Need some feedback. Very lost.

[lilmiss1999]

My symptoms have changed a bit in the last 4 months and I am trying to find out where to go from here. Mainly I need to know if I still need to peruse CM or if maybe my symptoms could mean something else. O also posted this on another forum just looking for some information.

Things all started bad in late 2009. I have a lot of neurological issues that seem to come and go. The last episode lasted for a little over a week. My top symptoms are below. The muscle and bowel issues are increasing with each episode and I am very frustrated with my health overall.

I am 37 and have always been healthy. Frustration with myself and drs is a nice way of putting it. Of course Drs are doing nothing and right now I am still working on getting insurance coverage.

Any feedback is very welcome. Thank you all for your time and hoping you all have a good day.

Jennifer


*****Short list of the most bothersome symptoms I have been experiencing.****

Pressure headaches on a regular basis that become excruciating during my “episodes”

Tremors now in my hands, arms and legs hard to walk down stairs because of the shakiness

Increasing visual disturbances (black shadows, flickering eyes, flashes of light, etc)

Loss of muscle tone and strength

Loss of time. Someone talking to me and they say I look at them but have no recollection of the question or conversation

Memory issues. Short term. Have to keep notes in order to get things done. Trouble remembering even little things

Dizziness, vertigo (with balance issues) and brain fog

Twitching and spasms in legs, arms (makes it almost impossible to sleep because of the discomfort.) wake up with arms or more often in legs with muscles so sore like I worked out too long. Also twitching in the private area

Numbness and tingling in face and tongue

Burning and dull ache in my neck, shoulders and arms. Feels like I pulled every muscle from my head to middle of my back but I have full movement

Extreme fatigue and exhaustion

Urinary incontinence

Bowel problems (inability to go when I feel like I need to)

Tightness in chest, shortness of breath

Throat feels thick and sometimes hard to swallow along with loss of gag reflex that comes and goes

[selmaS]

  My concern is the Dr iu sent ur info to may not be a true chiari specialist....

Have u had the CINE MRI to see if u have an obstruction of CSF?

I know what u r looking for and I do feel u should push for answers.

  This part of the chiari journey is the toughest bcuz we feel so lost and alone with in the medical system....

  Hang in there

   "selma"

[lilmiss1999]

Selma,

My Mri was in early 2010. CM was not noted on it but found later. Drs still dont think it is causing my issues. Did send to specialist in Washington. Got a "sorry but cant help you" letter back.

I understand no one here is a dr. I have been on here for a while.

Just though I would throw my stuff out there again since there are some new people on here.

I am just frustrated and hoping for some suggestions is all

Thank you.

[selmaS]

  Hi...well since we r not Drs and u can not tell by symptoms alone, I would pursue CM if u have a MRI that gives u a Chiari dx.

Ur symptoms r similar to those that Chiarians do deal with....but, there r many conditions with many of the very same symptoms.

Depending on when ur last MRI was, u may want to have another to compare...and see a true chiari specialist to get a better idea as to how ur chiari is affecting ur overall health.

    "selma"