Has anyone else been told they have conversion disorder?

General General CIDP Discussion
1

I'm waiting for my EMG results to come back -- they should be available tomorrow. When I was discharged from the hospital to rehab, the doctor I had in the hospital was convinced I have conversion disorder. It's a psychological disorder that may have a variety of neurologic symptoms with no organic cause. It was originally called hysteria. I'm sure there are some people who struggle with it, but far too often it seems to be used to tell people it's just all in their head when not even a fraction of the necessary tests have been done to rule everything else out. I had had only blood tests done, and I actually mentioned it to this doctor and they just blew me off with, "well, we'll see."

Said doctor put this diagnosis in the discharge papers that went to rehab... I finally got a look at them today, and not only did they put that in, they left out nearly all of my symptoms. All that was written for symptoms was weakness in legs and "failure to thrive". Nothing about numbness, tingling, weakness in upper extremities as well as core and back, general and muscle fatigue, neuropathic pain, or that I was actually worsening. And they diagnosed me with depressive disorder, which means that they didn't even look at my medical history because I was diagnosed with major depressive disorder in 2010.

Because of that experience, I'm wondering if anyone else has had a doctor tell them it was conversion disorder because the doctor didn't care to listen.

2

Hi LMIdg, I don't know what kind of doctor you are seeing, but the next time you see him, just tell him he's a quack.. lol.. I suggest, (very very very deeply) you go get a second opinion from a neurologist who will listen. Now my neuro doesn't really listen, he already knows.. Not only is he smart, he has esp.. lol.. but really, he does know. so yeh. get another opinion so you don't hav to suffr so much anymore

3

Oh my goodness. Run, do not walk … Get a second opinion. Thrn, report this jerk!!!

4

Please fight against Conversion disorder diagnosis. I was originally diagnosed with conversion disorder after spending 4 days in the hospital having every test under the sun come back clear including my emg. I was sent home with Physical therapy and about two weeks after discharge I woke up with foot drop. I went to a different hospital and my emg came back with cidp. If the original hospital had paid a little bit more time on me then I would not have the axonal nerve damage I have (possibly). The 2nd hospital was wonderful. They started me on prednisone and apheresis immediately. I went to rehab and was in the hospital about 2mths because I loss the use of my hands and bladder as well as the foot drop. After physical/occupational and speech therapy(swallowing was affected too) I was finally released home. But its been a long road. I still have healing to do. I remember sitting in my car crying on the phone to my brother because I knew I wasn't crazy. Honey, please find another doctor. CIDP isn't a disease where time is something to waste. I now walk with a walker and due to balance issues I probably always will. Don't waste time listening to moronic physicians. You know your body!

5

I HAVE A FRIEND WHO HAD GBS BUT BEFORE PROPERLY DIAGNOSED SHE SOUGHT MEDICAL ATTENTION 7 TIMES. THE ER HAD HER SEEN BY A PSYCHIATRIST NOT A NEUROLOGIST.SHE HAD TO GO TO A DIFFERENT HOSPITAL FOR THE RIGHT DIAGNOSIS AND TREATMENT.

6

My Lucy had few doctors in the hospital when her symptoms started and only one of them suspected on GBS, and the other said its from depression (she had problems with other pupils in school) and that she can be discharge…and her tests (blood test, MR) were ok, but the last one-liquor was bad. Stress is not welcome for GBS or CIDP that’s for sure…second opinion that’s right!!!

7

Hi LMidg,

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.

Medical Records
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):
…
Your Rights
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.

Joy

8

Hopefully, I won't be seeing them again. They were a hospitalist, so once I get a diagnosis I'll be filing a complaint through the hospital. I have a consultation with a neurologist that comes in from a nearby hospital soon (possibly next week), so I hope they'll listen and know more about CIDP. Otherwise I'll get a referral through my primary care -- he's a really understanding and helpful doc. I can go through him to see a neurologist when I'm finally discharged from rehab.

