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Demyelinating lesion in brain, negative LP (CIS)

PostPosted: Fri Jul 25, 2014 7:13 pm
by Alainaluvsu
I was in the hospital last week for a myriad of symptoms (mostly right-sided, but occasional left side involvement). An MRI on the brain revealed a plaque in my frontal lobe in the subcortical white matter, suspected to be demyelinating. Spine MRI tested negative. My IgG levels have all cme back in the normal range, but they seemed to decline with time while I was there from a borderline high reading. They told me that it's Clinically Isolated Syndrome, but are kind of holding out to rule everything out.

Lyme disease was ruled out. B12 cellular was ruled out. Magnesium sits around 2.0. Vit D was deficient, but they drew it after I'd been sitting in a hospital bed for 5 days straight. On top of that, my symptoms were getting better as I was in the hospital (they were giving me no supplements whatsoever, IV was only saline). No signs of dehydration upon intake (I asked). My LP came back normal in every category, zero OCB. IgG CSF index was at .5 (normal is .66). LDH was normal (14). EEG and EMG negative. They did find Thornwaldt cysts in the lumbar, thoracic, cervical, and brain MRIs.

I know I'm not crazy, my reflexes were noted as irregular. Positive Babinski on right side (which they were frustrated from because they had to try a dozen times just to get a reflex), positive Hoffman's, turns negative, then turns positive, all within a minute. Reflexes of right ankle didn't work. This just can't be in my head. A couple more tests are pending (Acetylcholine receptor, binding, Angiotensin converting enzyme, CSF, Myasthenia Gravis, NMO). I have a Visual Evoked Potential test that needs to be scheduled.

I'm just at such a loss....

Re: Demyelinating lesion in brain, negative LP (CIS)

PostPosted: Tue Jul 29, 2014 6:04 pm
by centenarian100
Can you describe your symptoms in a little more detail and how they developed?

Hopefully, you do not develop multiple sclerosis. best of luck


Re: Demyelinating lesion in brain, negative LP (CIS)

PostPosted: Wed Jul 30, 2014 8:32 am
by Alainaluvsu
It's a long history. I'll try to sum it up :)

In 2006 mild tingling along my spine started but went away.

In 2009, it came back more pronounced. Also, I had a couple of very strange symptoms. I could rub between my bicep and forearm and hear it in my left ear. Eventually it all went away. The weird ear thing persisted for years after the other symptoms, however, but eventually went away as well.

In October 2013 it came back and my right limb started to tingle as well. After a month or so I started getting random bouts of extreme pain (mostly a sharp stabbing pain) in random parts of any limb. Eventually I developed occasional incontinence (urge). Muscle weakness and coordination issues started. These symptoms all came and went in a random nature. In March I had a day where I could barely walk because my hips and legs felt weak.

Earlier this month, I had what my doctors are calling an MS attack. Weeks prior, I noticed that my eyelids twitched a lot (I believe it was mostly the left, but I don't remember clearly). My lips also twitched closer to the attack. While performing some strength exams, the doctor did note my left eyelid (the side the lesion was on) was weak and so were my lips (along with with other parts of the body, mostly right-sided). I started walking about 2 weeks after the onset of the attack.

And yes, it sounds like a stroke but they've ruled that out by MRI and CT.