Small Vessel Disease

[monotreme]

On my brain MRI films that have a lesion near the ventricles, brain atrophy, and multiple T2 hyperintensities in the subcortical white matter, the report says possible small vessel disease of the brain. I was reading  last night that small vessel  brain disease is a mimic of MS on a MRI except for the fact that MS has lesions.   My primary doctor has said that there is no point of seeking more opinions and is trying to prevent me from going to the west coast, where the doctors  want a letter from my primary saying I am allowed to go to another neuro.  So has anyone else been told they have small vessel disease of the brain?  I do not have diabetes, high cholesterol, and my high B/P is under control with two meds.  Can small vessel brain disease actually make your legs so weak that the doctors say I will never regain normal leg function again?

I am having a neuro radiologist review my films with me and perhaps he can help me convince my primary that I should go out to the west coast to see another neuro.  What frustration......craig  

[cinemiracle]

I have had it for about 5 years and it is  slowly getting worse and makes  walking very very difficult.Was given  madorpar tablets to take 3 times daily but  stopped  after a month as  my legs became  stiffer and made it  harder to walk (could only shuffle).I am told that only 10 to 15% of the drug actually gets to your brain and the rest   disperses   around your body.There is no cure but   hopefully one day  gene therapy will become the   cure for this disease.I would like to hear from others as there are no suppots groups around.

[js1989]

what you are dealing with sounds so frustrating.  i am in a somewhat similar situation.  i am going to my 2nd opinion in january.  i couldn't get in earlier because i'm not considered urgent.  my neurologist won't tell me what's wrong and says he's unsure, and is waiting on a neuropsych exam and spinal tap to put everything together, but since i'm not blacking out or having strokes it isn't urgent, says the neuro.  the most i found out about what's wrong with me is the insurance co. was refusing to pay for part of the neuropsych exam so he wrote a letter of medical necessity, which i got a copy of.  i have real difficulty walking, falling, with my memory, swallowing, sometimes understanding, no sense of smell or taste.  so similar to you, my life as i knew it has really changed and it seems unimportant or a priority to my doctor.  the neuropsych won't see me unless i pay cash since the insurance hangup, so now i'm in nowhere land.  just wondering how you're coping with the changes in your life?  it all seems so out of control. i'm hoping you find a dr. who really cares about you.

[fishyfish]

Ugg...that makes me feel sick to my stomach.  If he wants to give up, why won't he refer you to someone who could help you?  There's something seriously wrong with that doctor.  Definately high time to fire him.

Good luck getting a MUCH better PCP, and the consults you need.  I'm throwing good vibes and doctor-helpfulness-voodoo your way.  Stay the course.

Fishyfish

[Quixotic1]

Ahh... Oregon has two quite liberal health laws and I wonder if the legislature wrote that in as a protection.  One is the Right to Doctor-Assisted Suicide, and the other is a fairly liberal Medical Marijuana law.

You need a new primary.  Junk this *******!!

Quix

[Momzilla]

Oh, my goodness!  How can your primary doc give up on you like that?  I'm so sorry!  It's outrageous!  It makes me sad and furious at the same time.

I am going to bed now and will say a prayer for you and your wife, Craig.  We're just getting started, right?

Zilla*

[monotreme]

Quix, thank you.  I have plenty of insurance and do not need referrals.  The trip up is that Dr. Morrow says he wants a permission letter from my primary saying I can leave the state of Delaware to go to Oregon and see a doctor.  My cushings doc in Seattle who used to be in Portland said that in OR there is a state lawthat says that a doctor cannot treat someone who is crossing state lines into Oregon for care unless the person's primary doc says it is ok.  he did agree to review my MRI films so I am sending them  along.  If he thinks he would like to see me, then I can get a doctor friend to write me a letter and fax it to Dr. Morrow.  

My primary says to give up, go in a wheelchair and stop whining.  He doesn't wanrt to give me permission to leave to go to OR.  He said that going to two neuros is enough and when I asked him to give me his diagnosis of what I have he said he does not know and I should just leave it at that.  he said he is tired of trying to help me.

So I am off to find another primary doctor.

I was so distraught after talking to the primary Monday that my wife called jefferson hospital in Phila and asked if the neurology dept had any cancellations.  Their policy is to put all new neuro patients in the Parkinson's clinic because they are so overwhelmed with patients right now.  So there was an opening and I took it.  Why not get another neuro visit while waiting to see if Dr. Morrow will see me.  

When the primary doctor gave up on me, I was so sad that I went to bed and slept for 12 hours,,,trying to escape from this bad dream.  For goodness sakes, I can't even lift my foot to put on a sock.   I will let you know how the neuro goes.  Mri's are getting fed exed in the morning, along with a note of my symptoms and the three EMG reports and MRI reports along with the films on a cd. to Dr. Morrow along with some prayers too.

Thanks so much everyone...craig

[Quixotic1]

I do not have a definitive answer on this.  My "impression" as I read is that small vessel disease, as in high BP and migraine disease is a "MRI MIMIC of MS" and not a clinical one.  The people in whom they find small lesions on MRI, and have no symptoms and it is written off to microvascular changes.  I can find no where that states that micro vascular disease causes muscular weakness, spasticity, ON, neuropathic pain, and renders people helpless to walk.  - Short of actual strokes.  Craig when you said , the difference is that MS has lesions, don't you mean "clinical lesions" - actual deficits seen in the body?

Also, becasue microvascular changes are more common as we age, MSers over 40 will also like have some of those lesions, too.

Pat- the "capping" phenomenon is highly suggestive of MS.

I truly wish I knew the answer to this question because I think it trips up a lot of doctors.

Will Dr. Morrow review your case without insurance coverage?

Quix

[monotreme]

Yes, I  often wonder  if the radiologists actually knew the patient whose MRI they are looking at and the leg weakness etc, maybe they would not be so quick to diagnose small vessel disease of the brain.  Any one else have small vessel disease on a brain MRI??  I still think it is MS because I can't move much at all..Craig

[risnerrose]

My MRI report also mentions small vessel changes.  I was so caught up with the lesions that I didn't pay much attention.  I'm anxious to see what others have to say.

[6-paq]

I'm sorry you're facing a battle with your PCP on this.

I have also read about small vessel disease being a mimic.  I do believe that SVD has lesions as well.  

I saw an MRI image once that looked very similar to my lesion (capping around a lateral ventricle), except that SVD has bilateral lesions and I only have the one periventricular lesion (and one small non-periventricular one).  My MRI report said that my two lesions highly suggest demyelinating disease, but are "non-specific".

I also do not have diabetes, high cholesterol nor high BP.

Sorry, I can't be of more help.  Just wanted to "bump" your post up so others could see it.