Not MS but Leukoaraiosis causes?

[dittledittle]

I was diagnosed with Multiple Sclerosis for the past 4 years.  Doctor was thinking primary progressive.  I am a 52 yr. old female who also has Ankylosing Spondylitis and Ulcerative Colitis.  I just had my yearly MRI and now the neurologist is saying not MS but instead, the radiological terms are “non-specific micro-vascular change” or “leukoaraiosis”.  My symptoms have been leg weakness, balance problems, muscle spasms, short term memory difficulties, left eye with Optic Neuritis.  If I don't have MS then what could it be.  I do not have high blood pressure, diabetes or high cholesterol, no strokes or TIAs, and CADASIL (unlikely, no relatives with it).  What else causes these brain lesions.  Neurologist says I have too many lesions to be age related.  They are multiple small foci of bright FLAIR signal in the subcortical white matter of both hemispheres in a relatively symmetric distribution.  Thank you for your help.

[sllowe]

Dnuzzo -
Sorry, you happened upon an old post. No, Leukoaraiosis is absolutely not MS, then are not one in the same. MS disease modifiers are not all immune suppressants - most are immune modulators and they have nothing to do with venous insufficiency.

Not sure where you are getting your information from, but we pride ourselves in reporting facts, of course we share plenty of opinions as well.

Since there are so many MSers that are regulars on our forum, and those who just pop on and read, I could not let your statement be considered fact as stated.

All -
There is no scientific fact in what is posted regarding the disease from the last post, or the disease therapy, fwiw.
-Shell

[dnuzzo]

Leukoaraiosis is multiple sclerosis. They are one in the same. Both of venous drainage problems. Don't be fooled into taking MS immune suppressant meds. What a big mistake that was for me. They increase calcification of vessels and worsen venous insufficiency. Make sure you're getting plenty of vitamin k2 in your diet.

[dittledittle]

Hi!  Yes we did converse previously on the doc Neurology forum.  It seems I'm complex but I still feel it will simplify once a confirmed brain lesion diagnosis can be made.  I have been checked out on a number of things, NeuroSyphillis, NeuroBorreliosis, B12, ANA,ANCA, Lupus. I don't have vasculitis as they said I would be very sick by now.  I thought I was checked for aPL but I will look through my records.  I chose not to take Remicade (scared to) and instead I am taking Methotrexate.  It takes a couple of months to know if it is helping and I just started to take an increase amount of them.  I've been dealing with all of this for 7 yrs.  The only weird thing about me is that the measles vaccine doesn't work on me and my Mom says I had the measles when I was a kid too.  But I don't show any immunity to the measles.  I don't think this is why I have all this trouble as I have told all the doctors of it.  I researched it on the internet too.  Nothing seems to match symptoms or blood test results for various diseases.  I'm thinking about seeing a Neurologist at another major medical facility in my area.  But am wondering if they will just make contact with my present doc.  All my lesions are in the white matter in the subcortical region.  They did a cervical MRI and did not find any lesions but I understand they are hard to detect in the spinal cord.  Thanks for taking the time, and checking into causes.  How are you doing, I know you have had a rocky road. Hope everything is going better for you.  

[Quixotic1]

Dittledittle and I conversed some time back on the General Neurology forum.  She was caught between a rock and a hard place with one of her docs wanting to use a medication that could have for one disease that could have disastrous results if she indeed had MS, which she had been diagnosed with, but is now in question.

Uthoff's is fairly specific for demyelinating diseases, as the increased temperature slow nerve conductive in nerves with damaged myelin.  I also agree that there is no connection bnetween spinal arthritis (Ankylosing Spondylitis) lesions and brain lesions.  

As for the Leukoaraiosis, that is a totally new word and concept for me!  I did as much reading on it as was possible before my eyes/brain fatigued.  The word is really a "radiological" diagnosis.  That means it is merely a "description" of a specific appearance on the brain MRI.  It is almost always caused by small "lacunar" infarct (strokes) but a few sources that I read said that other diseases of the white matter can give the appearance of "leukoaraiosis"  (thinning out of the white matter) on MRI.  Are ALL of your lesions in the sub-cortical white matter?  And have you ever had MS-like lesions in the spinal cord?

Given the complexity of your illnesses, I would consider appoaching someone completely new and of high regard!! by stating that your history is complex, and suddenly you are bouncing between diagnoses and disagreements about what is actually going on.  That you want someone to take a totally fresh view of your case, your history and especially what you are dealing with right now.  Ask if that doctor would evaluate you and not be swayed by the opinions of the previous doctors.

