefully he will listen.

OMG I am totally with you on everything you said. it IS discrimination against us based on our disability,and it is technically ILLEGAL based on the Americans with Disabilities Act, depending on who is doing it. the problem is that we don't get any respect with this disability. If I can do anything to change people's attitudes before I die, I intend to try. I will write and publish, since I can't go places. If I had someone living in my home who wore hairspray I think I would go BERSERK. you can show your mother what I'm writing too. If these people love you they need to be absolutely fragrance and chemical free. Hairspray is a chemical. I hope you can get diagnosed with intracranial hypertension so you can tell her that when she exposes you to these chemicals it is making your brain swell and she might as well be punching you in the head. is this what a person does to their own child?? my father usually smells like nothing but once he showed up with all his clothes smelling like perfume. he insisted he had not changed his detergent. turns out his roommate had changed and it got all over his clothes because they use the same washer. I've had the same problem with Bounce used by our ABA therapist's mother in law in a shared dryer, even though the therapist did not use it. you cannot use other people's machines and the people you live with cannot either. last week my daughter and I got sick because my son's ABA therapist had just moved and the landlord left air fresheners in their house and they got forgotten about behind a box. the smell got on her clothes and it got in my house and made us sick. this is not a mental illness. tell me HOW it could be since you and I have never met before and yet we describe the SAME reactions to the SAME chemicals???? tell your mother that it is present in my family in THREE generations, that is not MENTAL. it is a GENETIC, PHYSIOLOGICAL problem. you really are in an untenable situation. can you really not just move out? what if you got a campervan? I got one to help me travel with my kids since we can't stay in hotels. It usually costs a bit to stay in an RV park but all you really need is a place to plug into. and you don't have to all the time because you can use flashlights and run the fridge on propane and use the propane stove (with lots of ventilation). I haven't researched it but there must be places you could park it for free, besides Walmart parking lot. you are so close to the beach. you would be better off camping down at the beach, than living in a room that is not safe.