I was never diagnosed with conversion disorder, but I do understand the diagnosis and understand your concern. I think you need to seek another opinion and have some information for you to consider.
Even if this doctor is correct, your medical records do not list your current symptoms. You have a legal right to accurate medical records under HIPAA. Unfortunately, part of dealing with a rare illness appears to be gathering your records for the next expert to review. You may want to get started by requesting these records be amended to include the symptoms you complained about and for which you received treatment. Do this in writing, keep copies and follow up. If your records (legally, this is referred to as PHI, personal health information) are not amended, you can complain. Here’s how to do that in your state (from Mass.gov):
You, or a personal representative with legal authority to make health care decisions on your behalf, have the right to:
• Request that DMH use a specific address or telephone number to contact you. DMH is not required to comply with your request.
• Obtain, upon request, a paper copy of this notice or any revision of this notice, even if you agreed to receive it electronically.
• *Inspect and copy PHI that may be used to make decisions about your care. Access to your records may be restricted in limited circumstances. If you are denied access, in certain circumstances, you may request that the denial be reviewed. Fees may be charged for copying and mailing.
• *Request additions or corrections to your PHI. DMH is not required to comply with a request. If it does not comply with your request, you have certain rights.
• *Receive a list of individuals who received your PHI from DMH (excluding disclosures that you authorized or approved, disclosures made for treatment, payment and healthcare operations and some required disclosures).
• *Ask that DMH restrict how it uses or discloses your PHI. DMH is not required to agree to a restriction.
- These requests must be made in writing
To Contact DMH or to File a Complaint
If you want to obtain further information about DMH’s privacy practices, or if you want to exercise your rights, or you feel your privacy rights have been violated, or you want to file a complaint, you may contact: DMH Privacy Officer, Department of Mental Health, 25 Staniford Street, Boston, MA 02114,
Phone: 617-■■■■■■■■, Fax: 617-■■■■■■■■, E-mail: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■. A complaint must be made in writing.
Doctors, Rare Disease, and Insurance matters
I could speak at length on these matters now, but doctors have, on average 12 to 15 minutes per visit with most patients per the corporate policies most face to get reimbursement from insurance companies. It takes time to build a case for reimbursement for a CIDP patient. Sadly, it’s possible that the doctor in this scenario billed for a psych disorder because it would clear through the insurance company given a history of a previous psych disorder. This does not help you build a case for CIDP as someone has to get these facts into your record. Eventually you may ask your insurance company to pay for treatment for CIDP and if you need IVIG, which is very expensive, you must demonstrate need. Also, I think some doctors are made very uncomfortable by rare disease and will not admit how little anyone knows about some conditions. These doctors will find a diagnosis that does fit into their narrow view of what could be wrong, such as conversion disorder. If you are being treated by a doctor who won’t take the time to create accurate records, correct mistakes and/or admit he or she has some limitations, you really should move on.
Psych diagnoses and CIDP
I was diagnosed with major depressive disorder a few years prior to being diagnosed with CIDP. It’s a little bit funny now that I have some perspective because I was so exhausted I believed I was terribly depressed. I could not do all of the things my peers could do and felt somewhat badly about myself for not being more upbeat. I felt like an elderly thirty-something. At that time I had what I considered some knee problems- I walked slowly, but I would never have thought I had a neurological disease. Was I depressed then? Maybe, but I also think I had CIDP and didn’t know it yet. Based on my experience, I wonder why your doctor did not explore the possibility that your previous depression was based on a chronic physical illness? I think when you find a good doctor, that person will be better able to differentiate psych issues from neurological issues. Although there can be overlap between the two, if you have CIDP, the treatment is rather specific. If you treat CIDP and you are less depressed, well, maybe that’s because you feel a bit healthier, perhaps for the first time in years. It’s actually a simpler explanation than conversion disorder, IMO.
This is a long post as is but if you have any additional questions please feel free to contact me.