Have you been thoroughly worked up for the "sticky blood" disorders that cause multiple small stroke, like Hughes Syndrome?  It is also an autoimmune disorder that can perfectly mimic MS. The blood clots too easily and causes recurrent small stroke and the appearance on MRI can be leukoaraiosis.  You should have had the entire workup for things that mimic MS somewhere along the line.  The list which causes lesions like this is long, but a list of the common ones is

Small Stokes - due to Hughes Syndrom, cardiac malformations, etc
Vasculitis - autoimmune process (Lupus etc.)
NeuroSyphillis
NeuroBorreliosis - Lyme disease with invasion of the CNS
Retrovirus infection of the CNS - HIV, HTLV I & II
Wilson's Disease - disorder of Copper storage
B12 deficiency
Recurrent Acute Disseminated EncephaloMeningitis
and some other really rare things

It seems to be that you would make an excellent case for a university, academic, inter-discplinary diagnostic team (House et al, without the sarcasm).  You've been dealing with all of this for more than ten years, isn't that correct?  And the AS is becoming disabling.  Did you ever start.....??...Remicade (is that the one?)  I do remember seeing that your anti-Basic Myelin Protein and your anti-MOG (myelin oligodendrocyte glycoprotein) assays were negative.  What has happened since then?

Aussie Rose - Kitten has lost a great deal of her eyesight and can only read the screen easily when it is written in CAPS.  

I hope you hang around with us.  I enjoyed talking to you, but got too busy here to spend time over there.

Quix

[Momzilla]

Hi!

I'm with you!  Well said!  All this guess work is for the birds....

How very odd for your neuro to say that at this stage of the game!  I don't get it.  I would definitely go for some other opinions, and I think a large teaching hospital would be a great idea if it's available.  That way, you may get the advantage of a few docs looking at your case, exchanging ideas.  Otherwise, try to find out ahead if the doc you choose has experience in MS patients.  That way, she or he can either confirm or rule out MS more easily for you.  Do you know what I'm saying?

I think it's ridiculous, the way your doc has turned around like that.  How utterly frustrated you must be!

Let's get you right back on the horse and toss the old guy onto the Friday roast heap.  Are you familiar with our tradition?  I'm thinking Spicy Cajun!

Zilla*

[dittledittle]

Thank you all for responding.  I have had so many tests for Lupus, Neurosarcoidosis, Wegners, Lyme, etc. with all negative.  I also have Uthoff's and fatigue but maybe there are other illnesses that have all these types of symptoms too.  I'm just so frustrated and concerned.  My rheumatologist says there is no connection with my spinal arthritis and the brain lesions.  Also not vasculitis as I would be very sick at this point.  It would seem in this time era of technology that we would have better testing for all these illnesses and less guess work.  When you go for a second opinion do you have all your records sent or do you have the new doctor start from scratch so that he formulates his own diagnosis.  I'm thinking of going to another large medical center in our area.

[Momzilla]

I THINK WE SHOULD ALL YELL AT EACH OTHER SO KITTEN CAN 'HEAR' WHAT WE ALL SAY ALL THE TIME!  

IT DOES GET A LITTLE LOUD, THOUGH, DOESN'T IT?  BOY, IS MY THROAT TIRED!

AND MY KIDS ARE TRYING TO SLEEP!  SSSHHHH!!!!!

ZILLA*

[AussyRose]

WHY ARE YOU YELLING AT EACH OTHER!?!?!  MY EYES ARE RINGING.  I THINK YOU JUST BLEW MY EYE DRUM!

LOL

[Quixotic1]

THE DATA FOR A CASE OF OPTIC NEURITIS AND A NORMAL MRI IS THAT ABOUT ONE THIRD WILL GET MS IN THE NEXT 2 TO 3 YEARS.  QUIX

[kitten o]

I READ THAT WHEN U HAVE OPTIC NEURTIS
THAT IN 2 YRS OR LESS YOU GET MS.
GET A 2ND OPINION,
GOOD LUCK KITT

[Johnny Utah]

  Hi!

  Leukoaraiosis. Wow, such a big word. It has to feel a little strange to not have something you've been living with for 4 years. I always like to ask if they are sure now?

  I had a neurologists tell me after testing me that I had had a stroke and that she wanted to start some sort of treatment. I asked for a 2nd opinion and got one from the department head within the same hospital. He told me I was fine and that the neuro didn't know how to interpret the data correctly and he was aware of it. Gee, this makes me feel warm and fuzzy. Let me get this straight, shes wrong and your right? you know she makes these mistakes and she is not corrected or provided training? I went to see a 3rd and he said everything was OK. I never went back to the first place.

  So my advice in a very round about way was to get a second opinion. I have done some quick research on Leukoaraiosis and it does sound like it could be a possibility. But, to put you mind at rest I would certainly find a well respected specialist in your area and seek out that second opinion.

  Leukoaraiosis is a serious health condition, and if thats what you have it is important to know that for sure and get a treatment program going.

  Johnny