Systemic Scleroderma and White Brain Matter Disease

Is anyone dealing with systemic scleroderma and white brain matter disease? There is a lot of information available about PAH, etc...but little in the U.S. regarding issues of lack of oxygen, poor circulation, and impact to the brain. Thank you.

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Dear Advocateformom,

I have CREST/Scleroderma. I have never heard of white matter disease. Can you explain it to me, and how it diagnosed? Does it mean we have more or less white matter in our brains with this disease? ABout 10 years ago when I began to have the beginning of symptoms I had an MRI of my brain because of my dizziness. The neurologists report showed everything normal but there was a mention on more than usual white matter. for my age. It showed as being unsignifigant. Now I am wondering if something is going on in my brain that I am unaware of. I will appreciate any information you have on this. I look forward to hearing from you.

I-Care

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Very interesting topic that is not discussed very much. I thought the brain was safe from sclero since it doesn't have collagen. Sclero.org had numerous research studies noted on the impact of systemic scleroderma brain/cognitive function so apparently it's not. It is something we should all know about so thanks for posting!

More info below:
http://sclero.org/medical/symptoms/brain/a-to-z.html

"Systemic Scleroderma Brain Involvement
In a small study of 30 Russian patients presented at EULAR 2004, the systemic forms of scleroderma were associated with brain (cerebral) problems, such as chronic insufficiency of brain circulation. This research is preliminary and would need to be validated by larger studies before symptoms such as cognitive impairment, migraines and vertigo would be included in the diagnosis, evaluation, or classification of systemic scleroderma.


Cerebral Vasculopathy Is Associated with Severe Vascular Manifestations in Systemic Sclerosis. Severe cerebral vasculopathy is associated with severe vascular manifestations in SSc patients. SSc patients with severe vascular complications should undergo neuroradiological imaging assessment of brain involvement. Benjamin Terrier. The Journal of Rheumatology. vol. 36 no. 7 1486-1494. July 2009. (Also see: Vascular Involvement)


Proton Magnetic Resonance Spectroscopy Reveals Central Neuroaxonal Impairment in Systemic Sclerosis. Involvement of the central nervous system (CNS) in systemic sclerosis (SSc) is rare. Evidence of neuroaxonal damage strongly suggests the existence of CNS involvement in SSc. J. Rheumatol 2006 March;33:546–51.


White matter hyperintensities on brain magnetic resonance in systemic sclerosis. White matter hyperintensities are more common in patients with SSc than in a CG (control group). These findings might be related to obliterative microvascular processes due to the disease. Early brain involvement in patients with SSc may occur. PubMed. Ann Rheum Dis. 2005 May;64(5):777-9.


Ischaemic stroke in progressive systemic sclerosis. We have documented a cerebral infarct in a PSS patient. In our opinion, the ischaemic stroke was caused by a localised autoimmune angiopathy. PubMed. Neurol Sci. 2004 Oct;25(4):230-233.


Hippocampal damage in mouse and human forms of systemic autoimmune disease. Taken together, these results suggest that systemic autoimmunity induces significant hippocampal damage, which may underlie affective and cognitive deficits in NP-SLE. PubMed. Hippocampus. 2004;14(5):649-61. (Also see: Lupus)


Cerebral vascular pathology in systemic sclerosis. The data obtained suggest that extra- and intracranial blood flow pathology in SS may, to a large extent, determine both organic brain lesion development in general and the genesis of many symptoms (headaches, vestibular disorders, etc). PubMed. Zh Nevrol Psikhiatr Im S S Korsakova. 2004;104(4):19-23.

Incidence of Cognitive Impairment in Systemic Sclerosis. Among the 17 patients, 13 had evidence for a cognitive impairment such as difficulties in performing two different cognitive tasks simultaneously, drawing elaboration, and memory impairment. Ten (59%) patients had a documented defect in long term memory research strategy, whereas 3 (17%) presented with short term defect. Only 3 of the 13 SSc patients who had cognitive impairment also had evidence for depression, as assessed by the MINI. C. Moroni. FRI0338 EULAR 2004.
Vestibular Balance Disorders: Vertigo, Motion Sickness, and Dizziness MedicineNet.

