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Dalia

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Ok hi all i just went to my neuro and after hearing my symptoms he think that i have secondry peusedotumor do taking roaccutane and cortisone at the same time bc i had almost all the symptoms and my mri mrv is clear but he is confused bc i dont have papilledema and he said this must be the main symptom so he doesnt want to do a spinal tab pressure reading! What should i do i read a lots of articles that some ppl dont get papilledema with this disease . I need advice dont know where to go now.
 
Hi Dalia --

Sounds like it may be worth seeking a second or third opinion if your neurologist is reluctant to do the testing to rule in/out pseudotumor cerebri (also called idiopathic intracranial hypertension or IIH. We had another CWE member who was diagnosed with the same thing, but it took a long time to get things sorted out.

You might want to check out these threads:
http://www.coping-with-epilepsy.com...h-idiopathic-intercranial-hypertension-11306/
http://www.coping-with-epilepsy.com/forums/f23/diagnosis-marathon-12624/

As well as this FaceBook support page
http://www.facebook.com/pages/Idiopathic-Intracranial-Hypertension-Support-Group/101921703205703
 
Hello nakamova sorry im late i was so sick i finally did the spinal tab thing and guess what my pressure is normal so my neuro think im crazy im really sick i have 24 hour headache with nausea abd fatigue and this weard feeling in my stomach im very sensetive to ligh and im 24 hour derealization i will wake up in the mid of night with this strange fear feeling for no reason god im tired dont know what to do next .lately i wad massging my neck and i descover a huge lumb like small lemon size its between my neck and head its not a lymph node its very hard and not painfull but when i press on it the headache get more painfull i dont know if this could be related or can causr seizure i guess its pressing on some nerves anyone can help please?
 
Sounds like you're having a rough time. I wouldn't waste any time getting the lump checked out because it could be part of what is troubling you. I would be inclined also to look for a neurologist that takes you seriously. It is not funny when the people that are responsible for your health and wellbeing won't acknowledge your symptoms. I really hope you start to feel better soon.
 
I agree -- start fresh with another neurologist, let him/her know about all the symptoms you're experiencing.
 
Hi sandie yes im having very hard time no one is listening to me even my close friend think its all in my head its really painfull physiclly and imotionly when no one beleave you some times i wish that i had cancer so they can take me serously and beleave my pain at least ill know whats wrong to me and get the proper treatment and ill know my way i pray day and night for a cure my kids are suffering bc in so sick and this make me mor depressed if i dont have kids ill go for suicide but i dont want to hurt them im sorry this is so hopeless but i need to share my feeling with you guys .thank i god bless you
 
Thanx nakavoma you always reply to my posts thaks for caring ill let you know if anything new bc i dont really know what to do next i dont trust doctors any more if your labs an scans doesnt show nothing you ill be ignored and treated like crazy thats how it goes in the country i live in im in the middle east i wish i have money i would fly to the usa or uroupe to get a diagnose to my condition . Thanx and god bless
 
I don't know exactly what you are going thru, but just try to keep your head positive!! You are in pain but things will start becoming brighter. Not sure when, and people do not understand the pain you may be going thru, but you do and its real, There are so many people here to help! Just think happy thoughts and try to remind yourself that you WILL get thru this!!! :) You are in my thoughts and prayers!!! Take care Dalia!!! :)
 
Thanx bridge for your nice and comforting words i really need someone to just beleave me i wish things get better soon for every one who is suffering ill keep posting here and i would like to have friends who really listen to me and im getting comfort with every word you are replying to me guys sorry about my spelling my english is my second language god bless you.
 
Dear dear Dalia, WE all believe you and I am so sorry that you cannot get the attention that you need. Take comfort in your children. You are NOT neglecting them and they understand more than you give them credit for. Try not to be superwoman and allow yourself to be less than perfect. Your children love you no matter what and you need to allow them to help you if they are old enough. I hope that you can find someone professional that can help you soon. If you cannot get a neurologist start with a doctor. You may have to see more than one if you cannot get them to understand. A psychologist may be a good start for you also because they are likely to at least understand that you are very troubled by this and may be able to refer you to someone that can help you. Do keep trying Dalia. You do need to be diagnosed for your own peace of mind. May there be sunshine smiling down on you soon.
 
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