Ummm, the purpose for seeing an MS specialist is so you can get treated for MS. It is worthless seeing someone who doesn't specialize in the disease you have.

This is the doc I was refered to because the specialist I want to see isn't taking new patients.

This is what I have discovered about conversion disorder. I have to say that I think it is VERY difficult to dx and that you should have the lp and try to see someone else for another opinion.

It also seems to be something which is seized on by American neuros!!!

Conversion disorder

From Wikipedia, the free encyclopedia

http://en.wikipedia.org/wiki/Conversion_disorder

Conversion disorder is a neurosis marked by the appearance of physical symptoms such as partial loss of muscle function without physical cause but in the presence of psychological conflict. Symptoms include numbness, blindness, paralysis, or fits without a neurological cause. It is thought that these problems arise in response to difficulties in the patient's life, and conversion is considered a psychiatric disorder in the Diagnostic and Statistical Manual of Mental Disorders 4th edition

Formerly known as "hysteria", the disorder has arguably been known for millennia, though it came to greatest prominence at the end of the 19th century, when the neurologists Jean-Martin Charcot and Sigmund Freud and psychiatrist Pierre Janet focused their studies on the subject. The term "conversion" has its origins in Freud's doctrine that anxiety is "converted" into physical symptoms. Though previously thought to have vanished from the west in the 20th century, some research has suggested it is as common as ever.

Conversion disorder presents with symptoms that typically resemble a neurological disorder such as stroke, multiple sclerosis, epilepsy or hypokalemic periodic paralysis. The neurologist must carefully exclude neurological disease, through examination and appropriate investigations. However, it is not uncommon for patients with neurological disease to also have conversion disorder

Ummm, then you continue looking for an MS specialist.

That means out-of-town if necessary. You continue looking for someone who can truly help you. Otherwise, you are simply spinning your wheels.

I know! I have no insurance so I have to wait for a very long time. But I would rather endure the wait:

1. I don't have a choice.
2. Only an MS specialist can truly help me.
3. Let me repeat myself, I don't have a choice; even though we are living in Obama's paradise of healthcare and treatment, I still don't have a choice, so I have to wait for a riculously long time.

I'm with RavenousWolf. . . It is very easy to just chalk it up to psychological causes. You DO have lesions, just because they are 'in the wrong places'. . .I was lucky to get my diagnosis almost straight away, not because my lesions were typical, but because there are so many (over 13). My neuro had expected to see lesions in the brain stem, which he didn't.
Have the drugs helped? Then that indicates to me that it ISN'T in your mind. . .
Do whatever you can to see a specialist!

I'd also write the MS doctor who isn't taking new patients and explain the situation in detail. I've found that doctors who aren't taking new patients, sometimes will change their minds when a personal approach is given. It's certainly worth a try.

Thanks :) I have an appointment with another doc in August, and I do plan on letting the situation be known. The meds I'm on are helping. I had been recommended by the New Neuro to titer down slowly on the keppra because she wanted me to try gabipentin an I thought I'd give it a go. Can't hurt right? Wrong. Within a few days of titiring down down from 2000 mg to 1500 mg the spasms came back and so did the tightness.
I also researched the gabipentin, and it has a high incidence of causing low red blood cell counts and increasing the white cell count. I've been seeing a hematologist for over 5 years and I've had to have blood transfusions as well as iron infusions. I don't need it to get worse. Gabipentin also has a high incidence of causing spasms and cramps. Which is why I'm on keppra. Add to that I have hashimotos and I don't metabolize meds as quickly as other people do, so I would be a walking zombie. And she couldn't or wouldn't give me a reason to go off the keppra which is better for my kidneys and liver anyways.
I have to wonder if some of the damage done to my body is from the anemia though. I felt like she was only seeing me to be a courtesy or a paycheck.
It seems like I'm getting more help from my pcp. At least she is trying to help me treat the symptoms and at least be as functional as I can, and she's not throwing drugs at me.
Sorry for extending my rant. I guess I'm more bitter than I thought. Jumping thru hoops is enough to make you become a head case if you aren't...

It was also suggested to me by my PCP that I may have conversion disorder. I also don't have the symptoms of that disorder. I read a bit on it, and it seems the onset if symptoms are very quick and short lived for the most part. My symptoms come on slowly and last for an extended period of time. I agree with you mixedupmelly, we all live with stress on a daily basis, some days are worse than others. My job is very stressful, at times I'm ready to snap but It doesnt bring on the symptoms. I don't have partial paralysis, blindness, numbness or fits. My symptoms are burning hand and foot, flu like feeling, pins and needles, things fly out of my hands, palm of my hand feels like I'm holding something hot, left arm twitches, my handwriting has gotten almost illegible because my hand doesnt work properly, and the list goes on. Yes PTSD/stress can bring on the symptoms of conversion disorder, but it also causes the flare of MS symptoms.

I am on gabapentin and it has helped me a lot with the burning in the hand and foot. According to my PCP, conversion disorder is treated with anti depressants. Im not taking antidepressenats. She also did say that many times patients are treated for conversion disorder and later it's found that they do have MS. So keep fighting for an answer mixedupmelly. I'm still waiting to see another neuro too, and I could be waiting for months. Good luck to you.

Hi melly: well I was told I had somatization disorder-spent yrs in therapy for that one and never did figure it out but I do have MS; diagnosed after many MRI's and 3 LP's. It took me falling down a flight of stairs, ending up in a trauma unit before my docs went oh this is getting serious! Put me on DMD's and I've been better since. Don't give up...see a MS specialist if you can, you should have LP to ck for oligodendral bands-+in MS. I have odd brain lesions and most of my sx are bowel/bladder/spacticity/fatigue. Good Luck, find the right doc and hang in there. We are all here for you!

Hi Melly.

I've not posted in some time, but had to when I read your topic. I know exactly how you are feeling right now. Been there done that and just want to offer my support... as someone that totally gets it.

I am in a situation where I don't have medical ins. So I was going to a general neuro clinic at our states teaching hospital. After many visit and many test to rule out other things my last visit ended with some chick (neuro on duty that day) saying she didn't think my problem was neurological at all. I walked out of that appointment so upset and haven't seen a doctor since. That was last August or Sept... can't remember which.

After requesting a copy of my records, I discovered she had labeled me with Somatization Disorder. She didn't tell me this herself, just put it in my records. In today's age of the internet it was easy to research and discover that I do not fit the diagnostic criteria for this disorder at all. The first and foremost item on the criteria list is onset before the age of 30 and here I am at 47 and have only been having real issues for a few years.

Nothing has changed for me, I still have the symptoms and have had a couple of relapse since that visit last year, but I'm now terrified of pushing forward because of what that one doctor labeled me with... and being stuck having to use that same hospital.

PLEASE be strong and do NOT give up like I did! I'm still working up the courage to go at it again with this clinic even though I hate the thought of it. In the meantime I have learned more about my body, what I can and can not do and I just keep pushing through each day.

I wish you lots of luck and strength in your journey.

Lisa