Update On MS and Chronic Brain lesion

[massie7899]

Hi all,

Do any of you have MS with chronic brain lesions? My neuro is excluding MS and considering vascular disease of the brain due to location of the lesions and chronicity of the lesions ( compared to 2009 MRI of the pituary gland).
Just wanted to give you update.

I saw neuro on Monday and he feels that I have cerebral small vessel disease due to no changes in Periventricular and Subcortical lesions on my MRI and due to past history of Migraines with aura.Last incidence of migraine 4 years ago. Overall neuro symptoms worsening for 1 year now. Recent testing also reveals Autonomic dysfunction/ neuropathy.

I've posted here before and some of you may some seen my posts. I've been told this condition can mimic MS. Some of my testing again includes : Negative  LP, abnormal EP, Abnormal neuro-psychological testing, abnormal anorectal manometry due to incoordination of lower bowels, severe constipation and spasticity, inaddition to abnormal physical exam ( ataxic hemiparesis, hyper-reflexes).

What are your thoughts?. You guys are awesome and thanks again for reading and responding to my post if you can find the time.  

[immisceo]

Thank you for the update! You're quite right. This could be very helpful for others in the future.

[aspen2]

(((hugs))) Massie.  I'm glad you have answers, although I don't expect this diagnosis is a walk in the park, and I'm sorry.

Given the ms-y location of your lesions, thank you so much for coming back and giving an update.  Very helpful for those of us stuck in limbo -- many of us will not have an ms diagnosis.

I'm so glad your doctors were able to sort this out.

[massie7899]

Its been awhile since I posted. Waited so long to get answers and I did. I always read these post and never see people come back to give outcomes or further info on their condition. Well, after long years of illness and misery, this what I found out.

I have small vessel disease of the brain caused by erratic episode high BPs that no one was aware of causing external capsule infarcts and white matter lesions due to blood vessel damage. This further contributed to the autonomic nervous system dysfunction all caused by  HEREDITARY PARAGANGLIOMA AND PHEOCHROMOCYTOMA, the head of all my medical mischief. Can you believe this. I am gong through more work due to anemia. I just found this out a week ago. Thank you and the wonderful MSers here that have been awesome and kind to me . Many blessings and wellness to all of you.

[massie7899]

You are so right. Your response is very helpful and informative, As I mentioned previously, I wanted to hear from those of you who have MS with chronic lesions and I truly appreciated you insight and advice. Your are awesome and thank you so much

[massie7899]

You are awesome and I did read this article and I agree with you. This is why I wanted to know if some of you have chronic lesion. Thank you for your time and informative response. I don't smoke, no high blood pressure, no high cholesterol nor diabetes but impaired glucose which is being treated with metformin, otherwise nothing else to cause this at age 43 with onset of symptoms initially in my 20's ( neuro said past history fo migraines can do this  but I don't know of migraines causing hemiparesis for one year now with ataxia and other host of issues for me. I was told with the vascular you have to treat the underlying causes and I haven't had migraines in 4 years.
Again, I so grateful for your reply

[HVAC]

I have had MS since I was two. I had my first MRI in 2007. They are all identical. I have the same old damage nothing new. The optometrist showed me my eye he said same thing really old damage on the optic nerve nothing new. They can tell more from the neurological exam they do in the exam room. They were diagnosing MS before MRIs. A good neurologist can tell where in your CNS the damage is. MS usually shows asymetrical damage or signals. My reflexes show I do not get signals on my left side, but I do on the right. They know My damage starts in my brain stem. They also know the 5th nerve to my eye is screwed up. They tap me in the face with the reflex hammer. A GP can do a neurological exam.

Alex

[Lulu54]

Hopefully you have copies of all these MRI's and you can take them to the next place and ask for a review of the images. Because you are seeing a doc who is exclusively seeing MS patients, don't you think he would have cut you loose is there wasn't still a question about the MS?

