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White Matter Disease
I am a 65 year old woman. I passed out during covid and ended up on the floor in my bathroom unable to move my legs. I laid there for almost 15 hours and finally I was able to slowly crawl to reach my phone. I went to the hospital and they did many tests to try and determine why I fainted and why I was paralyzed. On the MRI they noticed I had white matter in my brain. My neurologist did many labs and ordered a spinal tap. After 3 attempts, they could not get out enough fluid making the spinal tap unsuccessful. The impression on the MRI said "nonspecific T2 FLAIR hyper intense white matter disease". Differential considerations to include chronic ischemic microvascular disease vs vasculopathic/inflammatory process or demyelination. I did some research and I think I would benefit to see a neuroradiologist. My neurologist is not able to determine the cause of these lesions so I think my next step is to go to Mayo in Rochester, MN (I live in Minnesota) and try and find a neuroradiologist there. Has anyone been diagnosed with white matter disease and what was your next step? Some of what I read on line was pretty darn scary.
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No further treatment was suggested by primary care provider. Just that this is not causing the vertigo and to watch my blood pressure and cholesterol.
No one has provided me any treatment. That's why I didn't think it was a big deal. I just knew it made it harder to "fight off the darkness" of my depression & anxiety disorder, per the neurologist, which has made my life much more difficult, and even estranged me from my only child. Another thing that I think might be unusual [?] is that I think I was still in my 50's when I was diagnosed. I think of it as an "old age" thing [I am 77 yo now], but I think I read that, as an aging symptom, it usually shows up over 60? You see, I honestly don't know much of anything, just bits and pieces about this. Someone said that I should get a new neurologist for my neurological stuff that is outside of the body movement, but in my experience, it is very difficult anymore to find a Dr who cares and will take charge to find something out! 🥲
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2 ReactionsHave you been to Mayo? The doctors there take charge and they do care.
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1 Reactionmitfit: Yes, I am a patient at Mayo, but my experience has been a little different from yours. Not all doctors take charge and care. I saw a neurological specialist for an involuntary body movement. Do you see a Mayo neurologist that you would refer? I would certainly appreciate it.
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@pkh3381 From what you’ve shared this seems like something to talk with your doctor about. You wrote that you haven’t seen a neurologist for awhile. Was it a neurologist who first diagnosed you with the Small Vessel Ischemic White Matter Disease? We aren’t medical professionals on Mayo Clinic Connect but I can share what I know about treatment for this. High blood pressure and high cholesterol can contribute to ischemia and so many patients are advised to take medications. These include medications to lower blood pressure and to bring cholesterol under better control. In addition, lifestyle changes are recommended such as changes in diet and exercise. Are you taking any medications for blood pressure or cholesterol?
I'm sorry to hear this. No, I do not see a neurologist at Mayo, but have found my main physician to be really caring and helpful.
Goodie, I am writing because as I read your answers I realized, many of us are dealing with the same mishmash of problems. I have the sudden falling asleep in the middle of a conversation, dropping the book or the email I was reading. I never know when, Inhave no warning. I am 81 years old. I have had Parkinson’s for 10 years, my feet feel like lead, I fall into walls. In addition I had a subdural hematoma and crainiotomy two years ago! I came out of that with no problems other than what I had before. We have moved into a retirement home as my husband had throat cancer! I have terrible balance problems. I have been diagnosed with congestive heart failure, I see a movement specialist neurologist! My primary care doc s not concerned, no one wants to it this all together, I get lung still of clots for no reason,it was an Oncologist who found this while he was trying to come up with a reason for the pulmonary embolisms. I see him again in two months, the neurologist in 2 months and the cardiologist in 3 months, I have not had an mri! What do you suggest I do? Is dementia inevitable? My father had something like dementia. My mother died of cancer when’s I was small! I have had breast cancer twice, ovarian cancer and melanoma once. I was hit by a Mack truck pulling a 70 foot modular home! I hav had 3 major back southern, my neck is bone fused, my back rods and screws from l-1 to s-2! Please tell me what you are doing about the small vessel ischemia white matter disease!
Goodie
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1 ReactionI hate to be discouraging, but I have ischemic white matter brain disease and the neurologist has never done anything about it!
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Yes, I am on medication for hypertension and cholesterol.
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I am 53 yrs old and was diagnosed with Mild Periventricular and Subcortical Chronic White Matter Disease yesterday. I too have no clue what to do from here and am scared from things I have read online.
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