Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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mommies4 09/29/2013

HELLO EVERYONE !
I've not posted in some time.However I'm always reading here on DS.
My mind got to wondering yet again due to my IH that I now have had for 4 yrs. 3 yrs post LP Shunt.I DO NOT fall within the " normal " when it came to my DX of IH and I know that something is going on inside me,what well as most of us I'm still in search of that. IT I believe is a toss up of either MS or possible Lupus.. I'm now 12 yrs in , fighting the un known ! I've looked this up before and found it again.Cross matching my IH with other Immune Diseases to see if it was possible something else caused it.

So I wanted to share this with you today ...
Just a little FYI ...

http://www.patient.co.uk/health/idiopathic-intracranial-hypertension

After reading this it just makes me wonder if for myself it was SLE all along.
I see a Neurologist next Thur. and will be printing this out for him.Being tiered of running in circles for the last 12 yrs I just want answers !

Hoping for all to have a Pain Free Day !

Sophiasmom06 09/29/2013

yup.
print these too:
http://www.ncbi.nlm.nih.gov/pubmed/?term=22300830
http://www.ncbi.nlm.nih.gov/pubmed/?term=8608694
http://www.ncbi.nlm.nih.gov/pubmed/?term=18320479
http://www.ncbi.nlm.nih.gov/pubmed/?term=8528233
http://www.ncbi.nlm.nih.gov/pubmed/?term=12164424

http://www.ncbi.nlm.nih.gov/pubmed/?term=9626773
http://www.ncbi.nlm.nih.gov/pubmed/?term=16244770

magnatomamma 09/30/2013

Would you recommend talking to the Sleep Clinic about these issues before a sleep study? I had my overnight monitoring last week. My second night is scheduled for next week if deemed necessary.

Sophiasmom06 09/30/2013

I don't think it would make any difference. it's not like I would think that if you had lupus that it would make OSA any less likely. in fact, my ANA goes negative every time I use PAP therapy. then it goes positive again when I stop. almost as if, the OSA is triggering the immune problem that causes lupus. my aunt had lupus. she died at age 66, IN HER SLEEP.

so you don't have results yet?

magnatomamma 10/01/2013

I do not have my results yet. They said at least 10 days. I will know before my next test on the 8th I suppose!

I had my first Lupus tests about 13 years ago and they were negative, but borderline. I was having terrible back pain at the time. I was tested again when I first got sick with IIH and was in the hospital. I was told they were negative. My PCP would probably be more interested in this information than my neuro.

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