Reply To: Dealing with more than one immune disorder

Sandra,

Oh, how I identify with your frustration! For a couple years now I’ve been saying to my primary doc, “My world is shrinking again as my health is failing. I have x, y and z, and nobody is putting any of it together. To whom do I go?” To which she replies, “Oh yes. That must be really hard to deal with. I want you to go to a pulmonologist, rheumatologist, hematologist and neurologist.” Then she gives me routine labs and says she’ll see me in 6 months. It makes me want to scream! I want a real doctor in internal medicine who takes the entire body into consideration. Not a specialist who’s view is myopic and not a general family doctor who is no more than a secretary doling out specialist referrals. The problem with seeing a new doctor is 1) I don’t think I could make it through trying to communicate my very involved and complicated almost 3 decades long medical history and current complaints and new diagnoses, and 2) What if it turned out that said new doctor turned out to be as poor a physician or worse than my current one?

I thought my CIDP symptoms started less than a year ago, but now that I think back, I realize that a slew of symptoms all began around 2.5 years ago. I think they are all related. My rheumatologist (who is really a doctor of internal medicine, certified in dermatology and rheumatology and practicing as a dermatologist!) thinks they are all the result of an autoimmune disease, dermatomyositis. The pulmonologist doesn’t believe so and neither does the neurologist. He says this type of demyelinating neuropathy is clearly CIDP.

That’s just the tip of the tip of the iceberg, but I won’t bore you any further. What settles my mind is that many of these proposed diagnoses have very similar treatment protocols: steroid, immunosuppressants, plasmapheresis and IV immunoglobulin.

When it comes down to it, unfortunately, we, the patients have to be amateur detectives and doctors. We have to hunt down our symptoms, their treatments and the best doctors out there to treat us. I wish that all the various doctors many of us visit would communicate better with one another. I often hear the term “team of doctors” but have never had the blessing of having a “team”.

My latest step is gradually switching to specialists all from a nearby university hospital in the hopes that they can be a team. Their individual reputations are superior so I know I’m getting a step up, at least in knowledge and experience. Now communication will remain to be seen.

Sorry I haven’t really said anything to help. I hope at least knowing you’re not the only one frustrated by this helps somewhat. Praying for your healing and God’s peace.