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  • New with Questions--VEP's & MRI *LONG*

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    Old 08-19-2004, 10:53 PM   #1
    dmclary's Avatar
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    New with Questions--VEP's & MRI *LONG*

    Hi name is Dana and I am new here. I have been dealing with symptoms for just under 2 years now. Well, not quite 2 years as I had a baby during the middle of it.'s how my story goes:

    Fall of 2002 had a pelvic laproscopic surgery dx'ed with Endometriosis. Within a month or so of that surgery, I began noticing clumsiness/weakness in my hands-particularly the right. Intention tremor then started. I noticed a lot of muscle stiffness and tightness mainly in my legs. Very vague, but hard to ignore.

    I did some reading and immediately suspected Fibromyalgia and went to my GP. She tested me for just about everything-ANA, thyroid, Lyme, Arthritis...all of that stuff. She did not think that I was the "typical" Fibromyalgia patient and sent me on my way. Later I called a Rheumatologist to get a second opinion. The leg problems were getting worse---affecting my gait, stairs were horrible--we then lived on the third story of an apartment complex. The rhemy drew blood and ran a repeat of the tests the GP had done in addition to some more. She couldn't come up with anything and said that I did not have Fibromyalgia. She did not do the 18-point tender test.

    I finally did some reading about the tremor and discovered it could be neurological in origin. I got an appointment with my first neuro, whom I will call Dr. Idiot. He at first felt strongly there was something wrong--the tremor had moved into my head, tongue, and legs, as well as both hands/arms. He labeled me with Ataxia and noted the spasticity, clonus, and hyperactive reflexes in my knees and ankles. He ordered blood work to rule out B-12 deficiency, Lyme, and Wilson's disease.

    My B-12 was low (198) and he said we didn't need to worry about it. The MRI was ordered w/out contrast and showed four lesions near the atria of the right lateral ventrical. He said there was nothing neurologically wrong with me and told my husband to take me to a psychiatrist immediately.

    A few months after that appointment I woke up to get outta bed one day and I fell. I had absolutely no strength in my left leg. My foot was dragging and I could only take a very slight step forward. It felt like my knee was ready to give out on me. Very painful. I went to my GP who recommended a cane and a second opinion. Very humbling using a cane at 23. I went to see the second neurologist. He instantly told me that he thought I needed to be seen by a psychiatrist for an underlying Anxiety disorder. He did a spinal MRI which came back normal and told me we would redo the brain MRI in one year. He sent me on my way without helping with any of my symptoms.

    I then kinda got pregnant. It was not expected. Hubby and I were over joyed, however, because during my pregnancy I started feeling so much better. My productivity was up my energy level was up. I wasn't 100% but I was MUCH better. We thought that whatever was bothering me before had maybe gone away.

    No such luck. About 6-weeks postpartum the tremor came back really bad. I started having really horrible leg cramps and spasms. I had problems with weakness in my right leg like I had with my left the year prior. A lot of the pain and discomfort came back to both legs. I feel like the Tin man walking around. There are cognitive problems, numbness in my right foot...bunch of crap...which, also included eye pain---especially with movement. I have noticed gradual blurriness but have gone to the eye doctor twice in the last year just to get my Rx checked. They said it was fine.

    I finally ended up going to an Opthalmologist who suggested we go see another neurologist. I went to see this neuro the 5th of this month. She is an MS specialist and soooo wonderful! She immediately brought up MS. She ordered a brain MRI, VEP's, and a spinal tap. She also did a TON of new bloodwork...9 tubes...I almost passed out!

    The brain MRI showed 3 definite lesions and 2 possible tiny ones. The VEP's showed abnormal latency in each eye (124/126milliseconds in left, 130/135ms in right). The last time I talked to the neuro on the phone she said that my first round of tests for the spinal tap--the part looking for the bands was clear, but the one checking the proteins had not come back yet. I go back to see her tomorrow.

    Has anyone else ever had similar VEP's??? Do these tests indicate that I have had Optic Neuritis? The VEP's definitely indicate that there is a problem, right??? Like, the neurologist can't come back with a "go see a shrink" comment now can she? She said she was going to stick with me, but having a hard time trusting the ole medical prof's right now!

    The MRI (I requested a copy for my own records) was compared to my initial MRI 1.5 years ago. The radiologist suggested that the pattern of the lesions was not typical of MS but MS could not be ruled out. It suggested that the lesions should have more of a dramatic change. I was reading on ***** that with MS it is quite common for lesions to stay the way they are---like a scar healing on your skin---once the scar is "old" it's not going to grow bigger or change much. Does anyone have an opinion on this?

    With the spinal tap is it possible to have the bands and not the proteins, or the proteins and not the bands?

    I don't know if I'll get any responses before tomorrow, I'm just kind of nervous. The neuro already said that we will keep MS on the back burner if my tests are non-conclusive and continue treating my symptoms...she started me on Soma's to help my legs and get a sleeping schedule in place...she's switching me to Baclofen after a month of the soma' well as physical therapy.

    Does anyone else out there have a similar story??? Thanks for letting me ramble. I guess maybe I just needed to vent a little. Well, a lot. Thanks.


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    Old 08-20-2004, 08:20 AM   #2
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    Re: Thanks for the input Chris!

    Hey Chris...

    Thanks for your ideas...I know that my thyroid has been tested in the past but it's always come back normal. I don't think all of the other hormone tests have been done. I betcha that I can get my OBGYN to do that bloodwork to at least get started on something.

    I had a very bad experience with an Osteopath awhile back...I don't know how many we even have in Idaho! But, this guy...Grrrr...

    Perhaps you can answer another question for me...I have read that thyroid can cause the tremor and a few other things I have...but, isn't it that with some people who have "normal" results---whether that be low-normal or high-normal---they are actually off and need to be treated??? I'm pretty sure that my mom has had thyroid problems. Graves disease? Is that thyroid???

    Thanks, Chris!

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