Mystery condition: Possible CNS Vasculitis

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Date Joined Feb 2015
Total Posts : 1
   Posted 2/7/2015 8:19 AM (GMT -6)   
45 yo. single Mom (3 year old daughter) who has possibly had diabetes since about 2003. It went undiagnosed due to lack of insurance, and because I was a care-giver for my Gran and Mom for over 10 years.

In Aug. 2013 I woke with an uncontrollable tremor on the right side. I tried to wait till my insurance kicked in, but couldn't. At my 1st ER visit I was diagnosed with Diabetes. Unknown on the tremor, possibly drug related. Two more ER visits with no answer, then a PCP visit and ref. to a neurologist. MRI 12/2013 came back with "Scattered ovoid subcortical mildly bright T2 lesions within cerebral hemispheres. Abnormal bright signal located within the left basal ganglia id'd only on T1-weighted imaging. Ill defined signal is not evident on the T2 imaging. Taken together, these findings raise concern for CNS vasculitis.

Along with the tremor on my right side, I was having periods where I would have other right sided symptoms. It started out with a feeling of pressure at the base of my skull, radiating waves of fatigue, right side numbness & tingling in extremities (leg, arm, face, jaw, sometimes tongue, and back -shoulder blade level). My vision would blur, speech would be slurred, I'd generally act drunk, and if I did not make it to a chair to sit down I would fall to the floor. No loss of consciousness. My feet also sometimes fall asleep when this happens, it is difficult to walk & my balance is off.

My feet are always numb (possibly due to the diabetes) and cold, I have been told I have good circulation in them. For two months it was assumed that I had Chorea Hyper-ballism, a rare movement disorder that generally goes away quickly upon stabilization of blood sugar levels. Mine did not go away. I was treated for 2 months with Haldol which reduced the tremors almost totally in my leg, but I still have some residual tremor in my arm/hand, and facial twitching (Mainly my eyes) at night. I was given a follow up MRI in 12/2014 and was told:
Numerous peripheral greater than deep white matter FLAIR hyperintensities without current enhancement. Previous enhancement of the left basal ganglia has radiographically resolved with encephalomalacia. There are several new fociand several foci are increased in conspicuity compared with prior examination. There is a new left lateral thalamic lesion and slightly increased conspicuity of a right superior frontal subcortical lesion.
Appearance can be seen with cerebral vasculitis/angiitis, as suspected based upon the CTA exam. dated 12/2013

I'm really worried! I'm a single mom (45) who JUST lost her only sibling in Nov. 2014. Sis had AI problems (Auto Immune Liver Chirrosis, AVM, Psoriasis/Psoriatric arthritis, thrombocytopenia), and my mother passed away from complications of Lupus, Hashimoto's thyroiditis. I am having a CSF test (spinal tap) this coming Wednesday. Hoping to get some answers. I have a new doctor (an internest) who I've been with since Jan. 1st. HE is taking me seriously, my former PCP was NOT! I've found some support in Vasculitis pages on Facebook (Vasculitis Social Network / Vasculitis Patient Advocacy Network (wwwDOTvasculitisPanDOTorg.) Otherwise, I really don't have any support or anyone to talk with about this. Anyone I DO mention it to has never heard of Vasculitis, and my doctor has also mentioned Parkinson's OR MS.

My daughter and I are currently in Northern Cal, but doing our best to save money to move back to the Midwest where our only family is... (cousin's and an aunt/uncle). It's hard to be ill and alone... especially with a small child.

Blood test 1/15/15 came back with ANA negative, Sed Rate: 56 , Rheumatoid factor:24 both high.

Post Edited (KatsMom) : 2/7/2015 6:29:59 AM (GMT-7)

Veteran Member

Date Joined Nov 2015
Total Posts : 4895
   Posted 12/23/2015 7:57 PM (GMT -6)   
Did you find answers. ..i had same was lyme

Elite Member

Date Joined Mar 2009
Total Posts : 20251
   Posted 12/23/2015 9:02 PM (GMT -6)   
wishing all the best. my condolences for your loss. hoping things turn around for you.



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   Posted 1/2/2016 12:16 PM (GMT -6)   
KatesMom has not been back to HW since the above original post. If you will click on a members name it will show you when they last posted here at HW.
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