dear all i need some help,

i am virtually on the point of topping myself due to the pain i have in my head and spine and my seizures. i have been diagnosed with lupus but my rheumie thinks it is only mild and something else i sgoing on i have had terible headaches for the last two years now they are unbearable. er nvere take me seriously always saying it tis chronic. i also have had a pain just above my left kidney. My rheumie is concerned this is infevtion or something to do with my adrenal gland. i have been on antibiotics a lot pain is still there on left. i have lost weight and have anemia they also found some inflammtion in my spine. i have a 1 and half cm cist in the pineal glandwhich has been there since i was illl but not there before that it has shrunk a couple of times. i have been recently diagnosedwith complex patiel seizures that turn into tonic seizures. these seizures have been terrible for the last week. i was put on keppra but did not work. i have been loosing on and off the sight at the sides of my eyes at night. i just can't tolerate the pain. My doctor has just put me on aclivor as i have some sores around my anus and on my face. but the ones i had on my face i thought were down to lupus or very bad acne. im due to see neuro as an outpatient but can't seem to find neuro that listens. the steriods were flaring up my symptons worse. i have had the follwing opinion recently from my specialist.1. i have infection.2. there may be a probelm with my adrenal gland. a dotor i saw six months ago thought my symptons could be caused my a tumor here but i did not follow it up as i was under the impression i had lupus. im sooooo scared i can't take the pain the seizures etc. my thoughts are that the pain travels from renal adrenal area up the spine to the brain. im scared this is either infection virus herpes or that ihave some kind of tumor that has metasised. please someone guide me what to do i can't take this pain.


zoe

Just what type of docs are you currently seeing or have seen in the past?what types of testing have you actually had done?any MRIs MRAs done on your brain and c and t spine?tho it is possible i suppose,i have a feeling that the 'kidney" pain and whats going on inside of your brain are not possibly related in anyway and may be totally seperate issues.its very easy to lump all signs and symptoms together when you have a particular issue going on,but many times,they are totally different issues and should at the very least,be looked into that way.do you know what i mean?while they all 'could' be related,they may not be.

knowing what types of testing you have had done would really help,along with knowing what types of docs you have seen.i cannot believe they are just leaving your severe head pain basically untreated.thats just plain cruel.i know what severe head pain feels like i in my opinion its in humane to let you go on this way,really.with all the different meds availiable out there today,you would thinkthey could at least Rx you something specifically for headaches.i hoestly would demand they do SOMETHING for you.you DO have a right to have your pain approriately treated andto not have to keep suffering here til they decide whatever it is you actually have going on.

some sort of anti migrane med may help.this just reduces the enlargement of the blood vessels withinthe brain which can cause some pretty horrendous head pain.this is what triggers migrane.these would at least be worth a try anyway.as a last resort,there is also narcotic relief,but the others should probably be tried first as they are geared for headache pain and really do work so much better than even some of the strongest narcotics.hopefuly someone will take notice that you are truely suffering here and need some pretty desperate help.you could always go to the ER too when things are just too much to bare.you deserve to have this pain treated,really.keep me posted.if you could answer my questions it would really help.Marcia

Keep getting second opinons and going to different doctors if you have to or go the ER as suggested. You have the right to get what is needed done for you and to be able to get your pain undercontrol.. after all, you are paying THEM. I agree with feelbad. If you haven't had other tests done ask or demand that more be done. MRI and MRA of the Neck, Head and T-spine would be good for starters, but ask what else could be done to help rule things out, you could have many things going on with you, and more than one doc should be managing your case to see what else is gonig on with you. Find some good docs that will work with you and be sure to tell them upon the meeting all of what you are going through and all your concerns. Have them look at everything... Get ultrasounds of your abd and pelvis, have them look at cardio if you feel that might be related...
There are all kinds of test like EKG, EEG, Spinal Tap, Ultrasounds, Cat Scans... just so many things I don't know what would be specfic for your needs, but you can always ask if they can be done to see what is going on. Looking at more labs as well would be good too. You could even have them rule out things like cancer. I'm not saying this to scare you, but so that you can cover all your bases and narrow down what it could possibly be. Good luck to you and God Bless, keep us posted and hang in there, my prayers are with you.