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I'm interested in this subject because I have a lot of memory loss, both long and short term and also difficulty in concentrating and have been wondering if it was connected with the scleroderma. Does anyone else have these problems? It is not due to medications because I am not taking any at the moment.

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I have quite a bit of memory loss too ..... I have fibro that gives me brainfog occasionally and I am now 60 ....... mostly short term memory loss! Looks like it is time for lists and notes ....if I remember

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I have systemic sclero. I was diagnosed with White matter ischemia of he brain about 4 years ago. I also have PAH, fibro, sjogrens, etc. Back in the day I had an almost photographic memory, now I can't remember to get a pot off the stove before it burns up. My daughter will talk about things we did when she was a little girl and I have no memory of any of it. My long term and short term are so affected. I am only 56 so I don't think I am getting alzheimers. My neurologist said this would happen as my disease advanced.

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Yes, I alo have significant issues with my short term memory. I had a cognitive assessment done at the recommendation of my rheumy due to the significance that these issues were causing me and the fact that I am only 43. The assessment revealed above average cognitive ability during the first hour of the eval., however, when fatigue set in my mental capacity fell to below average including memeory and other executive functions. I also had a brain MRI which looked normal, however, my cognitive ability definitely seems impaired on a daily basis. It really stinks but I am coping (lots of sticky notes around the house).

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I've had problems over the last few years, but like all the other scleroderma symptoms, the brain function issues are reversing with ap. It has been exceedingly difficult for my husband, particularly, since when we met I was a very sharp thinker and contributor to my job -- where we met. There are times in the last year when I could not finish a sentence or spell one syllable words. My life has been organized by sticky notes as well, although I don't need them now. The last six months of recovery have been really exciting, because I am no longer sitting passively listening to conversations and unable to gather my thoughts to join in the topic. I can read and retain again. I am able to write again. My project organizing skills haven't come back yet, though. My mother-in-law says they didn't realize that I was incapacitated mentally during this period, but now that I'm coming out of it, she and my sisters-in-law understand that I have been very, very sick.

Weeks prior to getting sick five years ago, I had spoken to the Director of the PAOI at the UCB Graduate Theological Union about starting grad school. I may make it, yet, just a little later than I'd planned.

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What can we do to slow down the progression of brain disease??

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I have had scleroderma for many years, and as the disease progressed so did my brain"fog" until I finally had to take early retirement from my work. What has helped is going on the antibiotic protocol, and after one year of minocycline, I noticed a definite improvement. The second thing that helped is hyperbaric oxygen chamber treatments. The oxygen penetrates tissues and aids in healing, improving circulation. Some facilities are using the hyperbaric oxygen chambers for treatment of strokes, brain injuries, and burns. The only disadvantage is the expense since HMOs usually won't pay.

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thank u nancy for sharing ur info i have never heard of that treatment i will ask my lung doc 2morr if he has any info on it..i am learning so many diff options from this site..thank u all for sharing all info is wonderful to have..God Bless all

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yes I do also but doctors keep telling is due to medications

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I know what you mean I have noticed lately that I have trouble concentrating and also trouble with memory loss. I aasked my Rheumy yesterday and she said it was not the SSC causing it maybe due to my lung functions or lack of rest sice i am having trouble sleeping.

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Ditto on just about everything. White brain matter on MRI - Memory loss and at times, problems getting my thoughts out (like when watching Jeopardy). Hope all have a better day tomorrow!

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I insisted that I be on oxygen at night, It makes such a difference,. ask your doctor about it.

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I insisted that I be on oxygen at night, It makes such a difference,. ask your doctor about it.

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