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...
I hope things get better for you.
I am so sorry to hear you are going through such a difficult time. I do not have a lot of advice to offer but just wanted to say how sad I am to see you in this situation.
Make sure disability knows that you cannot currently afford to see your doctors regularly. They know that some cannot - if you have already filed, call the office and have them note on your file your current situation and why.
I am thinking of you and wishing you well.
:) Mandy
Do you qualify for the type of medical coverage that social services offer? In my state, those on Social Security disability get the same medical coverage as those who get it through Social Services.
One last thing. I heard there are programs out there that help people pay for medications. Here's a link to one of them...
http://psychcentral.com/lib/2007/financial-help-with-medications/
Your family is in my prayers...best wishes to you.
I do have one suggestion: The NORDIC clinical trials are still accepting new patients. This is a study of Diamox dosing, so your Diamox would be free and you'd get as much as you can handle (presuming you don't get the placebo). Information is at: http://tinyurl.com/8dok8s4
I, too, have been trying to get SSD and I'm not getting anywhere because (a) I need help filling out the endless packets of forms; I can't make sense out of the questions they're asking; (b) this isn't the stage of the game my lawyer will help me with; and (c) I can't afford a visit to the doc let alone my meds, so SSA considers me non-compliant and not serious about getting help. I have one last hope for a highly-specialized job that I think I can do, so right now I'm hoping that works out.
This isn't intended to be about ME, but to comfort you that you are not alone in this. I truly understand what you're going through. You are in my thoughts and prayers. Something HAS to give for us, my sister. It just can't go on like this forever!