Scleroderma and severe iron in brain

Posted by butterflylan17 @butterflylan17, Thu, Apr 18 8:03pm

Hi, the severe iron is in my basal ganglia, substantia nigra, and I think the prefrontal cortex, I can’t remember right now. Its affecting my short term and working memory and CNS. I’m also ANA positive and see my Rheumatologist next week to discuss nucleolar positive results, which are indicative of scleroderma But I’m also concerned about MS. Im on pain every day and have burning in both legs, joints hurt, swelling fatigue, etc. This Leaves me with a feeling of unrest.
Has anyone else heard of this iron issue in the brain? Thanks.

Liked by lioness

HI @butterflylan17 and welcome to Connect. That must be so frustrating having this affect your memory, and having the MS give you constant pain.

I wanted to introduce you to fellow Connect members @johnbishop and @jenniferhunter as they may have some thoughts on this for you and may be able to offer you support.

I also wanted to share a link to the Brain & Nervous System group so that you can interact with other members there as well: https://connect.mayoclinic.org/group/brain-and-nerve-diseases/

I also thought this discussion on Multiple Sclerosis would be helpful: https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/?pg=1#chv4-comment-stream-header

Back to you @butterflylan17 have you been undergoing any treatments yet or will your meeting with your rheumatologist tell you how to proceed?

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Hello @butterflylan17, I would like to add my welcome to Connect along with @ethanmcconkey and other members. I had not heard of the issue of iron in the brain before but was able to find some information that may be helpful.

Neurodegeneration with Brain Iron Accumulation
https://www.nbiadisorders.org/about-nbia/overview-of-nbia-disorders

Neurodegeneration with Brain Iron Accumulation Information Page
https://www.ninds.nih.gov/Disorders/All-Disorders/Neurodegeneration-Brain-Iron-Accumulation-Information-Page

Has your care team or doctor suggested or started any treatments?

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Thanks @ethanmcconkey and @johnbishop , I will take a look at the Neurodegeneration brain iron links that you sent. I've visited the pages in the past but it's been awhile.

I had also tested positive for a gene related to hemachromatosis. It wasn't the PANK2 gene, but a different one which is also rare and hasn't been studied as much.

My thoughts are, if someone has hematomachrosis, it's in one of their organs, like the liver, kidney, etc and they have a pint of blood removed on a frequently scheduled basis or else the organ wont function properly and ultimately in non scientific terms just wont function?

So, with my brain, I saw a hematologist in 2013 and he did testing for the genetic mutation and discovered the gene mutation but my overall ferritin level was low in my body, not high. And the dr said he had never seen anything like it. And added that I will probably end up in a medical journal. Meanwhile…

My questions are can this iron be chelated from my brain? I feel that some of the docs I've seen really don't know the answers to some of my questions and its beyond their expertise, so I've been told "don't worry about it." Obviously. I'm concerned, especially when my MRI report said this is indicative of a neurodegenerative disease.

I'm just so physically tired from this stress and the symptoms of memory issues, fatigue, the pain in both legs, I don't know if its nerve and muscle related…my legs hurt so badly. I'm scheduled for a bone scan next week because I had breast cancer in 2013 and my oncologist wants to rule out metastasis to my bones.

Any thoughts you have are appreciated. Thank you for listening, I guess I'm feeling a little bummed out, lol. Have a great day!

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@butterflylan17

Thanks @ethanmcconkey and @johnbishop , I will take a look at the Neurodegeneration brain iron links that you sent. I've visited the pages in the past but it's been awhile.

I had also tested positive for a gene related to hemachromatosis. It wasn't the PANK2 gene, but a different one which is also rare and hasn't been studied as much.

My thoughts are, if someone has hematomachrosis, it's in one of their organs, like the liver, kidney, etc and they have a pint of blood removed on a frequently scheduled basis or else the organ wont function properly and ultimately in non scientific terms just wont function?

So, with my brain, I saw a hematologist in 2013 and he did testing for the genetic mutation and discovered the gene mutation but my overall ferritin level was low in my body, not high. And the dr said he had never seen anything like it. And added that I will probably end up in a medical journal. Meanwhile…

My questions are can this iron be chelated from my brain? I feel that some of the docs I've seen really don't know the answers to some of my questions and its beyond their expertise, so I've been told "don't worry about it." Obviously. I'm concerned, especially when my MRI report said this is indicative of a neurodegenerative disease.

I'm just so physically tired from this stress and the symptoms of memory issues, fatigue, the pain in both legs, I don't know if its nerve and muscle related…my legs hurt so badly. I'm scheduled for a bone scan next week because I had breast cancer in 2013 and my oncologist wants to rule out metastasis to my bones.

Any thoughts you have are appreciated. Thank you for listening, I guess I'm feeling a little bummed out, lol. Have a great day!

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Hi Butterfly.. Your post caught my eye especially I have family members with Scleroderma and I haven't known others with this.. I'm so sorry that you are having to deal with it, too.. My own autoimmune issues are different tho.. Erythromelalgia, Fibromyalgia, Neuropathy, and Diabetes Type 2 (recently diagnosed).. I can imagine that you are a "little bummed out", as you put it.. and I admire your effort to find some solutions and help.. I will be following your postings.. and am glad you found Mayo Connect.. I'm new here, too..

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