I am undergoing testing for MS due to a couple of brain MRIs that show multiple mm size lesions in the white matter, as well as some neurological symptoms and a possible lesion in my thoracic spine. I will be seeing an MS Specialist in a couple of weeks, and hope to find some answers there.
My question now is, my primary care doctor is convinced that I have something called white matter disease. All the googling I do on this does not give me any information that matches my situation. I have no predisposing factors for vasculitis, no diabetes, high blood pressure, high cholesterol; none of that.
Is there new information somewhere on White Matter Disease that is happening to younger (46) people? Is it something that leads to dementia?
I should just forget this until I see my new MS specialist, but I am very curious; my PCP seems so sure. She says that she has some patients that have been recently diagnosed with it, that there is new information about it affecting younger people, etc. She didn't say vanishing white matter disease. Googling can be confusing; does anyone have a clearer answer to this question?
Hi Kathy, You may have already read this but here is some info........it sounds to me like a wastebasket dx for many doctors if they don't know. Because what you are talikng about in your post sounds like you are describing "ischemic changes" They also use that dx frequently EVEN THOUGH you do not fit the criteria for that dx. Read this and let me know your thoughts..........
White matter disease
(WMD). There are many disorders which can involve the cerebral white matter, either exclusively or in combination with grey matter changes. These include inborn errors of metabolism, exogenous toxins, autoimmune disease, demyelination, radiation and chemotherapy effects. When identifying a white matter disorder it is essential that the findings are placed in context with clinical features and the results of other tests, such as biochemical, genetic or haematological. Spasticity, hyperreflexia and ataxia are clinical features suggestive of WMD. Many of the conditions resulting in white matter disease appear similar in the late stages and thus if differentiation is to be made, scans must be performed early. MRI is the best imaging modality for demonstrating WMD (Fig.1), with diffusion imaging and spectroscopy occasionally being helpful.
Diseases mainly affecting white matter produce low attenuation on CT and increased signal on T2-weighted MR images. Ventricular dilatation is a common feature. The distribution and symmetry of signal changes is helpful for identifying the underlying disease process. In a child with macrocephaly bilateral, symmetrical, frontal white matter involvement of the subcortical region suggests Alexanders disease. Diffuse, subcortical involvement suggests Canavans disease. Thalamic involvement with deep white matter changes should suggest Krabbes disease. Lack of myelination rather than destruction is seen in Pelizaeus Merzbacher disease.
Nonspecific white matter patterns are seen in the end stage of any WMD, demyelinating, collagen, vascular disorders and metabolic conditions. Occasionally, congenital infections can produce white matter changes. See leukodystrophy
What symptoms do you have?
White matter disease includes autoimmune diseases, demyelinating diseases like MS, encephalomyelitis, and primary white matter diseases like leukodystrophies.
Leukodystrophies are characterized by degeneration of white matter in the brain.
Leukodystrophies are a result of genetic defect or most of them are inherited. Almost all leukodystrophies manifest in childhood.
Hope this helps! Let me know if you need more information. Take care!
My symptoms include acute onset tremors with intense occipital headache at age 45, dizziness, ataxia, parasthesias, worsening vision without clear sign of ON, blurring and/or jittery vision, floaters in both eyes (new with tremors and then after LP), exteme fatigue, increasing heat intolerance, pain that wraps around my rib cage after starting just under the right front side of ribcage.
In April I had sharp pains in my bladder, then develped a buzzing/tingling sensation between my legs, at one point wrapping around my left thigh for a few hours, that resolved after several days. I had a urinalysis and urine culture done early in this event, and they were clear.
Some of the parasthesias include a cold burning sensation on the outside of my right hand, an icy sensation on the top of my left foot, burning pain in my lower right quadrant of my abdomen.
During the worst of my symptoms and fatigue, I had trouble finding words while speaking, and remembering how to spell some words while typing. My short-term memory was really poor.
I also have a history of cold intolerance, with tachycardia/ arrhythmia and severe cramping in cold limbs.
My PCP talks about white matter disease as if it is capitalized, and is something that used to be only seen in older people.
I appreciate your attempt to clear this up for me. It is difficult to go through many test and have no clear answer. I'm hoping the MS Specialist I will be seeing will be able to help me find some clear answers.
Thanks for the info. I've seen similar stuff, which really covers a lot. My PCP talks about White Matter Disease like it is one disease that used to only be found in the older population, and that she is sure that is what I have. I just couldn't tell her that white matter disease includes MS plus a whole lot more! She's really a caring, thorough doctor, but Internal Medicine doctors just can't cover everything.
I was just unlucky enough to have two neurologists who thought they ruled out MS and kicked me to the curb, without looking for other answers. I've seen your screen name on the MS forum, haven't I ? Then you know that it isn't as easy as that to rule out MS because of a negative LP or non textbook lesions.
I have been dealing with a lot of fatigue and pain issues, and haven't kept up with everyone on the Forums. I'm trying to update my Timeline of symptoms for my appointment with the MS Specialist. I'll post it on my MedHelp Page journal, if you get bored and want to check it out. :o) I appreciate your input, and will check out some of the white matter disease stuff that I may have missed, to see if it fits with my symptoms.
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