Motor Neuron Disease

blood tests- elevated sed rates, elevated ANA, elevated enzymes indicating muscle damage
ruled out MS, Lupus, GBS, MG, swallow test results indicate that there are some anomalies
Psychologist ruled out conversions.  

negative mri and a positive EMG

I have been combating this for 3 years... symptoms came about 6 months after septicemia
Doctor says (mootor neuron disease) but does not know what kind.  

Symptoms:
weak muscles, left hand i barely fuctioning , I can no longer write, difficulties with balance, I now use a powered wheel chair, I have difficulties with eating, I am progressively getting worse.  
from what I was once able to do, to where I am now, is a significant difference.  .I was very active in many different ways, now i cannot speak effectively.  I use an onscreen keyboard for most of my communications. My legs and arms have gotten skinny.

There is not much pain, only when I have muscle contractures.

Is there some rare disease that they cannot find?  What kind of Motor Neuron Disease do I have?

[Krisztinah2o]

p.s I guess no one replies, I have posted many times and no answer or direction.  Hmmm.

[Abhijeet Deshmukh, MD]

Hello.

The symptoms of muscle weakness and atrophy, without any sensory disturbances actually are sufficient to think of motor neuron disease. But this is when we ignore other things like the ANA, elevated ESR and the initial septicemia.

Have autoimmune causes been ruled out ?

Fever and septicemia may actually have been a trigger that hastened the muscle atrophy. But we can not tell for sure if septicemia was a cause.

An elevated ESR and ANA suggest that your immune system is acting against your own body. A disorder where a muscle atrophies is not necessarily a motor neuron disease. We have to look at primary muscular disorders as possibilities.

Was a nerve conduction study done ?

Wish I could help more at this point.

Regards

[Krisztinah2o]

When I fist started showing symptom, it was thought perhaps that there was an autoimmune type disease .   I have been to a Rheumatologist to rule out arthritis and  also to an orthpedist to rule out other problems regarding the loss of range of motion that is displayed in other areas of my limbs.
It was also suggested that I have more than 1 illness.  

At this point, I have only had the 2 EMGs. My reflexes are in tact,although grossly exaggerated in my severely effected limb. Characteristics of thi,  it did have a modest start with only my toes being effected and a bit of awkwardness to where I am now. If there is hope to stop this, I would like to but if there is none,I would at least want to have more of a concrete answer so that I may plan ahead.  It would be willing to come out there.  

[Krisztinah2o]

I'm looking at scheduling an appointment at the clinic

[Krisztinah2o]

Dr. Deshmukh:

I have answered your questions, please read it.  

[Abhijeet Deshmukh, MD]

Hello.

I can not comment upon the prognosis. I would like to know if there was any conclusive autoimmune diagnosis given to you ? Exaggerated reflexes go with upper motor neurone damage. I am feeling sad that I can not give you much input into this at this point. Even I am not able to find out the type of motor neuron disease.

But I would like to keep a track of what happens when you visit the clinic.

Regards

[Krisztinah2o]

In the beginning, I was told that it was some kind of autoimmune disease and I was never informed of the type.  In the beginning of fall 2007, I was told that it was not and that I was more likely to be afflicted with a motor neuron disease but once again, not told what kind.  
I see the changes in my own body and I really want to be able to go back to the way things used to be. I am only 40 years old, and a new grandmother, I want to fix this.  
If I can not, then I would like to know what it is so that I can move forward with understanding, a possible cure, and mostly, a chance to grieve.
kindest regards