There is an article in the Oxford journals that talks about finding cortical and subcortical lesions in MS on autopsy exam.  

http://brain.oxfordjournals.org/content/122/1/17

Did this neuro suggest any treatment for you if he wants to call it vascular?    

good luck with this next step, Laura

[massie7899]

You and Ess got it right.  He said chronic subcortical lesions/ cerebral white matter lesions are usually seen with vascular conditions rather than MS. He stated that my lesions has not changed since my 2009 MRIs which makes my condition more vascular like small vessel disease of the brain than MS. I have ask to do my MRI with contrast and take the prep for allergic reaction prior to the MRI but neuro said its too risky since I'm allergic to the dye. He said subcortical lesions are not common in MS, especially chronic lesions without changes. Most of my lesions are distributed in the subcortical, then periventricular and supratentorial

I can't imagine having small vessel disease of the brain  since my 20's which was the onset of my symptoms, which then resolve and got worst after the birth of my son in 2010 and got uglier one year ago. I don't have high cholesterol , hypertension but has impaired glucose  for over 1 year now and Migraines which has not bothered me since 2010 and wasn't that frequent. My neuro is a local MS specialist. I'm thinking about having my next MRi done at a different facility . I just find it hard to believe that my symptoms are due to small vessel disease of the brain which he said mimics MS. i think he's being overly cautious and will be seeking another opinion after my next MRI

[essdipity]

I have to ask--are you sure that's what your neuro said about your MRI? It just doesn't make sense. Virtually everyone with MS has 'chronic' lesions, meaning they don't go away. Some lesions do pretty much heal over, to the extent that they can't really be identified on later MRIs, but the healing doesn't put them back to totally normal. An MRI or series of MRIs where from year to year there were entirely different locations and lesions would be very odd.

So then I'm wondering what he might mean by chronicity, which I've always understood to be just a fancy word for timing. Maybe I have that wrong, and if so I hope someone will correct me.

An LP result not indicative of MS does not exclude the diagnosis by any means. A positive LP simply adds to the weight of evidence towards a diagnosis. A great many members here have had negative LPs yet got the MS diagnosis in view of other evidence, especially over time. I'm one.

The other symptoms or test results are all consistent with MS, though no one thing is diagnostic. Maddening but true.

In your shoes I'd make sure I'd understood properly, and if I had, I'd be looking for a new and better informed MS neuro before you could say 'incompetent'!

ess

[jensequitur]

Are you still seeing the John Hopkins dude? If so, I agree with Quix - get away from this guy, as quickly as you can! All your symptoms scream MS except for the negative LP.

Here's the report from my last 3T MRI of brain, cervical spine and thoracic spine.

Previously seen abnormal cord signal at the level of T10 is again visualized
but decreased in prominence. Additional focus of abnormal cord signal within the conus at T12 is unchanged. No new or enhancing lesions are identified. A subtle area of increased T2 cord signal on previous study at T4-5 is not well seen on today's study. There is a small right paracentral disc protrusion at T7-T8, unchanged. Minimal disc bulge at T10-11 is again seen and unchanged. Alignment and vertebral body heights are maintained. Bone marrow signal is within normal limits. No abnormal enhancement is noted. No significant disc herniation or spinal canal stenosis is noted.

Brain: Again seen are multiple foci of T2 hyperintensity scattered within
bilateral centrum semiovale, radiata, corpus callosum, periventricular and
subcortical white matter, as well as the right pons and cerebellar
hemisphere. Although several of the lesions are more conspicuous on today's study, findings are felt to be unchanged given the differences in technique. No new or enhancing lesions are identified. The optic nerves are
unremarkable. The diffusion weighted images demonstrate no evidence of acute infarct. No abnormal enhancement is noted. There is no hydrocephalus, acute hemorrhage, mass effect, midline shift, or extra axial fluid collection. Midline structures are within normal limits. The paranasal sinuses are clear.

Cervical Spine: There is a subtle focus of abnormal cord signal along the
left posterior lateral margin of the cord at C5-6. Otherwise, cord signal is
unremarkable. Alignment and vertebral body heights are maintained. Bone
marrow signal is within normal limits. No abnormal enhancement is noted.

I had this MRI done last year, after I had gone through my total family cap. Free MRIs! Yay! No new enhancement, no atrophy, and I'm feeling pretty good, so all that is good news. I would have been diagnosed without an LP if I'd had a better neurologist. My results showed 5 bands.