Sending this to a NL Doc...online and I hope he can figure out what is actually going on. At least, a lead me in the right direction.
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Dear Doc,
I am worried that my current pain...i have been having is heading to an anuerysm. I have been diagnosed with an Anomally...an AVM by a NL and he said that i was probably born with it, but why does it hurt? They found the AVM while i was searching for what has been causing all of my neurological problems back in '08. I have been in utter agony for 6yrs. and the docs can't find what is causing all of my problems and pain.They have dx'd me with fibro, CM, AVM, Spondylosis, Adrenal Insufficiency, T3-T4 compressed fracture, T8-T11 herniated disk with hypertropy, but i know, something is seriously wrong...they are not finding.
I throb, burn and ache where the AVM is and it feels like someone has their hand back there pulling my hair every once in a while. My head doesn't feel right...it feels strained...and i pray it isn't a problem there, but since i am having memory problems, vision problems spelling backward and personality changes...it is making me think again. I am also...having problems to where i can't lay on the left side where it is located. The NL said it was in the left cerebullar hemisphere. There also is an "empty sella" there too, from what it says on my records and a chiari malformation also(6.5mm), but they changed it on my records to Tonsilar Ectopia. I was also dx'd with a Mastoid effusion back in '06, but i still don't know what that is and wonder why i was never treated for it.
Could this be vascular in nature? I was dx'd with Migraine back in '10, but only have a migraine maybe once or twice a month. I did get real angry one day...which, is not me and i yelled out.."Why isn't anyone listening to me or anyone believing me?!" After...or while i was hollering...i had a sharp pain shoot through my head like a bolt of lightening and the pain was excruciating. I had that pain for about 30min. and i had curled up in almost a fetal position and fell asleep. I was praying the whole time. When, i woke up...i still felt the pain, but it felt like it was deep in my head and not strong as it was,
I have had 15 or more MRI's and 2 CT's...BUT no MRA or Angiogram. I haven'I had any venous testing. i have had no lumbar puncture either, but i am afraid of that one, because i know someone who literally died from one.
My symptoms are a long list...and these are some of them. Here are the ones that i can remember and really stand out the most. Extreme leg pain(especially behind the knee and my Ankles feel shackled often) I can't stand or sit long at all. Standing my legs give way and sitting, i go numb. Oh the TREMORS and the jerking fingers..I feel like, I am in an earthquake..my body constantly shakes inside. It is sometimes visible when it hits my arm. Also, I experience extreme fatigue and sometimes can barely keep my eyes open. I was wondering about something concerning my eyes...by the way. I went through a time...where i kept only my left eye closed and am curious why i did that.
Just my right ear will ring and does it a lot.(tintenous) I hear it all the time and it stays with me really, for when it is quiet it gets too loud ringing. I always listen to music or something always. I have involuntary muscle movements and no one has told me where they are originating from and they are scary and aggravating. My fingers have a mind of their own. Pains are all over and they strike like burning(i am talking sheets of fire), itching, aching like flu, cramping(they are everywhere,even in neck and it is like a balled up knot-painful!), the back of the neck feels strained and stiff, lower jaw- i been told the Condyle bone is deteriorating by an Orthodontic surgeon. I get sore muscles often for doing absolutely nothing and i don't have to be doing anything to hurt, My left hand is weaker and sometimes, i can barely make a fist or use it because it feels so weird, from being weak. It scares me, because i know there has to be a reason for all of this. The more i use my muscles...the worse they hurt. I hurt in my arm muscle, rubbing my neck knot...ughh. :P
Also, i have some kind of lung infection and have problem with my bladder. I have to take Lasix, because i am retaining fluid some way.I have spasms and have had some severe pain there too.
I want to mention that i went through a time where i was broke out all over my face and didn't know what in the world had caused it.
U can see where i had places all over my face, when i was taking the Lyrica, but as u can see from the recent pic at top...all of it has gone. So, was it the Lyrica or is it connected to what is wrong with me?
