My Immunologists says:

"We use the tests we have, not the tests we need."

Remember, many of the conditions we CAN diagnose today, didn't even exist 75 years ago, because there was no knowledge, or research, or ultimately tests and diagnosis. People of course were SUFFERING, but almost in total isolation.

AND good testing and diagnosis do NOT mean treatment or cures.

We live in an ever expanding universe of understanding of the Immune System, but the Universe is only partially mapped.

Many of us live our lives in the 'unmapped areas'.

I was 72 years old before I was diagnosed with Primary Immune Deficiency Disorder and began treatment (IVIG every 4 weeks) which actually does boost my immune system. The treatment cost is over $20,000 every 4 weeks, for life. This is the pricetag of freedom from constant infections and illness.

But bolstering my Immune System so I don't get sick, does not prevent it from attacking my organs/systems.. To date there is not treatment or prevention of the damage to my ears, my moisture system (mouth and eyes), lungs, bladder, and the major nerves in my legs (PN) and the Small Nerves in my skin (SFN).

On EMG I have NO signal from two major nerves (Profound Neuropathy) and very poor signal from the third (Severe Neuropathy). I walk with a walker and am very disabled.

I take 3600 mg of gabapentin a day to keep me almost entirely free from the 'cage of fire' that is my skin from the SFN.

So if you are not finding the cause of your misery and doctors are frustrated and perhaps 'dismissive', know that you are absolutely NOT ALONE.

I recommend the book How to Be Sick by Toni Bernhard.

Regards, Elaine