CrazyRetiredNurse said:

Hi LMIdg, I don't know what kind of doctor you are seeing, but the next time you see him, just tell him he's a quack.. lol.. I suggest, (very very very deeply) you go get a second opinion from a neurologist who will listen. Now my neuro doesn't really listen, he already knows.. Not only is he smart, he has esp.. lol.. but really, he does know. so yeh. get another opinion so you don't hav to suffr so much anymore

9

I'm trying my best. I went to the ER when I couldn't walk for 2 days and the were about to send me home until they asked me to stand. I had to grab onto the nurse because I would've fallen if they weren't next to me. Then I spent 10 days in the hospital until I was admitted to a rehab hospital, where I've been since May 16th. Still can't really walk... I can do very short distances (about 15 feet) with a walker before my legs start to give out. The EMG I had done yesterday also came back "normal"... I definitely want a second look on the results, as well as another EMG since this one wasn't very thorough.

Thanks for the support.

KAbels said:

Please fight against Conversion disorder diagnosis. I was originally diagnosed with conversion disorder after spending 4 days in the hospital having every test under the sun come back clear including my emg. I was sent home with Physical therapy and about two weeks after discharge I woke up with foot drop. I went to a different hospital and my emg came back with cidp. If the original hospital had paid a little bit more time on me then I would not have the axonal nerve damage I have (possibly). The 2nd hospital was wonderful. They started me on prednisone and apheresis immediately. I went to rehab and was in the hospital about 2mths because I loss the use of my hands and bladder as well as the foot drop. After physical/occupational and speech therapy(swallowing was affected too) I was finally released home. But its been a long road. I still have healing to do. I remember sitting in my car crying on the phone to my brother because I knew I wasn't crazy. Honey, please find another doctor. CIDP isn't a disease where time is something to waste. I now walk with a walker and due to balance issues I probably always will. Don't waste time listening to moronic physicians. You know your body!

10

Yes!!!! For over 20 years they thought that most of it was all in my head while I struggled to keep a job and support my family.

They sent me to arthritis specialist and muscular skeletal specialist.

Finally when my left foot got so bad (along with other issues) and I could no longer walk on it I was sent to a foot doctor and he right away sent me to a neurologist which diagnosed me with CIDP right off.

So I did the IVIG and it help so much but ended up having to retire and go on disability. Now I have been waiting in misery for two years for Medicare to kick in because I am not 65 as of yet.

So yes, I have had many Dr's think it was mostly in my head.

How frustrating!!!!!

Good Luck

Awasos

11

I just got home from seeing a neuropsychologist. I have seen 3 neurologist and a neuromuscular specialist. I have had every test known to man done on me. All but the EMG/NCV came back 100% normal. Two have said it looks like MS without having my test results. One said I was faking it, it was all in my head. And one said CIDP. I started IVIG in October and stopped it in January because I was actually getting worse. The neuromuscular specialist did his own EMG/NCV and said I didn't have CIDP. My first and local neurologist will not see me because he said he's done all he can. I am in a sort of remission right now. I am for the most part doing better except for the pain, stiffness, fatigue that will knock me out. So I did all kinds of tests today for congnitive ability, memory, etc. I already know I have depression. Was diagnosed in May, 1991. So they can't tell me this is all my depression. When it started, I presented with drop foot. Now my feet, ankles and lower legs are swelling so much that I can't wear regular tennis shoes. I'm at a loss as what to do next. Any suggestions? Don't say Mayo. My records were sent there and they said everything had already been done that they would do so they wouldn't see me.

12

Maybe you could try one of the GBS-CIDP Foundation's centers of excellence?
There's one in Kansas City, and another one in Nashville.
http://www.gbs-cidp.org/home/get-support/centers-of-excellence/

Jordan said:

I just got home from seeing a neuropsychologist. I have seen 3 neurologist and a neuromuscular specialist. I have had every test known to man done on me. All but the EMG/NCV came back 100% normal. Two have said it looks like MS without having my test results. One said I was faking it, it was all in my head. And one said CIDP. I started IVIG in October and stopped it in January because I was actually getting worse. The neuromuscular specialist did his own EMG/NCV and said I didn't have CIDP. My first and local neurologist will not see me because he said he's done all he can. I am in a sort of remission right now. I am for the most part doing better except for the pain, stiffness, fatigue that will knock me out. So I did all kinds of tests today for congnitive ability, memory, etc. I already know I have depression. Was diagnosed in May, 1991. So they can't tell me this is all my depression. When it started, I presented with drop foot. Now my feet, ankles and lower legs are swelling so much that I can't wear regular tennis shoes. I'm at a loss as what to do next. Any suggestions? Don't say Mayo. My records were sent there and they said everything had already been done that they would do so they wouldn't see me.