Quix--vascular mimics?

[SOONERMOM]

Quix,

I saw the MS specialist this week.  I had 2 abnormal neuro tests for the 1st time--left reflex was hyper and something w/my left eye not seeing red as dark as right.  I thought my shoe was going to fly off my foot and hit someone!lol

He also LOVED the timeline, so thanks for the heads up on that.  He kinda looked at me like..how did you know to do this?....He spent about 45 minutes w/me and has been the best dr. that I have seen.  I have @13 wml's and have been experiencing growing unilateral numbness/paresthesias since 10/07-started in left face has made it down to left foot.  

He told me that I only have a small chance of having MS, because my lesions weren't in the "typical" place for ms and even though my left reflexes were hyper, my babinski was not and so he thinks I have some vascular issue going on (also-I have always had migraines).  Of course  he threw in the disclaimer that there are always they "atypical" cases.

He is sending me for more testing for susac's disease--  I tested negative for APS and every other blood test was negative also(auto-immune)--Is there anything else that you can think of that might be off the beaten path?  He said I have symptoms from a few different diseases but nothing that fits one disease.  This all started w/2 bad nosebleeds, last one w/migraine that  totally resolved pain & pressure of migraine.  then slight swelling and numbness..that eventually turned into numbness and grew.  The first mri was to rule out aneurysm--and they found wml's.

I assume that since I have had 2 mri's w/contrast that if there were something putting pressure on any area of  brain they would have found that (like a tumor)??

Thanks,

Stacey

[SOONERMOM]

Penn, thanks so much for looking that up, especially with all the hassle you have been going through w/your medical records!  UNBELIEVABLE- I would have lost it!!

Quix-  what about CNS vasculitis or more specifically Benign Angiopathy of the central nervous system?  I have had a rash that looks like levido reticularis for at least a month and started having right sided tingling/burning sensations a couple of days ago for the first time (had all been left-sided).

Another comment that the MS specialist made was that my symptoms have gone on too long for "typical" MS.  

I will admit it, I am terrified of having a stroke.   I feel that I should look into this for my own peace of mind.  It seems that I have new symptoms or worsening of symptoms every few days or so.

Stacey

[Quixotic1]

Hi, guys.  Vasculitis iis a nonspecific term, but is usually an autimmune attack on the small arteries (sometimes larger ones)  but, what you both are really talking about are the autoimmune mimics of MS, like Lupus, Sjogren's Disease, and the others.  Vasculitis is one of the ways these diseases cause their damage.  The tests for them are the markers of inflammation (Sed Rate and CRP), ANA, the other nuclear antibodies, anemia, etc.  Autoimmmune vasculitis would be unusual with a normal sed rate and ANA.

Vasculitis shows up on MRI as "ischemic vascular disease," also called microangiopathic disease.

Quix

[pennst8r]

Sorry it took so long - bad spasm and twitching week, aside from DH in the hospital.

Vasculitis was ruled out in my blood work, although there are other tests that can be used as well.

In bloodwork, they looked @ erythrocyte sed rate, c-reactive protein, white blood cell count (would be high), low red blood cell count (would be low), platelet counts, ANCA and ANA. It can sometimes show on an MRI or CT scan, as well as urinalysis (high presence of red blood cells and/or protein.

There is more invasive testing - I wouldn't even explore unless the blood work shows reason for it.

Hope this helps.

Penn

[pennst8r]

It's been quite a while since that was ruled out for me. I will dig out my records and see if I can locate which test ruled it out. I'll get back to you.

Penn

[SOONERMOM]

Funny you would say vasculitis because:

1)  It was one thing mentioned on first MRI to explain WML's
2)  I am having edema issues upon waking up and when I googled edema and numbness    this morning before reading  your post --vasculitis came up.

I originally had a sed rate and ana done back in Oct. both were negative.  Is there another test that they can run for vasculitis?

In the past few weeks, my hands have been slightly swollen each morning, like I can't make a fist when I first wake up.  It always resolves w/in 1-2 hours so I just hadn't worried about it.  Last night I woke up in the middle of the night on my right side (must have been there for a while) and my right hand felt about 4 x the size of my left and my left side of my head & eye felt really funny.  (I should have turned on the light to see if it looked different)

I have so many things going on, not sure what is really important any more??

If there is another test for vasculitis, let me know.  I will call and ask for it!


Thanks,

Stacey

[pennst8r]

I had testing and rule out a mimic called vasculitis. Have you been tested for this?

Penn

[SOONERMOM]

I get migraines first on the left side, if they come back the next day they will be on the right, etc.  I don't really get the "aura" before them anymore, but I do feel them coming on behind the left eye.  Mine had been monthly before all this started.  I have been using Maxalt which has been like a miracle drug because nothing over the counter ever helped me.  It was basically like I had to go into a dark room and lay still  and try to go to sleep to get away from the throbbing pain.  It is definitely different than a regular headache that ibuprofen will help. (which I get also)

If your headaches are incapacitating (they sound like migraines to me)  I would at least ask about a "triptan",,,, because usually they completely abort the headache and I can just go on about my day.
I am sure that if you are  on this board that you have a neurologist--i would bring up the subject and he/she probably has a pre-typed sheet on all the migraine triggers.  I guess you could try keeping a journal about them too?

He did have me take off my socks.  His babinksi was much more irritating than my neuros.  (really uncomfortable)

Stacey

[Quixotic1]

Of course, you would know I have things to say about this.  It certainly could be that some of the lesions are be from migraines, but it sounds like he is actually thinking small strokes.  I am really not knowledgeable on that topic.  Glad he's ruling it out.  Migraines alone give you the WMLs, but not the abnormal neuro findings as far as I am aware.  Nor do they give your signs of optic neuritis (as is implicated by the lack of color saturation).  My bets are still on MS.  

Yes, the MRI's should have definitely shown increased intracranial pressure and they should have also shown any tumors or masses.  Have they done MRIs of the spine?  With the hyper reflexes that becomes mandatory.  WMLs in the spinal cord have many fewer causes.  That would rule out migraines.  I feel he is off base by insisting that the hyperactive reflexes would always be accompanied by a + Babinski.  I had both hyper reflexes in my right leg AND spasticity in that leg for more than a year before the Babinski turned positive.

And you know how I feel about insisting that lesions be "in the proper place"!!!   Atypical does not mean rare.  It just means that it isn't the most common presentation.  That is clearly a distinction that a lot of doc's don't make.  I have only one brain lesion and it isn't in a typical spot at all.  But, it is a classic plaque.

But, your neuro is doing a logical work up and that is good.  The spinal MRIs are important.

And, I too, am curious about whether he did the Babinski with or without the socks on, lol.

And thanks for the good words on the Timeline.  the docs that appreciate it really do pay attention to it and to you.  The ones that don't .... well, we know how we feel about them.

Quix

[CtResident]

Would you please describe what you mean by a migraine? I get headaches, on the left side and behind my left eye. They last about 2 days and I'm photosensitive during that time. (Sunglasses while driving at night!) I take OTC meds for them. Never been "officially" diagnosed or given stronger Rx for them. I can't figure out what the trigger is, because I could get 3 in a month or go 6 months without one. Just wondering what your story was.......

Also, don't laugh, but I've gotta know. Did the dr. check your Babinski's reflex with the socks on or off? I had one dr. check mine with socks off. Next dr. checked with socks on and said he wasn't impressed, no "brisk" reflexes.

Thank you,
Suzanne