It is tough. I go to the doctor and my neurological tests aren’t so bad from my last visit. My timed walking was increased by only 2 seconds. No big deal. My range of motion was pretty much the same range as it was last visit. My MRI shows no activity. Yet I’m worse. Everyone who is involved in my daily life knows I’m worse. It’s frustrating. It’s not like my doctor doesn’t believe me. It’s not like my doctor doesn’t understand. It’s just on these little tests I don’t look too bad. Yet I am.
Why? It’s the brain atrophy that causes the progression. https://my-ms.org/symptoms_atrophy.htm
Atrophy is the progressive degeneration or shrinkage of muscle or nerve tissue. In multiple sclerosis (MS), two types of atrophy are common: muscle atrophy (due to disuse of specific muscles) and brain or cerebral atrophy (due to demyelination and destruction of nerve cells).
Cerebral atrophy is a common feature of many of the diseases that affect the brain. Atrophy of any tissue means loss of cells. In brain tissue, atrophy describes a loss of neurons and the connections between them. Atrophy can be generalized, which means that all of the brain has shrunk or it can be focal, affecting only a limited area of the brain. The result of this type of atrophy can be a decrease of function in the affected area of the brain. If the cerebral hemispheres are affected, conscious thought and voluntary processes may be impaired.
Brain atrophy isn’t routinely checked. It is expensive to measure the brains fluid and shrinkage year to year with MRIs. It is the atrophy that cause my neurological tests to not show my continued decline that I feel. My brain is shrinking.
This is where a lot of progressive research is geared to. Slowing down brain atrophy. It is also what many drugs are now being targeted for like Ibudilast, high dose biotin, simvastatin and alpha lipoic acid.
It is difficult to go to your doctor and they don’t see what you feel. She certainly knows I’m not crazy or making any of this up. It makes me feel better in a strange way to have an answer why her tests don’t show what I feel. Not that the answer is a good thing. I just know I’m not alone with this feeling and I wanted to share with others why there is a discrepancy. Hopefully the new drugs make a difference. Still hoping for a cure.