Neuropathy Diagnoses: A Personal Story

Today's post from neuropathystory.wordpress.com (see link below) is another chapter in the long-running neuropathy story of one patient in Colorado. It centers on the difficulties people have getting the right diagnosis and how meeting the right specialist at the right time can make things so much simpler. Knowing what you have and where you stand is an enormous relief for most neuropathy patients, even if the treatment outlook is not so optimistic or clear-cut. This person's experiences will resonate with many readers.

Living With Neuropathy The Journey of one PNer
P L Gerrard July 2013

Snow in Nashville

One of the things I learned after moving from Colorado to the South is that when it snows no one goes anywhere. Most times it’s a blessing, as I have the road to myself. Other times it can be infuriating. I have driven from Knoxville to Columbia in near white-out conditions only to arrive in Columbia and find everything shut down (even McDonalds) and my meeting cancelled. Here I had just made a 240 mile drive through snow, but the other meeting participants wouldn’t even drive 10 miles across town.

Snow in Nashville the morning of my Rheumatologist appointment was one of the times snow was a blessing. My appointment was at 8:00 and I was told to arrive at 7:30 to complete paperwork. While I completed the paperwork, sitting near the reception desk, I heard call after call come in to cancel appointments – no one goes anywhere when it snows.

Because there were so many cancellations, the Rheumatologist was able to spend a great deal of time with me. She was a fellow, and after her initial examination, she came back with the supervising rheumatologist. They went briefly over my examination, and then asked if anyone had ever suggested MS to me. They definitely believed my description of the pain was neurology-related, and I had made the comment that some mornings just taking a hot shower was exhausting. Evidently that can be one of the symptoms of MS.

With that question hanging over me, I was not going to wait another 3-4 months to get in with yet another neurologist. Instead I asked if the snow may have had the same affect on appointments in the Neurology Clinic at Vanderbilt, and if it would be possible for me to see a neurologist that day. They made a phone call to the Neurology Clinic, and Yes!! There was an appointment open in two hours.

Now, Vanderbilt is a huge complex, and just getting from the parking garage to the clinic itself is difficult for someone with constant pain in their feet. So, rather than attempt the walk back to the garage, only to return again, I settled in their food court with a magazine and waited for my appointment time.
My appointment was with Dr. G, head of the Neurology Clinic, and a truly caring and compassionate soul. After a thorough examination, he announced that I did not have MS, but was suffering from Small Fiber Neuropathy (SFN). My initial reaction was a huge let-down. After all, one neurologist had already conducted an NCS that was negative for neuropathy. But then Dr. G explained that an NCS is only truly effective for diagnosing LARGE fiber Neuropathy, and negative results are common with the Small Fiber variety. What I did have that is consistent with Small Fiber Neuropathy was an absence of reflexes in my ankles.

There are tests, like a painful skin biopsy, that can confirm small fiber neuropathy, but he felt confident in the diagnosis, based on the physical exam he performed, and believed it best to start me on medication and see if there was an improvement in my pain level. He spent about 20 minutes explaining neuropathy in general and small fiber specifically, and gave me several handouts that I could read later. Some of the things I remember he told me are:

- Neuropathy is not in and of itself a disease. It is a condition that is brought on by an underlying cause. The most common underlying cause of neuropathy is diabetes.

- The most common underlying causes of SFN are auto-immune diseases and cancer. But, in most cases it is idiopathic (no known cause).

- Neuropathy cannot be treated. It can be improved if the underlying cause is found and treated.

- Neuropathy can be progressive and irreversible. It will progress until the underlying cause is found and treated. Depending on the underlying cause the damage may be irreversible.

- Neuropathic pain cannot be treated with typical pain medications, because the pain is ghost or phantom pain. Think of people who continue to feel pain in a limb after it has been amputated. So, the object is to trick the brain into not “feeling” pain from the damaged/missing nerves.

- The most commonly-used medications for tricking the brain are anticonvulsants.

I had already been tested for diabetes, and some auto-immune diseases, but he ran more blood tests, and gave me a list of cancer screenings I should take to Doctor K to have scheduled. He also advised me to have the screenings repeated every 2 years, because it is not uncommon for either an auto-immune disease or cancer to present itself within 2 to 3 years of an SFN diagnosis.

All tests came back negative, so my SFN was now considered idiopathic. The only thing certain was that until an underlying cause was found it would be progressive, and most likely irreversible.

http://neuropathystory.wordpress.com/my-story/snow-in-nashville/