I've barely went to the doctor in my life and never had health insurance so I don't know how it works, but I'm assuming you have to play good ignorant patient and go have a lot of unnecessary doctor visits and tests for more common conditions instead of going straight to a mast cell specialist to be tested for an obscure disease right?

I'm too sensitive to inhalants("smells") to make lots of pointless doctor visits like that. It could exacerbate my condition for several months. I'm not even sure it's worth going to the specialist even if I could get everything done in one trip let alone go to possibly several other pointless doctor visits first. Don't you have a lot more freedom when paying for the doctor visit and tests yourself?

Even if insurance gives me enough freedom I'm not sure it's worth it for someone like me. I don't plan on going to the doctor more than 1-3 times in the foreseeable future because of how sensitive I am. I never leave my home and have a simple life so very little chance for a physical accident that requires medical attention. Also I'm pretty young at age 29 so doubt I'll have any other health problems other than an MCAD.

I'm thinking it may be better to just save up money to go to the doctor instead of getting insurance. I'm not sure how much all this will cost but I don't think it would cost that much. Also does health insurance require a checkup before qualifying? And what do you guys think?

Thanks Starflower.

So how much freedom would I have with health insurance? The MCAD specialist was willing to see me without referral when I called but if I was paying with insurance would I be required to go to some clueless general practitioner and just hope I could convince him to refer me for testing for MCADs?

Besides that needlessly making me sick, me suggesting what I have would probably make me look like a hypochondriac and I'd probably get referred to a psychiatrist instead of MCAD specialist, right?

Bruce, I haven't looked at your intro, so don't know much about you. But I have a thought for you. Most doctors who treat chronic fatigue syndrome are very aware of the issue of odors, etc, as many of their patients will have multiple chemical sensitivity. Depending on how good the doctor is, they would be able to give you a thorough once over, just to check for simple things like thyroid, that could make a big difference for you. They could also possibly take you through some of the initial testing for Masto. Most will be unlikely to understand the full disease, but they get in the habit of looking at unusual things, as CFS patients are so challenging.

Now, not all CFs doctors are good and flexible physicians. You would want to find out a doctor's reputation, and have an introductory meeting with them, to see if you are  a fit. A good CFS doctor would not consign you to the loony bin. CFS patients have equally strange and difficult symptoms, some of them overlapping with mast cell disorders.

My primary physician is a CFS specialist, and he has been very interested in learning as much as he can about mast cell problems. It is a good idea to have a doctor on hand that you can turn to in the event of a medical emergency. That is the LAST time you want to be hunting for a new doctor. Plan ahead!

Check around. Many physicians in most specialties realize many patients are sensitive to odors and will have fragrance free offices. Some are safer than others, depending on the degree of education in staff and patients.

Many of the better CFS specialists do not accept insurance, as it takes more time to spend with patients than insurance will cover, so that could be good or bad. You do need to think about the upcoming federal law that will require everyone to have some degree of health insurance. Starflower had a good suggestion for you. The freedom you would have with your insurance depends on the policy. Every policy specifies what is covered and what the rules are. You might try looking for an insurance broker. A good one can explain to you the various options, and sometimes even what companies are the best, given your circumstance. You don't have to pay them,. the insurance company pays them a percentage of your premium. I had very good luck with a local agent over the years.

If you are disabled, some disability specialist can also help you look into the best form of insurance.

Best of luck in finding something that serves your needs.

In October they will be rolling out the "exchanges" that are part of the Affordable Healthcare Act, aka Obamacare.  With them, you should be able to buy insurance that would start at the beginning of 2014.  There would be no examination to get one of these plans, since they can't charge you differently based on pre-existing conditions, only age.  I would strongly urge you to look at what is offered in your state and see if any of them would make sense.  I find insurance is worth it not only because it covers some of your costs, but also because the insurers have "negotiated rates" that mean that you/they pay much less than what someone who is uninsured pays.  It makes no sense, because you'd think if I was willing to pay cash up-front, with no paperwork on their part, they'd charge less, but nooooo....most providers, particularly labs, charge way more if you don't have insurance.

Also, are you disabled by your illness?  If so, have you looked into getting government disability (Supplemental Security Income)?  If you do, you would qualify for Medicare or Medicaid, which would cover a lot of the costs.  You might, even without SSI, qualify for Medicaid if you don't have any income.  It is well worth looking into those programs to cover some of your costs, or to at least have in case you wind up in the ER.  (As sensitive as you seem to be, I would be worried about that as a possibility.)

As for whether you should go to a doctor at all, I know it can be devastating to have a setback, and that it can be frustrating to not get answers immediately, but I still think it's worth it to keep trying in the hopes of being stable enough to lead a more normal life.