I developed unilateral pulsatile tinnitus, facial pain, numbness and pain in left side of body. 10 years ago they thought I had MS but I did not present typically had two non-enhancing lesions. My tinnitus and worsening of symptoms occurred this summer. My concentration is difficulty and my headaches. I am a migraine sufferer but this pain is not migraine. I know the difference. I have had MRI, CT, CTA with contrast, MRA, MRV, EEG, BAER, VER, nerve conduction test, they say one new lesion and possible total occulsion of left transverse sinus. Bloodwork did not reveal any issues like lupus or RA or lyme. I aslo noticed that my skin seems more sensitive to cold but does not turn white or blue it turns red. I have had increased sinus issues and some unexplained post menopausal bleeding. No cancer but will have a D and C soon.  I have a history of hypothyroidism and I am overweight. I  went to neuro otologist and I have no tumors. I was getting no answers. So I decided to take films to vascular neurosurgeons for them to look at the films since no one was concerned about the possibility of hypoplasia vs stenosis of left transverse sinus except me doing research. I am scheduled for cerebral angiogram next Friday. I am going to ask about a LP. However I read that lesions are not typical with IIH. But this new onset of symptoms could be this on top of something else. I have been complaining about pixel type vision that has been inconsistent over the years. Doctors think I'm crazy told me stress lol. A few months ago when things were really bad, I looked up a the ceiling and it looked like it was snowing, scared me big time. I am going to ask for eval with neuro opothalmology as well. I am not functioning well. I am really scared. Any advise is greatly appreciated. I presented additional symptoms to see maybe someone here is similar.

Hi Ruby, and welcome to the forum! I'm so sorry to hear you've had such a struggle. It doesn't seem like you have typical symptoms of IIH, but it can be a secondary to another disease or disorder. It really seems like you're doing everything you can to find out and I couldn't think of any other tests to suggest.

Whatever the cause of your symptoms, we can at least understand the frustration and concerns. IIH is very difficult to diagnose and treat, so it has taken months or even years of suffering before some of our members have found relief. Please feel free to check out the site (especially "General Information") and let us know if you have any questions. You may also want to look at http://ihrfoundation.org/ and contact them with specific questions or concerns.

I hope that helps!
Take care,
Julie

hi Ruby;
how did your angiogram turn out?  I wonder if Lupus could do this sort of thing.  it sounds like it could be some type of problem that causes excessive clotting (hypercoagulation or thrombophilia) and so you have multiple manifestations of that and of other perhaps autoimmune symptoms.  lupus can present with IIH secondary to cerebral venous thrombosis.  the visual changes you describe are similar to what I've seen other IIH patients describe.  it's called "visual snow"  I think.  definitely see a neuro-ophthalmologist.  and ANY doc who tries to say it's psychological or stress, RUN from them.  that is a cop out from a doc who doesn't want to admit their ignorance.  I would know, I'm a doc.  all of us here have been abused by docs who cop that attitude, and I think it's inexcusable.
I just googled it, and Lupus can cause those nonenhancing lesions seen on your scan, by way of a vasculitis.  make sure you get a full blood work up for Lupus and anti-phospholipid syndrome.
Deb

Test for Lyme disease again. Those parasites can cause lesions and different kinds of havoc in your nervous system as well as visual problems. Stay off any antibiotics for a while before taking the test. Sometimes it shows a negative even when you have it. Im not a doctor but I read a lot.