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I'm new, and wanting help.

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I'm new, and wanting help.

Postby cdal » Sat Jul 14, 2018 1:28 am

Hey, everyone. I have recently been diagnosed with Conversion Disorder. And boy, does it sound weird to say it (well, type it). My struggle began over a year ago, with what I assumed was a mysterious sports injury. I would have moments where my left leg would 'lock up,' meaning I basically lost function of the limb. It would become incredibly stiff and I would struggle to move it. I became prone to partial muscle spasms. The orthopedic claimed it was a case of tendinitis, he was wrong.

A year later I continued to struggle with my leg, now experiencing back pain, but finding some relief through chiropractic care. However, things were rough. I had discovered some spinal issues but they didn't have anything to do with my leg issues, and the results were all coming back to a neurological cause. The other doctors, on the other hand, didn't believe my chiropractors.

One day in my school hallway, I knew something was wrong. Never in my life have I had the feeling I experienced in that moment. I was lucky enough to be with two friends of mine, and I grabbed onto one and said, "Something is wrong." And something was. I began losing function of my right leg, which was unusual, then my left, and then I began wheezing. (I had experienced brief episodes of wheezing but they usually took place during sports and I resulted in carrying a rescue inhaler). I began losing control of my body. And when the school staff laid me back, I began shaking and my eyes rolled up. I was terrified. But coherent. And okay again less than twenty minutes later.

I experienced an episode of this sort, though not as intense daily, every day for over a month. I had to change things in my life to accommodate for these medical issues, no longer going out besides work and or school. On the Bad Days, I'd have fits that lasted thirty or more minutes.

We began looking at the possibility of MS, Muscle Sclerosis, and I grew terrified. I went through a MRI of my brain and C-Spine, praying that I didn't have the disease nor a tumor. The results came back negative, and while I was relieved, I was still lost.

And then I had an 'episode' that lasted an hour and a half, having temporary paralysis of my left leg and losing partial hearing.

Due to my apparent symptoms, I had to spend the night in the ER. I was hardly dealt with medically, they didn't even give me an IV. I was simply monitored overnight, deemed stable, and then sat waiting in an uncomfortable hospital bed to be evaluated by the neurologists. A team of two came in the next morning and examined me for a short ten minutes, then told me I had Conversion Disorder. I personally still don't really know how to react to the diagnosis, and I didn't when I received it either. The doctor told me that he can often gauge a patient's reaction, but he couldn't read mine. And he asked me how I felt. And I asked him, "I'm dealing with a lot physically, I'm sitting in a hospital bed, and you're saying it's all caused by stress?"

And he said yes.

I have since been prescribed low-dosage seizure medication by a separate neurologist because my EEG showed abnormalities and it seems to help somewhat, but at the same time I do not feel okay. I have to wait until November to be referred to an epileptic specialist, if we're lucky enough to get the appointment, but the previous neurologists do not believe I am experiencing seizures. I am, however, reactant to light and sound at times.

I have Conversion Disorder.

I have struggled with anxiety for over three years. And to learn that it has taken control of my body is so shaming and mortifying in a way that I cannot express. I am not really okay a lot of the time, and I don't really know how to process this. Which leads me here. I need the support. Because I don't know what to do anymore.

Thank you.
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Re: I'm new, and wanting help.

Postby Wally58 » Sat Jul 14, 2018 1:04 pm

I was reading your post as I had the same symptoms with hip/leg pain and leg falling asleep. It did turn out to be a pinched nerve that was fixed by a lumbar laminectomy.
I suffered with it for over a year. I tried a chiropractor first. Chiropracty helped, but the pain, stiffness and tingling returned about 20 minutes after a session.

I went to a spine and pain management center. They signed me up for physical therapy which made things worse, especially after an 11 hour work day. They gave me a TENS unit and back brace, gave me steroid shots, suggested to me that it was all in my head, sent me for x-rays and MRIs. Put me on pain meds and gave me exercises to do.
Every appointment I was asked to state my pain level on a scale of 1 to 10 (with 10 being the most painful). I always said '9'. The only thing that seemed to help me was laying down.

I was getting very frustrated and was in near-constant pain. I stumbled sideways at work in front of the boss which didn't go down well. I would grab a cart at work for the long walk to the bathroom to use as a 'walker'. I was starting to leak on the way to the bathroom.

I then made an appointment to see a Neurologist who said "I think I can help you". I almost cried and couldn't schedule the surgery soon enough.

In the recovery room after the surgery, I could feel my toes again and it didn't hurt. Three days after the surgery I felt like a spring chicken and may have overdone things. They told me to take it slow and recover. I had 6 weeks off work to recover.

This was 8 years ago and I am grateful for the doctor who listened and did the operation. I realized now that I was being given the 'insurance company song and dance' from the spine place and should have gone to a Neurologist in the first place.

It may not be a permanent repair as I am now 60 and the condition was due to spinal disc degeneration (runs in the family). I couldn't remember a specific back injury. I take it one day at a time and if it has to be addressed again in the future, I am OK with that.

I have also been treated for anxiety/panic disorder and depression. The same medication helped with both. I don''t drink or smoke and try to take care in what I eat and what I do. I'm going to try and get some more mileage out of this old body. I will question the doctor's about future diagnosis as you found out, they can be very wrong.

Best of luck to you. :D
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