Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Witsense writes: " Instead they decided I must have pseudotumor of the brain... causing increased intracranial pressure, but in their diagnostic Lumbar Puncture (big fun...not) surprise, surprise... no high opening pressure. " Not really my field but I'm not sure the normal (not high?) opening pressure completely rules out Pseudotumor. I assume you had a CT of the brain first and it was normal. With the increased discussion on antibiotic therapy for P/A, I assume, again, that you are not taking daily doses of any " cyclines " (tetracycline, minicine, etc.) as those drugs can precipitate an attack of pseudotumor in CERTAIN patients. Swollen optic nerves (papilledema) occur because of increased (not necessarily high)intracranial pressure. The CT would have ruled out any " space occupying " lesion (tumor, hemorrhage) and the appearance of the ventricles would have indicated whether there was increased cerebrospinal pressure despite the normal (not high?) opening pressure. The important point is don't blow it off. If you're not satisfied with this neurologist, find another one and bring your films. There has to be a cause and they need to find it. barry PS: If you don't mind, e-mail me privately with the final diagnosis (if there is one). I'm giving a lecture in two weeks and one of the cases is pseudotumor and I love throwing in anecdotal stuff. Good luck " Freedom of speech is wonderful - right up there with the freedom not to listen " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 Ok... sorry I left out so many details... it's been two years since all that noise. Yes, I had the CT scan = no malformations, no growths, etc, I also have controlled blood pressure = 120/70, normal cholesterol =180, no antibiotic therapies, and the biggest clue, no headaches, none for more than 3 months... first time in my life I had no menstrual migraines either. I honestly feel they jumped on this diagnosis because I am " morbidly obese. " I followed along, right through the lumbar puncture, that's where they lost me, they still insisted it must be psuedotumor. I was such a good patient back then I even took diamox for a while until I developed an allergy to sulfa and the doctors stopped it. Said it was " early psuedotumor " !!! I filed that diagnosis right next to the neurologist that insisted I had " early MS " even though he admitted I had the cleanest MRI he'd ever seen... " it was just a matter of time before it surfaced " I left telling him I'd call him when it did. A year later I was finally seen by a rheumatologist and diagnosed with PA... I've had psoriasis for 42 years. Let's just say I haven't been back to either ophthalmologist, or neurologist since. I have seen another neurologist after a car wreck, he acted like those other diagnoses just didn't exist. When I asked about them, he answered that he would rather deal with the herniated cervical disc that was compressing my spinal cord then worry about what someone thought I MIGHT get. I have left sided myopathy from the cord compression. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 In a message dated 04/01/2002 11:39:42 PM Eastern Standard Time, witsense@... writes: > . I > honestly feel they jumped on this diagnosis because I am " morbidly obese. " > I > followed along, right through the lumbar puncture, that's where they lost > me, > they still insisted it must be psuedotumor. Hi - I think I had the same problem years ago, although I guess I missed your original post. I've been " morbidly obese " (God, I hate that term) since childhood and am now 41. I had " psuedotumeris cerebri " (spelling?) when I was 16 which basically just means " false brain tumor " - The neurologists say it happens sometimes in overweight young women with irregular menstrual cycles but that's about all they knew about it then. Heavy duty steriods took the horrible headaches away. If I can tell you anything else about my experience with it - feel free to email me personally. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 , Great Information. Thanks..... has battled this before. Thank goodness has not had a second bout of it. So far the Dr said the Second bout would call for the shunt. Robbin **************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Sorry to hear of Clare's new possible problem. I can't improve info-wise on what sent but I do know of a girl through a friend who also has this. Her story is on a Caring page if you are interested in checking it out. Read the update now: http://www.carepages.com/carepages/Kailtyn/updates/1705184 <http://www.carepages.com/carepages/Kailtyn/updates/1705184> This will take you to her latest update and you can follow her whole saga by checking her past updates. I'll be keeping you in my thoughts and prayers, Michele ( 21, spondy) ________________________________ From: [mailto: ] On Behalf Of lauracmurphy5 Sent: Monday, September 08, 2008 8:11 PM Subject: pseudotumor Hi all.... Quick note as I am trying not to panic here....Clare started Humira 3 weeks ago and started having vision problems/severe eye pain/pressure this weekend. She was checked over by her opthamalogist today...nothing. I called her rheumy who said that it might be a pseudotumor. She went in for an MRI and blood work. No news yet. Anyone else gone through this???? Poor thing has just started high school and has been doing GREAT! Uggh. and I am going in for my last cancer treatment on Wednesday so am having my own fits. Thanks for being the ones that I know will listen and understand! xoxo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Hi, Has your daughter had her intracranial pressure tested? Our son Louis was elevated in the last year and has had to have LPs (lumbar punctures) to measure it and has had one LP to take off fluid on the brain. Our drs are still unclear what caused it but thought some combination of or reaction to meds. They also found swollen eye nerves and that left unchecked can affect vision, so that is good to check out too. Good luck. Jan and Louis, systemic, age 9 On Sep 9, 2008, at 7:42 AM, Tepper, Michele wrote: > Sorry to hear of Clare's new possible problem. I can't improve info- > wise > on what sent but I do know of a girl through a friend who also > has > this. Her story is on a Caring page if you are interested in > checking it > out. > > Read the update now: > http://www.carepages.com/carepages/Kailtyn/updates/1705184 > <http://www.carepages.com/carepages/Kailtyn/updates/1705184> > > This will take you to her latest update and you can follow her whole > saga by checking her past updates. > > I'll be keeping you in my thoughts and prayers, Michele ( 21, > spondy) > > ________________________________ > > From: [mailto: ] On > Behalf Of lauracmurphy5 > Sent: Monday, September 08, 2008 8:11 PM > > Subject: pseudotumor > > Hi all.... > > Quick note as I am trying not to panic here....Clare started Humira 3 > weeks ago and started having vision problems/severe eye pain/pressure > this weekend. She was checked over by her opthamalogist > today...nothing. I called her rheumy who said that it might be a > pseudotumor. She went in for an MRI and blood work. No news yet. > Anyone else gone through this???? Poor thing has just started high > school and has been doing GREAT! Uggh. and I am going in for my last > cancer treatment on Wednesday so am having my own fits. Thanks for > being the ones that I know will listen and understand! xoxo > > > Quote Link to comment Share on other sites More sharing options...
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