Part of our Dr. Levy Q&A pages
Hot off the press - you'll find the latest from Dr. Levy here. After a while, these are archived, so take a look through the other headings if you need to find out about something specific. If your question still remains unanswered, please get in touch, and we'll pass it on for you.
We may occasionally edit your questions to enhance readability for others, and we will remove any personal references or names before posting them here. Who knows, your question might even assist someone else.
We typically send questions to Dr. Levy in batches of ten, so it may take some time for your comments to appear here. Please ensure that your questions refer only to Superficial Siderosis, its treatments, and symptoms. Naturally, always consult your physician in the first instance.
We're truly thankful that the expert has been collaborating with us since 2015, and we've accumulated a substantial archive over the past few years. With a bit of careful searching, you should find the answer you're seeking. However, we acknowledge that we may not have addressed every query, so if there's anything else you need to know, please don't hesitate to get in touch - we'd be delighted to assist you further. It's all part of our service.
If you're looking for something specific, please use your internet browser's page search feature (usually located in the top right-hand corner of your screen) to search for particular keywords. Alternatively, you can scroll down the page to learn more about how Superficial Siderosis can impact everyday life and discover what can be done to help. If you wish to broaden your search, you may find relevant information on another part of the Silent Bleed site. Please use the search box in the header above.
Latest Questions and answers
SS symptom?
MESSAGE:
Can SS cause tingling all over the body? Or a metallic taste in the mouth?
SS can do anything neurological in theory, depending on where the iron toxicity in the brain is. However, most of my patients with SS have not described tingling all over the body or a metallic taste in the mouth. These symptoms sound like medication reactions perhaps to drugs like Paxlovid (COVID antiviral).
Iron overload
MESSAGE:
I saw in a CSI crime investigation TV series episode 14 season 14 that white lines on fingernails can indicate Iron overload (mees’ lines), could this be a sign of superficial Siderosis development?
Mee’s lines are due to heavy metal toxicity, but that does not include iron. Iron toxicity can show up in other ways in nails. One is called koilonychia, which is thinning and curving of the nails. And, in extreme overload, the nails can look blue-ish.
Very importantly though, these manifestations of iron overload in nails does NOT occur in superficial siderosis. In superficial siderosis, there is only iron overload on the surface of the brain and nowhere else.
Hemosiderin
MESSAGE:
I have been taking deferiprone for almost 2 years.
I understand iron is lodged within the hemosiderin.
Would it be feasible to medicate for a dissolution of hemosiderin thereby freeing up iron for faster chelation ?
Great question. Iron is trapped on the surface of the brain because it is bound to ferritin. Ferritin is a protein made by brain cells to quench free iron and keep it from causing damage. The result of iron binding to ferritin is called hemosiderin.
Once iron binds to ferritin, it becomes insoluble and does not recycle back into the veins of the body. It becomes trapped in the spinal fluid and because it’s sticky, it will stick on to the surface of the brain and spinal cord. For the most part, hemosiderin is harmless because the ferritin holds on to the iron molecules very tightly. Over the years though, hemosiderin will eventually release the iron molecules once in a while. The iron molecules diffuse into the brain tissue and cause oxidative damage, just like rust on a car bumper.
Ferriprox (deferiprone) cannot pull iron from the ferritin molecule. It can only bind free iron. So, after you take deferiprone, it waits in the spinal fluid for the iron molecules to be released. Once they are, the product of iron + deferiprone remains soluble and can be recycled back to the body.
Your question is, how can the hemosiderin be dissolved so that the deferiprone can more quickly remove the iron deposits? This is something we have been thinking about for a long time. Vitamin C appears to weaken the bond between iron and ferritin but vitamin C has lot of other effects that may be harmful in iron overload conditions. For example, in iron overload diseases of the heart, vitamin C causes more heart damage. We would love to find a way to accelerate the chelation process, in a safe way.
New research PoMS
MESSAGE:
Having just read The Brain’s Way of healing and the good results of the PoNS machine (Portable Neuromodulation Stimulator) for MS, Parkinson or stroke patients I was wondering if any testing is possible for SS patients? Research is being done by Helius Medical and the PoNS device is an authorized medical device in Canada
I don’t have any experience using the PONS system in SS (or MS or related conditions). I have read about it online but I’m not sure if it would work. It looks harmless to try though.
The last stage
MESSAGE:
Every article that I have read about SS notes that it is a debilitating condition but not fatal. However, I have recently read a few posts where people have mentioned loved ones dying from SS and so I wasn't sure whether they meant they succumbed to SS or they died from another condition made worse by SS. If people do die from SS, what is the most likely mechanism for causing death? This might help me to keep an eye out for particular symptoms...
SS is not fatal per se. But it can be very disabling. If your SS causes balance problems that leads to a fatal fall down the stairs, it’s the fall that is the immediate cause of death and SS is secondary. In the same way, SS can cause disabling symptoms that lead to death. For example, sometimes SS can interfere with swallowing and that may lead to aspiration pneumonia. Another example is SS limiting mobility and that may lead to deconditioning, blood clots, etc.
There is not one thing that leads to death in people with SS. The most common causes of death in my SS patients have been cancer, heart attacks and strokes, just like everyone else.
MESSAGE:
Hello, I am a long time user of Warfarin. 22 years. I have had 2 pulmonary embolisms, 1998 & 2008. I had 2 brain bleeds in 2017. I also have 2 mutations that make me 6 to 8 times more likely to have clots. My doctors want me to switch to Eliquis. I plan to switch in a few weeks. I just wanted to know what Dr. Levy thinks? I have been to Cooper, Jefferson and Penn. Not one neurologist from the three ever had a patient with SS. I have an appointment at Johns Hopkins March 29th. Hopefully I can some answers and treatment. >> I wrote to you separately in an email. But to give some general advice to the community, I do not think there is much difference in the safety of different blood thinners in SS. Warfarin vs Eloquis and the others are all probably the same. They all make it more likely to bleed. But just like all medications, the risks need to be weighed against the benefit. For some people, stopping blood thinners will lead to blood clots and death; therefore, even if it worsens the SS, you have to continue taking them.
MESSAGE:
My 81-year-old mother has been diagnosed with superficial siderosis, with deposits found on her brainstem, cerebellum, and spinal cord. She has undergone a series of operations over the years for cervical spine stenosis, including the insertion of rods and a cage to stabilise her. We had always attributed her symptoms to arthritis, but it appears that her balance issues, pain, neuropathy, and deafness could be attributed to this condition.
In addition to this problem, my mother also has antiphospholipid syndrome (an autoimmune disorder that causes blood clots) and has been on warfarin for over 20 years. She has been falling a lot, and her doctors have always told her to go to the emergency room if she hits her head because of the warfarin. Every time this happens, we go, and she has a CT scan that has never shown the siderosis. It is my understanding that an MRI will pick it up - NOT a CT scan.
Considering that she has a history of siderosis plus being on a blood thinner, if she falls and hits her head, should she be getting a CT scan or MRI in the emergency room? Will a fall impact this condition in any way?
>> A CT scan is better for visualising fresh blood from a trauma, and it's super fast. So if your mum falls and bleeds in her head somewhere, a CT scan is what you want to get.
A CT scan won’t visualise superficial siderosis, which comprises old blood products deposited on the surface of the brain. Only an MRI can detect this. Superficial siderosis evolves slowly and can be monitored annually or biennially. There's no need for an MRI after falls.