Wingless Butterfly said...
I am not new to Healing well.com but I am new to the MS panel...Pleased to be here.
I have had Lupus SLE for almost 19 years now since I was 16. Well for the past year and half I have been suffering some horrible headaches at least 4 times a week most likely every night but at times I get lucky. Since I have lupus, my Docs always dx as lupus or stress. But about 5 months ago, my memory started getting worst than the regular lupus brain fog. Then I started getting ringing in my rt ear, muffled hearing in the same ear then I started with extreme blur in my right eye and eye pains. Well finally my doctor did a MRI which showed......"periventricular non specific white matter changes bilaterally which " and "suggests a demyelinating process such as MS but could also be vasulitis." The test shows that "MS cannot be excluded as a diagnosis."
Okay now heres the problem, my PCP says I have enough going on don't worry about another issue. But my rheumy upon receiving the results rushed me to a Neurologist. The neurologist I saw 1st (I see different ones each time!) said it was of little concern and gave me a return appt, but today I had the return appointment and this Neurologist says MS could be the problem. Does severe headaches qualify as a symptom? I know the eyes and the ears problems can be and the tingling in my feet that has just started can also. Seems like vasulitis would be the issue since I have Lupus but they wont even address that because they are ALMOST certain its something else. all that has been ruledout is MIGRAINE, STRESS Headaches, CLUSTER headaches, neck/spinal problems, TMJ.......Why cant they decide? I need some help...PLEASE.
Oh! I also forgot the falling .....I've lost my balance and fallen 3 times in the past six months for no reason. I didnt get dizzy, or faint I just seem extremely clumsy lately.
"They" can't decide because all these various disorders -- lupus, MS, vasculitis, migrain, stress, etc. -- share symptoms, sometimes; "present" themselves in similar ways to a doctor, and on MRI's, and so the doctor needs to rule out as many as possible in order to come to a firm diagnosis.
And unfortunately it could also be possible that you have more than one problem occurring. Headaches have all sorts of causes. Cluster headache is one form of migraine, and migraines (and cluster headaches) can cause lesions to appear on an MRI. But vasculitis also can cause headaches, and lesions to appear on an MRI...as can lupus, and MS. Eye pain can be a sign of optic neuritis -- which often is an early sign of MS -- but a doctor examining your eyes can see pretty clearly if the optic nerve is inflammed (which is a sign of optic neuritis). If it isn't, then the diagnosis of "cluster headache" might be appropriate.
The line, "....MS cannot be excluded": When you get an MRI, and it is "read" by a radiologist (who is the one to fill out that report you're quoting) -- it's sent to your doctor who then interprets it, based on what else he knows about his patient, and what other symptoms are present.
You need to be seeking consistent care from the same doctor(s) who know you and who have been following your health situation. And where there is inconsistency -- the two neuro reports -- you need to ask your rheumatologist to talk to them and see if he can determine where the inconsistency is, and where to go from there. You should not have to sort that out. If the rheumatologist isn't willing to do that, then ask your pcp to do that. You should remind your rheumatologist about the vasculities -- which can be serious if not treated -- and make sure he tells the neuros about that, when he consults with them about your situation. Good luck!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....