MRI findings - MS vs vascular

[htowndoc]

Long story, but felt I needed some help with this.  I noticed numbness on my trunk back in 2001, MRI of brain and c-spine read as normal, but neurologist felt he saw something on the MRI of C-spine on second look, diagnosed me with "myelitis" and put me on course of steroids (negative evoked potentials); in 2005 numbness in thighs, had MRI a few weeks later which showed 1 lesion in the brain "with increased signal on T2" and was diagnosed with MS; since my diagnosis, I have learned that I have factor V leiden (my mom tested positive so I checked and found out I had it), I had a 2nd trimester miscarriage (attributed to thrombophilia), and then discovered I also tested positive for sickle cell trait!  I was on Lovenox my second pregnancy (due to the first miscarriage), and felt fantastic from a neurologic standpoint (neurologist stated that most women do very well during pregnancy with MS symptoms); I stayed on Lovenox post-partum for 3 weeks, then got off.  about 4 months post-partum, I developed tingling, visual disturbance, vertigo - MRI a few weeks later revealed 1 new spot in the brain "increased signal on T2".  So I've been dealing with this diagnosis of MS.  But my friend is a pathologist (I'm a physician) who said she has seen strokes and death attributed to sickle cell trait, and with my history of thrombophilia (factor V leiden) in combination with sickle cell trait, she wonders if maybe my symptoms could be more vascular in nature.  I did a literature search and actually found case reports of neurologic symptoms in people with thrombophilia who were initially misdiagnosed as MS.  My question is - wouldn't you be able to tell the difference on MRI?  Is it normal to just have 1 lesion at a time with MS flares? should I consider an aspirin a day, hematology consult? or should I just chalk it up to MS and not worry about the hypercoagulability stuff.  (I've never seen a hematologist)  Also, my mom (who also has Factor V Leiden) has had several DVT's, and PE's, and had multiple strange neurologic symptoms in her 20's and 30's and was diagnosed with MS by one neurologist before, (but I don't think she had an MRI), and she has had NO NEURO SYMPTOMS since getting on Coumadin for her blood clotting disorder.  Just a thought...

[Quixotic1]

I'm just wondering here - and not being argumentative - about the problems you mentioned with sickle trait.  If you cousin had no problems before surgery, one could easily envision a brief period of hypoxia under anesthesia that would lead quickly to sickling (long before any brain injury).  And, if your brother's problems with dyspnea (difficulty breathing - for those reading along) showed up in boot camp....well... boot camp is not known for taking care against dehydration and they often work the recruits mercilessly in extreme heat....possible?

I have known trait carriers to have problems occasionally when flying at high altitudes with insufficient cabin pressurization, again, the problem of hypoxia.

I have no idea at all how the Factor Leiden V might react with the sickle trait.  Let us know when you see the Heme doc - which you know you need to do, lol.  You need to take care of yourself.

The diagnostic dilemma here makes a good argument for the LP - even though they are rarely needed after diagnosis.  The presence of an elevated IgG Index or the more specific Bligoclonal Banding would help you know that MS is likely a player along with your thrombophilia.  I say these things glibly, but I am not a neurologist.  I just read a lot of the MS literature and think about it alot.  I have a lot of time (though little energy) since I left practice in 2001.  However, a negative LP would not negate the MS diagnosis.  Many neuros believe that it does, but the literature does not bear this out.

There is a very prevalent myth that a negative LP means no MS, and this is poopycock, in my never too humble opinion.  In studies looking at newly diagnosed cases, the range of positive LPs is 94% to 97%.  However, I recently read an interesting one where they re-worked up a large number of people who had been diagnosed some time previously in their clinic.  There were about 10% found to have been misdiagnosed with MS, and only about 70% of those with re-confirmed MS had oligoclonal banding (if I understand the statistics lingo right).  .  If nothing else look at the stats that in PPMS only about 60% are positive for O-Bands.

I bring this up, because an LP - even after this long - could possiblly negate the diagnosis (erroneously so) in the eyes of some MS neuros.

