In Proccess of testing...My Story

[DarthMom]

I turn 30 on Friday, I am the Mom to 3 children all under 5 and my health has been a mystery since I was 18. I was finally diagnosed with fibro at 20 after all the blood and CT/MRI tests for crons lupus etc... I have been suffering with severe and chronic pain for 12 years. It is getting much much worse. I was an Air Traffic Controller. I fell down a flight of stairs in 04 and since then my life has taken a turn for the worse. I fought for a year to keep the career I had put so much into. I went out on disability with 4 herniated discs 2 cervical 3 lumbar. I have always had horrible low back pain, with some associated numbness and tingling mostly sciatic nerve pain. And some cervical neck pain due to my injury but I managed. But in late 08 that all changed...I started to get vertigo and an increase in migraines which were already bad enough. I also lost the use of my arms and it has gone downhill from there. A MRI in 09 found a syrinx at c2c3 and recent follow up MRIs have found No Flow blockage or tumors, but it is growing... But I am having facial numbness and my arm and hand numbness is worsening. After giving birth to my 3rd child I was unable to care for her, I began to drag my legs one morning it could be L or R but it would be completely numb and prickly. I have fallen while holding the baby. I bump into things a lot and am having some issues with vision, slurring words and hearing. My Neurosurgeon is sending me for a Brain MRI and a spinal Tap. I am scared and wondering what next!!!
Sorry so long!!! Thanks!!!

[figuerpa]

I am glad they are sending you for an MRI maybe that can give you some answers. I understand how you feel about people saying things that they just don't even understand.

Here is to hoping that they find out what is going on, this has to be very frustrating for you. I am grateful my kids were older when I started having symptoms. I couldn't imagine not being able to care for them and not have a clear reason as to why.

Sending good wishes your way,

Paula

[DarthMom]

yes the neurosurgeon, but his approach is do nothing figure all out and then see... which leaves me hanging in the wind on pain meds which don't touch anything, my mom telling me I have perscriptions for my habit... and nothing for the actual problems with not being able to wash my hair, brush or put it into a ponytail, do anything with my hands like write or type much.do my daughters hair, hold my baby!!!pick anythink up... walk much turn my neck... Migrains severe...coordination I run into thing constantly etc!

[DarthMom]

They should be soon, I am also in the chari groop because its between those to disorders and they mimic eachother and as I'm now finding out thanks to this lovely place many are misdiagnosed with MS for years prior to finding out what is really going on....also I may not have Fibro at all which is what I have always thought because everyone is different but I always fall in that .005% that is different...doesn't that always feel like its you...

[sllowe]

Hi there,

My my, just the initial problems from the fall are enough, let alone the secondary problems you have.  Who is treating you for the syrinx? The surgeon?

A lot of what you describe sounds like it can be related to that, along with existing back problems. But, I'm no doctor.

I'm so glad you are going in for new imaging and an LP. Tethering would not be good, and I hope that's not occurring.

When are your appts?
Hope to help you hold it together :) especially with 3 under 5.
-Shell

[DarthMom]

bump

[DarthMom]

I also suffer from severe anxiety Bi polar disorder and mild ocd. I have a very hard time some days getting out of bed...and if I hear one more moron say are you sure this isn't just a fibro flare up??? Um yeah I'm pretty darn sure... I'm being sent in for a thoracic MRI to see if there are more lesions or if there is any tethering in the cord. So here's to holding it together!!!