When, I went to the Endocrinologist...he told me at first, he thought it was Addison's disease and he put me on Hydrocortisone, but later when I went back for more tests...he said it could most likely be Cushing's and that frightened me. I have hormone issues(hysterectomy in '99) and was found to be Adrenal insufficient in '12...which has been an absolute nightmare and still taking the Hydrocortisone for it. I have electrical/crawling feelings, blurry/double vision and eye pain, my memory is non-existent and can barely get through a sentence without forgetting.. etc...so much more i deal with...ughh like spelling words backward or twice in a row. I have wondered if it could be my medicines, but i don't know what to do..i am in misery, but getting no where. Frustrated... with no answers.
I feel like i have already had some kind of bleed, in my brain...because of these things that have happened to me. I was in a car accident in '95. I hit my head on the roof of the car and sustained a minor headache from it, but was going out and when it happened...i just wanted to go home, i felt bad. Could i have a slow bleed all this time. I wonder, because i never had headaches before and ever since the wreck..i have had problems. Had an ACD & F Spinal diskectomy in '06 C5-C6. They called it a ruptured petrusion. I have also had a bone spur removed from my left jaw in '89
I stay numb all the time..on the left side of my face and will have pins/needles even in the corner of my mouth and down my throat. It feels like a dentist has given me literal novacane...that is how numb it feels It is no fun or picnic. I have been paralyzed on the whole left side of my body before and MS came to mind. I had just got out of the bath and felt funny, my legs felt like sharped sticks and my feet were like sponges, but had to lay down my heart was beating so fast. I couldn't move my left arm or leg at all. I called 911 and the EMT's said they thought it was an analgesic effect, from the Fentanyl patch that i wearing, but i dis-agree...i feel there is far more wrong here. Also taking, Norco for breakthrough, Gabapentin for nerve damage, lasix, prilosec for ulcer, xanax for spasms/tremors, but i am very cautious with this one. I even break it into small pieces when i take it. I wish, i could flush all of them, i hate having to take them.
IF...u can tell me something that i need to do...tell me. I can't even touch the back of my head..where the AVM is! I just want to be well again and me, but can't seem to get there. I do smoke cigarettes and i am trying to quit, but is very hard when i this sick. It is the hardest thing that i have ever tried to do and i am a very strong individual. I look like a very fragile person, but looks can be deceiving. I am stuck in bed on most a daily regimen and i am too young and so much of a working person, to be stuck in bed. I am feeling overwhelmed. Help me please...So worried that i am going to have an anuerysm or something.
Ps. Just a couple of questions i had for u. Can vascular problems produce a severe pain like this or do they only produce pain behind an eye? Are sinuses or muscle/tissue/nerve damage more likely...since i was struck with a nerve block, in my thoracic...back in Dec.'06 and my problems seem to skyrocket after that happened. It does sound like my AVM could be having problems though. Could I have Trigeminal neuralgia? I want to say that i do have something going on up there in my head, because i am not me and sometimes, the pain can be unbearable. ehI have read where they do produce these pressure sensations? I am just so sick of being sick...is all. I hope this is understandable to u...because i was half asleep when i wrote it and can barely keep my eyes open. I am really scared of this and mighty weary about it. Sorry, this was so long, but i needed to tell u as much as i can about this situation. I believe this could be a serious issue...and i know, i just want someone to point me in the right direction...to help me get my life back..if, possible. Thank u...Karen( if, i wrote this already..and it feels like i have already written my name and closed out convo, but that is how my brain is doing. Is it my brain with all the problems that is causing all of this?)
HERE IS A LINK...TO THE 24 PAGES OF SUFFERING I TURNED IN TO MED HELP AND I STARTED WRITING BACK IN '09. I EVEN STARTED THIS SITE THEN...BECAUSE I WAS IN TOO MUCH PAIN, SCARED AND WANTED TO KNOW, IF THERE WERE ANYONE ELSE HURTING LIKE ME. http://www.medhelp.org/user_posts/list/667923?personal_page_id=292194
THERE IS A LOT OF INFORMATION, IN THOSE PAGES AND ALL OF IT IS WHERE I WAS SUFFERING AND WOULD JUST WRITE DOWN MY SYMPTOMS LIKE SOME KIND OF TRACKING OF WHAT I AM GOING THROUGH. IT FELT THERAPUTIC TO ME AND HELPED ME TO TALK IT OUT.
GOD BLESS U GUYS...AND FROM MY PERSPECTIVE...WE ALL SHOULD BE GRATEFUL FOR EVERYTHING WE HAVE...INCLUDING THE BREATH WE TAKE.
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