Quix

[htowndoc]

Thanks for your long and detailed response!  I have never had an LP because I was always considered a "classic case" of MS (young female, relapsing/remitting neuro symptoms with MRI findings) - but at that time no one mentioned anything about my hypercoagulable state; but since my diagnosis I have had a thrombotic event (2nd trimester miscarriage).  I think I should definitely see a hematologist! (I've actually been referred to a hematologist twice, but due to a hectic work schedule, I ultimately never followed up)

It's interesting that you have exposure to sickle cell trait - my cousin unfortunately passed away under general anesthesia, and the autopsy revealed sickling of her coronaries (and she only had trait, not disease) and my brother had significant exertional dyspnea, shortness of breath during boot camp and a work-up led to his discovery of sickle cell trait.  I only found out I had it during my pregnancy when I was screened for it.

I did have evoked potentials with my first bout of "myelitis" which were all normal.

Thanks again for all the info!  This website seems very informative, I wish I'd known about it before now =)

[Quixotic1]

Welcome to the forum from one doc to another!  Since hypercoagulable states are high among the "all more resasonable causes" that need to be ruled out before a diagnosis of MS is given, I think this should be investigated until it is clear there is nothing else to be asked or answered.

I'm not sure there is a surefire way of telling an MS lesion from a vascular one, except some of the vascular MRI ( MRA?) techniques might show something immediately upon the appearance of a new symptom.   I might seek out the most knowledgeable neuro-rad I could find and discuss this with him/her.  Certainly, you have symptoms referencing far more than one area in the brain and only the one lesion.  However, if you spend much time with us you'll know that I put little store in matching symptoms with lesions.

Have you had the auxillary testing, like an LP, to look for evidence of an immune inflammatory process which you would see in MS, but not in hypercoagulability states?   Thrombophilia - and the ministrokes it might cause - would not cause oligoclonal banding in the CSF.  Have you had any evoked potentials?

With regard to sickle cell trait causing strokes and death, I am only aware of this happening when the person was compromised such the trait could actually cause sickling - eg. states of hypoxia, heat stroke or severe dehydration.  The trait itself is assymptomatic under normal circumstances.  I dealt with sickle cell anemia daily during a 10yr stint practicing pediatrics on the South Side of Chicago.  The only time I saw it active was when combined with Hemoglobin C which won't show up on a rapid test, but must be looked for on electrophoresis.

Factor V Leiden is another story.  I definitely think you should be evaluated by a hematologist.

I only showed one brain lesion during my initial two years of MS symptoms.  Only when I moved to a higher resolution MRI did my many spinal lesions show.  There is no rule that states that a new lesion must be seen during an acute relapse.  The MRI "may" show a new lesion or new enhancement, but the determination of a relapse is made on the basis of symptoms - not the appearance of the MRI.  There is often little or no correlation between symptoms and lesions.

There is also no reason that a person can't have an inheritable coagulopathy AND MS.  It's just that the testing must be all the more complete.  One of our members, Siddy, has both MS and Factor V Leiden.  It seems that treatment with some form of anticoagulation therapy might be in order on a prolonged basis to help distinguish whether you are having new neurologic symptoms on that basis or not.

I don't know if this has helped, but I hope it has.  I reread it and it is a jumble of thoughts.  My cognitive processes are under the weather tonight.   I hope you stick around.  There are a ton of medical questions here and even more compassion and support!

Quix, MD

[SailorGal]

I think you should check out CCSVI -- Chronic cerebrospinal venous insufficiency.  Visit this website for info: http://www.thisisms.com/forum-40.html

In a nutshell, stenosis of the jugular vein (in the neck - brain) and of the azygos vein (in the chest - spinal cord) causes reflux of blood back up into the brain which causes increased pressure which causes red blood cells to be able to cross the BBB where iron (and other debris) is deposited into delicate brain tissue which causes the immune system to activate which causes inflammation to occur which harms the brain tissue and veins even more, but more importantly, the T and B cells  and macrophages also cross the BBB which causes demyelination to occur.

Dr. Zamboni of Italy has found that nearly 100% of MS patients have stenosis of one kind or another; reasons for stenosis vary: genetic mutations, congenital, accidents, and more.  Some jugular images show twisting, pinching by a collar bone, missing one jugular, narrowing, and more.

Dr. Dake at Stanford is putting stents into the jugular and azygos veins of MS patients with stenosis to restore normal blood flows to stop MS progression and perhaps to help symptoms -- all patients anecdotally report immediate relief of some symptoms.

Other things that might help are sleeping in a more upright position, aspirin for its blood thinning properties, eating an epithelial-healthy diet, Vit. D3 supplements, and more.

Visit the TIMS website for more info!

~SailorGal