Treatment Journey

Quarterly Neurology Follow-Up

Quarterly Neurology Follow-Up

The New Normal

By the time we went to our quarterly neurology follow-up we had a pretty good list of questions. The cholesterol medication was a big one. What kinds of exercises could we safely add to the walking? Did we need to see a Neuroopthamoligist instead of our ophthalmologist? What alternatives, besides prescription medications, were there for the neuropathy pain, body, and joint pain? The hand and trigger finger problems had become extreme. Some days it is impossible to hold a fork or use a knife. Was this even SS related? What decision had the doctor come to in regards to searching for an active bleed?

The Statin Question

Our neurologist agreed pretty quickly we had a valid concern about the ten-year history of statin use. She reviewed cardiac health history. His parents had both been treated long-term for high cholesterol. Gary’s number had a history of being high at times; it was not at a level now that would suggest he was in a high-risk category. Blood pressure was stable. Plus there was the bonus of the chelation diet regimen. We avoid all red and organ meat five days a week and load up on the weekends. Try to eat grass fed or home grown meats as often as possible. Raise free range eggs, and avoid most processed foods, so there was a good chance cholesterol would level out on its own.

The neurologist discontinued his cholesterol medication at once. We were asked to schedule an appointment with our PCP to have a baseline cholesterol level recorded. We would then return to our neurologist in November to re-check the cholesterol and complete another in-office cognitive test to see if there was any improvement in his MCI. The neurologist didn’t think the hand and finger problems were SS related. We were referred to a rheumatologist who is familiar with Traditional Chinese Medicine and Myofascial Trigger Point release, besides the conventional rheumatology treatments. Our appointment with Dr. Chou is now scheduled for October. But our doctor said she wouldn’t be at all surprised if Gary had a significant improvement in his body and joint pain simply from getting the statins out of his system.

The neuropathy is still troublesome. We were told to continue using the Corydalis Relaxe™ and add 500 units of  Alpha Lipoic Acid daily. If there has been no improvement or the neuropathy gets worse we will have to look into alternate medications in November.

What About the Vision?

Our ophthalmologist had asked a scan of the optic nerve be included in the MRI done last February. The vision problems were getting worse, and no one was really sure where was the problem. Our neurologist told us to keep our August follow-up appointment with our ophthalmologist. We now know the vision problem is Nystagmus, SS related, and there are not any treatment options. His neurological exam shows a lesion in the PPRF. His eyes no longer track together when moving horizontally. One will move, and the other has to catch up. He also has trouble reading, judging distances and sees phantom images in his peripheral vision on occasion. A few folks in the Facebook group mention using prism lenses for their double vision problem, but Gary hasn’t been troubled so far by double vision.

Born To Be Wild

Ready for the Toys for Tots run
Ready for the Toys for Tots run

Get Your Motor Running, Head out on the highway

Gary loves motorcycles. He waited a long time to buy one. Jobs, kids, life. The things you want are often put on hold for the greater good. When you combine vision and balance problems, it doesn’t make a safe combination for driving let alone riding a motorcycle. It was a sad day when we realized the motorcycle had to go. Just one more thing added to the SS disappointment list. We had bought new bicycles last year but riding that was impossible so during our hunt for acceptable exercises he came across an advertisement for an adult tricycle.

His New Ride

Our doctor was thrilled with the choice. Three tires would provide much-needed stability plus he could build up his cardiac and lower body strength. The trips are very short right now, just a few driveways down the road, but we hope over time he will be able to build up some stamina. Gary had wanted to start lifting small weights for his upper body, but his neurologist wants no lifting of any weight greater than 10 lbs so we’ll stick to small dumbells.

Our neurologist does not know for sure, but she is convinced from old and new scans there is still an active bleed into the CNS that can’t be repaired surgically. The plan for now is to wait two years, let the chelation therapy try to work on the deposits, and then perform a lumbar puncture. I think the hope is now since outside work is not an issue the pseudo-menengeocil might have time to self-heal somewhat.

Wait and search. It’s our new normal.

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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

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  1. If Gary gets a Gamin Cycle Computer or the STRAVA iPhone App and joins STRAVA we could set up an SS sufferers club and see how many SS cyclists there are world wide.

    1. I’m afraid Gary no longer is able to go any distance beyond a quarter of a mile now. I know he would love to build back up his endurance. Do you think he would get some benefit from a stationary bike? I know his original neurologist suggested he use a recombinant tricycle to relieve any strain on his neck.

  2. I hope your husband has great succses and that you keep sharing. I have problems with grains so I’m ooking forward to your recipes.I don’t know if this will help, but if you like mushrooms, I’ve found that I don’t miss the rice with a stir fry if I go heavy on well-cooked mushrooms.

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