Neurologic problem or conversion disorder?

[Kot1972]

Dear Expert,
My name is Sam, I am 37 yr. female. My problem is what feels as a pretty bad muscle weakness in my upper arms. It  first appeared in my right arm a year ago, with short (1-2 hrs) episodes of extreme weakness in it, and finally it became permanently weaker than the left arm. Two months later, the same thing happened to my left arm. Since then, they both have been slowly but steadily weakening over a year. Two months ago, I had almost complete paralysis in the right arm from the shoulder to the wrist for about a week. The paralysis went away, but happened again a few times, and the arm strength has never recovered to the level it had before. The other arm also weakened, so now I have lost all abduction in my arms at the shoulders. My legs (hips) are also slowly becoming weaker, so I can not walk fast and have difficulty with slopes and stairs. But the leg weakness is only minor as compared to the arm weakness.
I had EMG at Johns Hopkins in 2010 which showed mild myopathy, and MRI (head and neck) done after my “paralysis” episode, showed nothing. So, my local neurologist said my arm weakness might be actually conversion disorder. I have pretty stressful life, but no major troubles like divorce, losing job etc. (in fact, I have a very loving family, and I am fully appreciated at work). I have no remembrance of any acute stress events preceding those episodes. Moreover, I found accidentally that this "paralysis" goes away after I do certain stretching movements of my shoulder and back. All this seems very strange for a conversion disorder, I think. Unfortunately, I was naive enough to mention my neurologist's opinion to other neurologists I was seeing (including the one at Johns Hopkins). They all turned their back to me, and now I am left all alone with my problem.
So, my question is - does it look more like a true neurologic problem or a conversion disorder? Does it make sense to see neurologists again ? Thank you very much in advance.  
      

[Kot1972]

Dear Doctor,

Thank you for your note. Answering to your questions:
1) Yes, I have myself arranged a psychiatrist consult, and a visit to a physiatrist, too. (Frankly, I just can not help but wonder, why Drs, if they mean this CD diagnosis, do not do that? I have read a ton of information on CD, and you see everywhere "the treatment should be started as soon as possible". So why linger for months? Seems like they just drop the word without any responsibility...)
2) It may sound funny, but I am having hard time answering this question. When this "attack" happens, I have no motion above the elbow, reduced motion below, and my hand remains OK. (I termed this thing a paralysis just because it was named so in the neurologist's report.). When it "goes away", the muscles moving the shoulder and the shoulder blade begin working, and that can happen in an hour, or in a day, or in a few days. But the other muscles that usually abduct one's arms at the shoulders - those never recovered since it happened two months ago, have no strength at all, and the biceps remains weak. I am sorry if my explanation looks incomprehensive, I do not know anatomy well enough. Like I said before, I learned how to work out this "stuck" shoulder with certain movements, when I do this, it gets "released" quickly (in a matter of minutes). This is why I doubt that conversion disorder diagnosis that much. It simply does not make sense to me - if the origin of muscle weakness lies in the brain (whether it is a real lesion or a psychological conflict), why should local re-positioning of the joint or muscle/ligament/whatever stretching help it? I can only think there is some local physical obstacle that interferes with the normal transfer of the signal to the muscles. I hope somebody will be able to find out and fix it with, say, physical therapy. I know that pinched nerve must cause pain, but maybe my case is just unusually painless?
Thank you again, Sam.

[Abhijeet Ghosh]

Dear Friend,
I understand your concern. It is really hard when the treating doctor doesn't pay attention to the problems...
I would like to know -
1) If you can yourself go for a Psychiatric consultation?
2) When you get a paralysis attack, how soon you recover?

Regards...

[Kot1972]

Dear Doctor,

Thanks for the fast reply. Maybe, I did not express it clearly, but when I am saying the paralysis "goes away", it does not mean I get even nearly normal strength. I have a fixed weakness in the upper arms, from 2/5 to 0/5, according to three different Drs I have seen. I am unable to lift them either forward or from the sides, but the muscles that move shoulder blades allow me to reach things, although in a somewhat unusual way. What I mean by "paralysis" is that at times my right arm becomes "unresponsive" to any effort at all at the shoulder, including the shoulder blade. And this is not "momentarily weakness", I had it for a week last time. I have been trying really hard to exercise both arms lifting weights (every day for a year already), you might guess they are lightest weights possible, and I have more and more difficulty doing it. When trying to lift the weight, I found accidentally that pressing down onto my shoulder makes my arm feel stronger, and I can lift it. Now I am doing the same thing when my arm becomes "dead", and what I call "paralysis" goes away, but I still have minimal strength in it - it is just that I am able to apply some effort to it, and use other muscles to reach things etc. Otherwise, it feels completely "stuck" at the shoulder. If I do not do this maneuver, it will be "stuck" for days (I tried!). I think, I must have some pinched nerve which releases during that pressing onto the shoulder. I would not bother a moment if this was just "momentary" paralysis. But my arms strength is really miserable all the time, try to imagine how it feels to lift things, do home chores, drive like this for months. I have a 5-year history of some metabolic (?) myopathy, it was believed to be a mitochondrial myopathy. So, when I started having issues with my arms, my neurologist believed it was the progress of the disease and sent me for a number of consults (this is why I was seeing several Drs). All of them agreed that it was a progress of mirochondrial disease, until I went to see a mitochondrial expert, and he did not confirm the diagnosis. So, now my neurologist tentatively calls it a "conversion disorder", and other Drs I was seeing lost any interest to me, and became quite rude. My Dr does not refer me to a psychiatrist or even to a physical therapy, because he is not sure about this "conversion disorder" and wants me first to go through complete research somewhere at a big clinic. But I am now afraid of seeing anybody anywhere because I had so much humiliation which I did not deserve. I have not talked to my neurologist for a long time, and he does not know about that "pressure onto the shoulder" I use. I feel he is very bored with me, and I hate being a burden for anybody. I asked you that question because I can not decide whether to go see him again or maybe find another Dr, or just give up and live like this, whatever happens. Thanks again. Sam.

[Abhijeet Ghosh]

Dear Friend,
Many thanks for the post.
To be frank paralysis is a type of disorder which is not like fever / weakness (ie it doesn't comes and goes).

To get complete cure from paralysis, it really takes a considerable amount of time and efforts.
So what is perceived as paralysis by you is, in reality something else...momentarily weakness.
I would go with the treating doctor's advice and would consider it as a small part of Conversion Disorder.
You can have a psychiatric evaluation also.. for a better analysis of this issue.

Except this, i really don't have any suggestions presently as i have not examined you and hence would rely on the inputs provided by you.

Feel free to discuss further...in case of any clarifications required.

Regards...