Home      Members List      Register Now!

Go Back   SB&H Forum > Spina Bifida Community > Connect with others

Reply
 
Thread Tools Display Modes
  #1  
Old 06-23-2007, 01:47 AM
Sundove Sundove is offline
Banned
 
Join Date: Jun 2007
Posts: 0
Default Never Diagnosed

Connected I am a 55 year old woman who has been suffering with lower back, hip, leg pain all her life. My mother gave birth to me, the last of nine children, at age 45.* Being poor the household diet left much to be desired.*I was born just after the two youngest before me died with diptheria. I was born into a grieving family. Being the age my mother was at time of my conception,*I wonder at the state of her overall*health.* Several years ago, I happened upon a specialist who was quite thorough who wondered if further investigation might be in order after she saw the patch of long dark hair at the base of my spine.* She mentions in her notes that she wondered if I may have been born with spina bifida (Occulta). I experienced all the problems in school listed in the symptoms, inability to concentrate, did very poorly in school, confusion with reading and comprihension, and math. I was overweight as a child, always puffy face.* I've always had pain and difficulty with running and walking, and bowel/bladder control to a minor degree.* I am now on disability with lower back/nerve/hip/leg weakness and flexability are a big problem. Where would I begin to find a doctor who would not laugh at me if I asked him to investigate this for me and help me to at least find a reason for all this pain all my life. It was so bad I never finished public school. I have a serious hypersensitivity to latex, and was diagnosed with severe Environmental Illness many year ago.* I cannot take prescription drugs, have had life threatening side effects but no one seems to believe me even tho it's been documented on medical files. Doctors get frustrated with me and just want to get rid of me.* I studied natural medicine for 15 yr. so that I could learn to help myself, and I have gotten myself thru all these years alone, depressed most of the time, and wondering what is wrong with me. Can anyone help me to find some answers thru proper diagnosis, and treatment?
Reply With Quote
  #2  
Old 07-03-2007, 05:11 AM
Debbie
Guest
 
Posts: n/a
Default Never Diagnosed

Connected Catwomen

Connected Hi Sundove-have you* been directed to see a neurosorgeon? I am not a Dr. but spina bifida occulta is characteristic with a tuff of hair or more. There are a lot of good neurosurgeons and a lot of A--h----s too! You really have to be an advocate for your own care and not go in and ask to see someone, but go in and tell them that you want an MRI done of your spine if not already done as this can give the neurosurgeon the best picture of your spine. You may very well have a tethered cord which means that the spinal cord is being pulled below where it should be, probably due to the Occulta Spina Bifida. What happens with this is that the nerves are affected and this is why for instance I have had 12 falls in the last year. Also discovered to have neuropathy (no sensation in my right foot, hammer toes but also bowel, bladder and even sexual problems. You deffinately need to be assessed by a neurosurgeon, and if you are not referred to one that gives you satisfaciton, get a referral to another one until you get one that is interested in your quality of life. I don't know about the inability to concentrate, I was much the same, but, medically I dont' know if this is connected or not, but interesting though as everything you had mentioned, i was not good at either, co-incidence perhaps. I have applied to disability, but haven't heard yet as to whether or not I am going to be elligle or not. Technically, I have had this since birth like you, but just now coming up with all the problems that go with it. I know that there is a connection between those with spina bifida and latex allergies. I really feel for you, because we have so much in common. YOU NEED TO GET TO YOUR PHYSICIAN AND HAVE THEM REFER YOU TO A NEUROSURGEON. Let me know how you make out. <STYLE type=text/css>

Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump



All times are GMT. The time now is 03:02 PM.


Powered by vBulletin®
Copyright ©2000 - 2017, Jelsoft Enterprises Ltd.