Neurology Community
No one will listen!
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This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.

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No one will listen!

In January 2009 I went to a doctor to get my headaches treated.  She ordered an MRI, only after we tried other options-including massage and counseling.  After she got the MRI results back, I had to call her to find out that there were a few spots that she wanted to check in a few months, she said it was either a tumor or a neurological dsorder.  That was it, no other explanation was given and she wouldn't return my calls.  Then August, I went and got another MRI as a follow up.  She never returned my calls to see the results.  After 2 months of failed communication from her office, I went and picked up a copy of my file and called a neurologist.  She got me in right aeay.  There she walked in and started talking treatment of MS.  She thought I knew and it was a complete shock!  All I knew about MS is that a coworker has it and he is in BAD shape-I was freaking out!  In three months, I went from one definite spot and 2 barely visable spots to 4 definite spots and 1 barely visible spot!  The neurologist then set up an appointment for me to get a spinal tap the following week.  The results of that and all blood work were negative.  She explained that it doesn't mean I do not have MS it means it is just not active.  She then said she has no other reason to see me!!!  So, I got a copy of my medical record from her and went to another neurologist.  He did brain wave tests, buble echocardiograms, and tons of bloodwork.  There was nothing noticable on any of these.  The brain wave test was inconclusive because I was unable to sleep through it so it messed the results.  The bubble was clear except for one thing but he said it was probably because of the machine.  There was also one blood test that came bak a little elecated.  He then put me on low dose aspirin and a pain reliver for the headaches.  I have not been back to see him in months-he keeps cancelling my appontments.  Below is a list of my symptoms.  I am in desperate need of help!!  I am not one to just sit back and let it happen, I want to be as proactive as possible.  If someone can help, I would forever be in your debt!  I will share my medical files with any neurolist who thinks they can help.

Severe headaches-daily, will not go away with 1600mg of ibuprofen or tylenol!

Memory loss-I have no childhood memories, i cannot remember a lot!  There are days when I can't remember if I took a shower!!  I have been diagnosed with OCD so I know I shower at 6 every morning, but I cant remember them!  There are days when I can't remember how to type-for a secretary, that is not good!

Numb legs-My legs go completely numb all the time, whether I am sitting or standing.  I also think that there is nerve damage, mostly in my left leg.  My feet are always cold so I have a space heater that I started using a few months ago.  I can sit my legs and feet in front of the heater and it takes forever for me to feel the heat.  However, when I look at my legs, they are all burned and at times, but they never hurt from the burns.  I know have scars on my legs because of that so I have stopped using the heater.  Also, when getting the reflex test done, my left leg won't "kick"

Spasms and cramps-I have a history of back and leg spasms, started when I was about 18.  I also get cramps in both that are debilitating and can last up to a day!  Have you ever tried to live with a groin cramp for a day?  Not fun at all!!!!

Exhaustion-I am always tired, more than the normal person.  It's not that I always want to sleep, it is that I am always too tired.  I consider myself active, married with two young children (7 and 9) but there are days whn I cannot force myself to get out of bed-my husband has to help me!  It is just pathetic!  I don't consider myself lazy but maybe I am, I just don't know!  I was told that it could be chronic exhaustion syndrome-is that even real?!!!

Here is some info that may or may not be relevant:  In my family, we have a very high risk of breast cancer (every female on both my maternal and paternal sides has has breast before they were 45).  There are members on my maternal side that cannot grow hair and the cause is unknow, we have members with no fingerprints (no reason as to why), then there are those that have extreme hair growth (me).  I have dark thick hair and it is excessive and always shedding, my poor drains!!  I have to keep it short because it adds to the headaches.  Also on my maternal side, we have a history of uterine and cervical cancers, abnormal (missing or excessive) menstrual cycles miscarriages, and early deaths of natural causes.

That is all I can think of right now, I don't have my list in front of me but any and all help will be appreciated, unless, you are telling me to wait-I can't do that anymore I need to know!
Tags: Neurology
3 Comments Post a Comment
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Avatar_f_tn
After talking to my husband-here are some things left out-disorientation (daily); what feels like static electric shocks inside my head followed almost simultaneously by a bright light in the back of my eyes; neck pain and eye pain all tied to the headache; I am also really unbalanced and clumsy.  This is all pretty frightening and all I want is answers!
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1224427_tn?1267060693
u say that you had an mri? was it with contrst? did u get the results of the mri? i have all of the same symptoms and mine are caused by a brain tumor in my pineal region which is hard to see without contrast.
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620923_tn?1393294254
I would suggest u get someone to review ur Brain MRI and also get one done of ur cervical spine....ther r sooooooo many conditions that can have the same symptoms....and many times people get mis dx'd...so until u have more tests done...and it sounds like u may need a diff dr.

Good luck

"selma"
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