Unspecified white matter changes...

[pumpkincake]

I have looked for this information and not found much honestly. On MRI results I have significant unspecified white matter changes. I understand the rest of the results. Anyone have a clue on this one?

It seems so vague to me.

[sharonap]

Hi, after my most recent stroke (jan 2012) . MRI showed a change in white matter??

I was dx with sneddons syndrome due to having unspecified white matter changes, not 100% with dx waiting tio see new rheum. also have APS.

Keep us informed if you find out anything more.

thanks

[GinaD]

Sorry, no clue. Good luck.

[Stannington-lad]

HI, I have about 12 white lesions on my brain in which the consultant things that these are to do with my migraines and having sticky blood/APS.

Hope this helps.

[jetjetjet]

good morning - thru all my tseting done on my head the # of the white matter found increase in the # s, than they seemed to level off. i think the white matter is why the {the dc s] will go with a false dia. of m.s.- they are consistent with a.p.s. i have been told a # of times by 3 different nuero s . this is the way i understand it ------------------------------------ jet

[pumpkincake in reply to jetjetjet]

Thanks jet..

So seems like changes in white matter may look like MS as well as APS. Makes sense that the docs thought I have MS.

Hmmm.....I wonder then if this is the case if what is going on in the white matter has the same effects on us, as in the MS type symptoms in APS.

good information jet... glad you have doctors that give you information too!

Have a good day jet!

[jetjetjet in reply to pumpkincake]

hi cake - ive been hospialized a number of times for partial loss of eye site along with numbness and migraines, balance problems, every time i was there ,and was seen buy a new nuero , they would bring up the white matter and say they ruled out m.s.- i would say, i know i dont have m.s. i do have aps though- thats when i got the funny looks as ,what is that ???? i did get more of them for while and then , they stopped . i still have them ,but my new neuro doc says we will just moniter them yearly , unless a problem flares up again , which thank god hasnt, with the other symtoms of aps they should be able to make the distinction. you are in ohio- in N.H. you are legally able to have copies of any and all records free of charge, so long as a] its not for legal issues b ] the time line isnt to old- i get my records every month, which is usually thirty or so pages these consist of all appointments , inrs ,referals , talks between concord and dartmouth hospitals -which is to set my schedule for warfarin \ this is every 3 days ,so they pile up quick - if you read my reply to the records blog just awhile ago ,it explains it all as far as the way i do things . you really have to follow up on things ,its not uncommon to see a difference of opinions , but i like to know that there is so i can get it straightened out before it gets to far, i see 7 different doc s so i keep a close eye on them . some times my records are more up to date than the hospital im at . the good doc s dont seem to mind at all. it also lets them know you are proactive with your particular problems . ---------------- what do you think ?? let me know ----------jet

[haley]

I was diagnosed with APS about a year ago. That doctor said that the scattered high intensity white matter lesions are characteristic of APS. Previously, a neurologist said they were consistent with my history of migraines.

My APS antibodies have now disappeared though I have the same symptoms and my new diagnosis is transverse myelitis caused by a flu vaccine. Now I read that these same lesions are seem with the myelitis (inflammation of the spinal cord). Migraines, APS, TM all associated with each other....

[pumpkincake in reply to haley]

Hi haley,

Such a cross over of all these things is so confusing isnt it haley? Goodness Haley.. a flu vaccine brought on all of this for you! Sounds like you have been going through a game of hop-scotch with these different diagnoses jumping from here to there. Hang in there.

Have a wonderful day haley!

[Trixylarue]

My daughter has had MRI's which show white lesions on her brain. She has a strong history of migraines and chorea. Her APS seems to have "attacked her CNS, central nervous system. She graduated from college and laughingly blames the "white lesions" if she forgets something. Who knows???

[pumpkincake in reply to Trixylarue]

Hi trixy,

Thanks for the reply. I have had migraines for years but now they come and go. I see that many of us have the memory problems too. I think I will go along with your daughter on this one. It is probably so much better to be able to laugh it off instead of letting it frustrate us.

Looks like she if pretty lucky to have a momma who cares so much about her!!!

[jessielou]

Hi hon

Seems very likely that Aps is the culprit, from what I've read anyway. This sludgy blood has a lot to answer for doesn't it.

Hope today a better day for you.

Take care gentle hugs love sheena xxxx

[DianneinPA]

I'm not positive so of course your doctors answer is going to be the best and most accurate. But as a nurse as well as an aps patient, i can say that "white matter changes in the brain" can also refer to the beginnings of dementia which also is one of the unfortunate symptoms of APS.