Discussions By Condition: I cannot get a diagnosis.

Help!What is wrong with me?I feel so hopeless!

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: annstan
  • January 15, 2009
  • 06:15 AM

Hi ya'll! I am new here. Well, here goes...
I injured my shoulder at work and eventually had surgery on it. During surgery, I aspirated and ended up in the hospital for over a month with double pneumonia and the lower lobes of my lungs collasped. While there I suffered a light stroke, I expired and was revived(I never got anyone to say how long). I suffered an oxygen deprivation brain injury. While in the hospital all that time I was being given huge doses of ATB and cortisone IV. When I got out I had asthma, diabetes, all of my levels were off (thyroid, liver, kidney, etc). When I tried to walk my legs pumped? (like I was trying to push up with my legs...i do not really know how to explain). I couldn't walk and had to use a wheelchair for 8 years. My hair came out in huge clumps. Since then I have also had a staph infection on my foot, and spinal menningitis. I do not well in math(I use to LOVE math) and can not read and retain. I have lost some older memories and have a horrible time with new memories. I have to rely on my daughter on how to get to and from my husbands job, because i can not remember how. (new memory) I have "brain ****s" LOL! where names of objects will not come to my mind(this comes and goes). My family is use to me saying thingie, thing, that, ummmmm, etc A LOT! I have horrible pains in my legs, like charlie horses that lasts for days some times. I have instances that I try and reach for something and my arm ?dies? gives out and if I am holding something, it will crash to the floor. It comes back in seconds, and my legs and feet do this also. My thighs and upper arms are always cold to the touch, but I am burning up! I feel as though I am going to implode from the heat I feel. Sometimes, when I am hurting the worst, my face will be bright red and burn. If I get in the sun, my face will turn really red and burn and I will break out in little bumps where ever the sun shone on me. (I don't have to be in the sun for 15-20 minutes.) I get so hot on my hands and feet that I have to run ice cold water in the tub and just stand in the tub, and and put my hands and feet in the cold water for relief.
The docs are really treating symptoms, Flexeril for spasms, neurontin for restless leg and the weird sensations of water being poured on my legs, lisinopril for kidney function, amitriptyline for pain and sleep, darvocet for pain, insulin and pill for sugar(under control, yeah!). I am so disheartened and frustrated. I know I am blessed, don't get me wrong. I just think there should be a name to put with this torment and an end to it somehow! I can walk now, balance is still off sometimes, but I CAN WALK! I can read bits at a time, but if I want to remember it, I write it down or email myself! LOL! I have 2 special needs kids. 1 with Autism and bi-polar with psychotic episodes, ADHD, and OCD and 1 with Aspergers(a form of Autism), bi-polar with psy epi's too, seizure disorder, really bad foot problems, and glaucoma, so I have got to bring my A game, even if I feel like crap X's 10! After a while when you don't fit into a "textbook case" of whatever, it tends to get you down. Maybe what I even am asking for here is a moot point. I know what I REALLY want is sanity, pain-free days, a DX, a cure for Autism Oh! and world peace.
No, but really, if anyone hasn't went to sleep while reading this and can offer suggestions, a cure, a miracle, etc. Please feel free to respond. I will now email myself this forum and maybe I will remember to come here and see what you good folks have to offer. Thanks Annette

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4 Replies:

  • It sounds as though you have a couple of things going on. Some of what you describe sounds like an autoimmune problem, perhaps brought on by the infection you got in the hospital. The psych symptoms may be something genetic since they appear to affect several members of your family. There is something called chromosome 22q11 deletion that you may want to read about. Autoimmuine problems and behavioral issues are related to it. Try here: http://ghr.nlm.nih.gov/condition=22q112deletionsyndrome
    aquila 1,263 Replies
    • January 15, 2009
    • 05:22 PM
    • 0
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  • Depending on which state you live in, you may be able to sue for damages. Many states do not allow you to sue your employer, unfortunatey.Try EFT: www.emofree.com
    Monsterlove 2,921 Replies
    • January 15, 2009
    • 10:43 PM
    • 0
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  • A latent virus (ive forgotten which one it was now.. it could of been cytomegalovirus?? or HHV6A??) combining with certain genetics can end up causing conditions which look like autism and bipolar (major mood disorder and psych. issues) I was watching a doctors lecture on this the other day.. some groundbreaking research released.. If i can find the lecture again and remember this thread i'll provide a link................... Some research within the past 10 yrs also links autism to issues in the bodies methylation cycle. In children this methylation cycle issue can cause autism and if triggered in an adult it can cause chronic fatigue immunity dysfunction sydrome (CFIDS). (this is all current theories being followed up). Thou you havent got CFIDS, i mention this as there is a genetic component there to CFIDS and CFIDS people have are said to have damage to to hypothalamus/pituatory/adrenal pathway... this pathway controls most of the body from hormones to most other things. and damaging this one can get many of your symptoms. People with CFIDS (and as i said there is genetic component involved.. one which may also relate to autism).. are oxygen toxic. Oxygen more easily damages their system and hence they should be given it if needed at lower rates.. (info from Dr Cheney from his 2 part DVD series..famous CFS specialist). As I said you havent got CFIDS.. (umm i dont think?..thou it can cause similar issues to what you do have).. but think this genetic thing of genes, your oxygen damage and your children with with autism is interesting. I actually wonder if there is a link, if something within your own genes but also connected to your childrens issues, made you suspectable to the oxygen damage you suffered.
    taniaaust1 2,267 Replies
    • January 16, 2009
    • 05:07 AM
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  • What you had is essentially a stroke with many symptoms secondary to it.I'm really sorry for that.
    richard wayne2b 1,232 Replies
    • January 16, 2009
    • 03:16 PM
    • 0
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