All test normal? Can it be Neurosarcoid?? See Video links

[Brandi_johnson]

MY name is Brandi I and I am writing this entry from my hosptial bed in Dallas, TX.   I have been struggling since 2000 with bizarre neuro symptoms. I was also diagnosed in 2000 with Pulminary Sarcoid by biopsy.  I was sent to see Dr. Barney Stern at Emory in Altanta.  No finaly diagnosis was ,made but there was a suspicion of Neurosarcoid.  I have been getting worse and worse to the point of being admitted 5 days ago.  I am trying to NOT leave until we get a diagnosis so I can begin a treatment.  The problem is that all my tests are coming back normal.  I would love other doctor's thoughts.  

My symtoms are: Symptoms:
Neck and Joint Pain, Tremors –specifically on left side, Headache – severe , Legs are extremely spastic and don’t want to walk right, Heart pain( pain in chest area or heavy beating), Muscle cramping esp in legs and forearms, Feel like too tired to breathe (pain in breathing), Weakness extreme fatigue, MAJOR hair loss, Face flushes and I get way too hot and then cold. (temp regulation), Difficulty sleeping or too much sleeping, Blurry vision (sometimes seeing yellow blobs or wiggly things), Numbness in hands, Random stabbing pain in muscles (legs and arms), Fuzzy thoughts, Can’t find  my words , Pins and Needles around right eye, nose and side of mouth, Knots in and around rib and biceps (hurt to touch), Ears ringing or overly sensitive, Eyes overly sensitive(dry) and taste sometime diminished, Lip on right and side of nose gets numb, “electric shock” feeling in legs.

We have done CT and are waiting to do MRI w/contrast on brain and neck.  They have checked ACE levels and vitamin B.  Spinal Tap tomorrow.

Could it be Neuro if it doesn't show on MRI or labs?  How could we check? If you are reading this and are interested I would LOVE any thoughts. You cna reach me at brandi_johnson16***@****.  My doctors are great because I am at a teaching hospital and would love collaboration.  Click here to see what I looked like 3 weeks ago.

http://videoemail.vmdirect.com/view?uri=Mjk5OTA5Mi0wNi8xNi8wODoxMjo1NTowMA==&speed=553&players=flash%2Cquicktime%2Cmp4%2Cwindows

  And then click here to see me now.
http://www.statece.com/Realestate.aspx

HELP? Thoughts? I will continue to post as the results come in over the next few days. THANK YOU

[patsy10]

Brandi if you don't get an answer you might want to get tested for tick-borne disease like lyme. You may have already had this done.

[Wobbly]

Hi Brandi..I'm not a Dr...but I have seen this and know what you are going through.  

I myself have been going through a Dx process for the past 2 years.... for Neurosarcoid...the found granulomas in a Bone Marrow test I had a year ago when I was admitted into a hospital for two weeks to find out what is the matter??  

I don't see too many people in our situation with this disease?  and trying to get a Dx...quite afew of your symptoms...is exactly what I have and I'm waiting to get another MRI in July of my head...last one was 14 months ago, it showed lesions, but ??  no dx yet...

they say they don't want to do a brain biopsy...which is fine with me...boy I dont want to go there.  But, it's so difficult not havig a Dx so I could have treatment to help with this.  

I am getting worse by the month and feel soon that I will not be able to walk or be by myself as I fall over alot... I need some treatment soon..

Hope you feel better soon and get some answers...lets keep intouch and see how things go..

take care
andie