2nd Opinion

By Hershey's request, my appointment was moved back 1 day, so yesterday was my appointment. It proved profitable. The doctor was very thorough & attentive.

It seems my 1st neurologist was mistakenly saying hereditary spastic paraplegia, when he meant to say hereditary spastic paraparesis. Paraplegia refers to an inability to have any movement at all; however, paraparesis reflects difficulty in movement. So I am editing previous entries to reflect this.

Additionally, hereditary spastic paraparesis a condition that occurs only from the waist down. This does not account for problems I experience in my upper body. So my Hershey neurologist is inclined to think I have 1 of the 30-some types of spinocerebellar ataxia (SCA), the most common of which is Machado-Joseph disease.

If this diagnosis is accurate, three things do not change in my prognosis:

1. SCA is hereditary.
2. SCA is a degenerative condition.
3. SCA is not treatable; only symptoms may be treated.

Even though an exact diagnosis would not be treatable, it would be valuable for the following reasons:

1. I would know how this would progress -- what to expect.
2. I would be able to identify if certain problems I have are related to the disorder or a separate issue.
3. We would know what might be inherited by my children (depending if it is recessive or dominant).

My Hershey neurologist has ordered blood tests that would look for all of the types of spinocerebellar ataxia disorders. He doubts I have lime disease, but is having that checked, too. Please pray my insurance will cover these tests.

Thanks for your many expressions of concern & for you prayers.