Possible MS

[misswriter]

I'm beyond frustrated. :(  I had a head and spine MRI two weeks ago and there is clearly a pea-size something on the head MRI scan but everyone is saying, its my fibromyalgia that is causing the problems. They are so wrong. I`ve had fibro since 2001 and never experienced anythign like this. In the past year, I`ve been told I`m having panic attacks, it`s PTSD and a variety of guesses. I`ve said it`s MS or something mimicing MS.

It all began in August 2011 with a "so called" parasite...they guessed. lol I've had two very defined time periods (Aug-Nov. 2011 and March-June 2012)with all the same issues and a few new ones added that scared the hell out of me.

muscle weakness-to the point where my leg turned to warm mush
extreme stiffness
vibrations in head and body
eyes balls hurt and feel like they are always jumping-Extreme left eye pain
severe headaches
shortness of breath
the feeling of being squeezed under my ribs
arms, legs pins and needles
extreme bouts of heat rushes-The only thing that helps is popsicles
stomach issues and pain
stabbing, ribbing pain in chest and stomach
trouble hearing at times
flashes of white light in my eyes. Eye sight has changes throughout all this.
blurred vision
lost bladder
lost bowels
trouble processing what a person says
strips of numbness that move all over the body
jaw pain
dizziness
trouble swallowing
trouble understanding what is said
Voice keeps coming and going-change in speech
feeling like I'm walking on a tilt.
These are just a few of what Ivè experienced.

Kim

[misswriter]

I forgot to mention I did see one specialist who honestly was useless. When I asked if he wanted to see my past test results he refused and told me he only would look at reports that had to do with my spine.  I asked my doctor to setup a new referral with someone else who is at least willing to listen to get the big picture.

[misswriter]

Thanks for the responses. I've had a lot of blood work done, Lupus was negative and I just pushed to be tested for Lyme.  Should have those results soon.

The problem I have now is I have little faith in doctors or the radiologist report since I've been mis-diagnosed in the past. I've gone through hell which has included 12 trips to the ER by ambulance during two major events.

I just got a copy of my MRI on cd to hopefully get a second opinon.

The mri report stated..."focal T2 and FLAIR hypersensitivity right matter seen in the right frontal lobe which is non-specfic"
and "major flow vents present...incidental note made of a right posterior frontto parietal developmental venous anomlay.

It's been a very scary past year and a half and I hope I finally get some answers. I find it interesting how much I've improved after the events, not saying I'm normal because I'm not. The vibrations in my head and body I swear are going to drive me crazy. lol

[kwarendorf]

Hi Kim - I'm sorry you are having a rough time of it. The diagnostic process can be long and frustrating.

Many of the symptoms you describe are typical of MS. Unfortunately they can be typical of many other things. The MacDonald Criteria is the 'standard' for MS diagnosis. It states that the lesions in the brain and c-spine have to appear in different places in the central nervous system and that they have to be of different ages. The finding of an single abnormality in your MRI doesn't mean you don't have MS, but it makes it unlikely that any doc is going to say with certainty that it is MS.

Are you seeing a neurologist that specializes in MS? Have you had all of the usual blood tests to rule out MS mimics, like Lyme disease?

Ask us lots of questions. We're not docs, but we have all been where you are :-)

Kyle

[fugue79]

I hope you push your doctors to further examine the spot that shows up (in your brain?) anything out of the ordinary should be carefully examined.  I'm going through similar right now, and since a year ago. My neuro found a single active lesion in my brain, but really isn't following up on it, so I know how you feel. I have to keep pushing my physicians to investigate. It isn't comfortable arguing with docs, but when you have neurological symptoms and some evidence of brain/spinal abnormality, you have to make them do THEIR job.  We are doing ours. If you don't get anywhere with your doctors, your insurance co might have a case management program. This is what I did. They assign a manager to your case. That person will communicate with everyone involved in your procedures. I hope this helps.  I hope you get the care you deserve.
Best
N