Latest questions
If you're looking for something specific, please use your internet browser's page search facility (usually in the top right hand corner of your screen) to search particular keywords or alternatively, browse down the page to learn more about how Superficial Siderosis can affect everyday life and what can be done to help. If you'd like to broaden your search, you may find what you're looking for on another part of the Silent Bleed site - please use the search box in the header above.
Hot off the press - you'll find the latest from Dr Levy here. After a while, these get archived, so have 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 sometimes edit your questions to make them easier for others to read and we'll take out any personal references or names before posting them here. You never know, your question might help someone else too.
We usually send questions to Dr Levy in batches of ten, so it may take some time for your comments to appear here and please make sure your questions refer to Superficial Siderosis, treatments and symptoms only. Of course, always refer to your own physician in the first case.
We're really grateful that the expert has been working with us since 2015, and we've built up quite an archive over the past few years. With a little sifting you should find the answer you're looking for. However, we know we haven't covered everything, so if there's something else you need to know, please contact us - we'd be happy to forward your question. It's part of what we do.
Part of our Dr Levy Q&A pages
Q: Could this improve the efficacy of Ferriprox? https://neurosciencenews.com/nanoparticle-bbb-17515/...
A: The technology in this article is describing a lipid nanoparticle that can transport its contents to the brain. This might be useful for getting a new or better iron chelator in to the brain. Ferriprox is itself a lipid particle so it has no trouble getting into the brain. Within seven minutes of ingestion, Ferriprox is already in the brain. The difficulty lies in prying the iron molecules off ferritin proteins so they could be chelated by the Ferriprox.
Q: Is Alzheimer's a form of dementia created by SS? What causes dementia in SS patients?
A:No. Alzheimer’s is a dementing illness caused by a very different mechanism.
Q: Vagus Nerve. Excessive sweating. Someone mentioned that this could be due to damage to the vagus nerve. Have you come across this as a symptom of SS? Could the vagus nerve also be the cause of acid reflux? I suffer from both! Is there a connection? Many thanks.
A: The vagus nerve is generally spared in superficial siderosis. Only 1-2 mm of this nerve is exposed to the spinal fluid and the iron particles within it. However, there are other nerves in the spinal cord that assist with autonomic function including swallowing, blood vessel control, sweating, etc. Dysfunction of these spinal cord nerves can be due to SS.
Q: New trial of antioxidant. I was diagnosed with SS 2.5years ago confirmed by 3 MRI's. If possible I wish very much to be included in the antioxidant group for testing or find out more about this. I live in Canada. My neurologist has offered me nothing not even hope. He knows nothing about SS, never had a patient and does not seem interested. Just live your life! I would also like very much to try the drug for the iron. My GP retired and I feel I have no one in my corner.
A: Canada is where Ferriprox is made. And it is approved there, as well as antioxidants that may be protective. If your doctor is not helpful, perhaps seek out a vascular neurologist who is more intersested in this condition.
Q: Pain in both shoulders down to my elbows has been going on since mid December I have only had two days without pain. Could this be neuropathy caused by SS. Or am I looking at rheumatoid arthritis?
A: Hard to tell. There can be many reasons for pain in the shoulders, arm and elbows. It could be neuropathy due to SS, but I would rule out the easily reversible causes first.