Thanks, Maff. I appreciate your reply and willingness to assist. I read your story about overcoming MCS and was not only extremely happy for you but also hopeful for myself. Wouldn't wish this disorder on my worst enemy, it takes away your independence and once that's gone you lose everything, it's a domino effect, unless of course your have lots of family to take you in and support you or loads of money to sustain yourself, neither in my case.
My MCS issues started off mildly at menopause, when I went through it in early my 40s around 2007. I started noticing I was having minor issues with severe smell sensitivities. Between 2007 to 2017 I pretty much worked in sick buildings (I know that now but didn't then) and exposed to mold, bug man spraying the offices with pesticides, and ongoing remodeling of offices. The MCS symptoms started manifesting physically slowly over that time. In April 2017 my company sold their building and moved into a building that had sat vacant for 2 years, no HVAC running. In Houston, Texas, you can't do that and think there's not mold. They had also newly remodeled 2 floors right before we moved in. The day we moved in I started getting very sick. I stuck it out for 2 months, being sick every day with all these weird and some painful symptoms that didn't go away when I was out of the building. But no other coworkers were having issues, not even my officemate sharing the same office as me!! I felt like a freak and was dumbfounded. After 2 trips to my ENT/Allergy doc and 1 trip to his partner, an ENT/Immunologist, I was told by both to stay out of the building. The first doc said my environmental sensitivities were due to an overactive immune system, no treatment but avoidance. His partner diagnosed me with MCS and said stay out of the building and go see a neurologist and have a CAT scan of the brain, it's a neurological disorder. Called the neurologist, he never heard of MCS and doesn't treat it. He said go see a psychiatrist. I saw my psychiatrist again with this news and he rolled his eyes and said there's nothing wrong with you, you're just highly sensitive/allergic......ugh! Since my psychiatrist never heard of MCS he has no idea how to use gabapentin to treat it. He's willing but I need to tell him the dosing I want.
Anyway, to make a very long story short I had to quit my job last June, lost my health insurance with it, lost my apartment, lost everything because of this. I was on unemployment till the end of December and in January started looking for a job again. Had 4 offers but had to turn them down because during the 45-min interview in each of their buildings I started getting MCS symptoms that took days to go away. My daughter is letting me stay with her but she lives in an apartment and has had several tenants move out of apartments in her building. The maintenance people come in and do all the painting and other construction needed to make ready for the next tenants. Those fumes come through the AC vent and I react badly, so my days staying with her are numbered. I feel extremely hemmed in, my back up against a wall, no escape from chemicals. I think to myself "what do people do, go sleep in a tent in the woods and go to the local soup kitchen for a daily meal?"
I'm pretty angry at this whole stupid MCS thing. I hate it, want to know what caused it, I want it fixed, I want it to go away so I can lead a normal life again. I'm frustrated by all the opinions out there, i.e., "it's an immune system disorder; no, it's a toxic overload problem; no, it's a neurologic problem; no, you have a psychiatric disorder; no, we don't know what causes it and there's no cure, you're just screwed." GRRRR. And then let's not forget there's all the treatment options everyone talks about and finding the one that works for you, yeah like finding a needle in a haystack. It's all so overwhelming. It would be nice to have a doctor, naturopath, etc., work with you who knows about MCS but I checked into this as well. Seems only the rich have the opportunity to get better. What I've found is only natural medicine doctors treat MCS, they don't take insurance and the visits range from $600 to $225 per visit. That doesn't include lab tests/nutrient tests/food allergy test, genetic test or any other test they want to run, and any supplements they recommend.
Honestly, I really don't want to take gabapentin or any medicine. I'm a holistic person myself. I eat organic, drink filtered water, exercise, supplement a little with the basics, use all natural bath/body products, etc. I'm pretty sensitive to most meds anyway, especially anything that affects the CNS, so I'm skeptical whether I'll even be able to tolerate gabapentin.
Like you, I've tried hormonal balancing over the last 10 years, but even though some of my levels are low I can't tolerate them (I've tried every kind of bioidentical hormone and dosing combo under the sun).
I have a question...….on your healing journey how did you do strict chemical avoidance? How do you do this when you have no control over your environment...….you have to go to work and be exposed and then people like me are also exposed in our living environment. Was it just constantly wearing a charcoal filter mask? Did you sleep in it?
I think I'm also going to try the DNRS by Annie Hopper you mentioned, and I've purchased the I Can Breathe mask I saw you mention in one of your posts......waiting for the mask to come in the mail.
Thanks for letting me digress and vent a little, lol. And thanks again for the support and helping me research the gabapentin. Any chance you take on MCS clients and work with them remotely?
Kind regards,
Robyn
