Everyday Life With MS

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I Am Desparate for Feed Back


Hello All!
I am going crazy trying to figure out what is going on with me.

I recently changed neurologists because I wasn’t getting anywhere with my old neuro. The new Dr. ran lots of blood tests and ordered new MRIs.

Yesterday I had a consult with him and he told me my MRI hasn’t changed since my last one 3 years ago. He told me my symptoms do not correlate with my MRI and as a matter of fact, my MRI isn’t characteristic with MS.

He also tested me for other things like lupus, lyme disease, etc. but everything came back normal.

He told me that my symptoms are psycho-somatic, basically not real and that I have a deeper issue than the symptoms.

I am stunned. Has anyone else gone through this before? Is it possible for me to have symptoms but all tests come back negative?

As I write this, I am fatigued, some of my fingers don’t work like they should and I have tingling all down my right side.

Advice on where to turn now would be soooooo helpful.

Thanks
xo
Lora

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June 30, 2010 - Posted by | Everyday Life, Fatigue, multiple sclerosis, Relapses, Symptoms | , , , , , , , , , , , , , ,

4 Comments »

  1. Hi Lora,
    Wow, you must be shocked and frustrated. At the very least I would take everything you have (MRI’s, reports, etc.) and get one more opinion with an MS Specialist. I see you posted this in June and I am just finding your blog in August so maybe you’ve already done this.

    I have heard of people being misdiagnosed but it seems like with your medical history as posted here that something is going on.

    Have you been checked for NMO? Have you ever seen a chiropractor? These are the first things that popped into my head when I read this post. I’m just thinking chiropractor because you can have symptoms such as those you described in this post from a neck problem (but, you would not be having MS relapses from a neck injury, so this doesn’t seem likely.)

    Are you on DMD’s? The one thing that changed for me while taking Rebif is that my brain lesions disappeared. Everything else has remained exactly the same for the past 5 years.

    I am wondering what you meant when you said “I am getting nowhere with my current neuro.”

    If you are still in the Tampa area you should try the Tampa Neurology Group if you haven’t already. That is who I used when we lived there.

    Best wishes,
    Suzanne

    Comment by Suzanne | August 8, 2010 | Reply

  2. Well, from what I heard, not all MS lesions are visible in MRI scans… and it certainly isn’t the first time a stupid doctor thinks that MS is all in our heads.

    Good luck!

    Comment by Babette | January 13, 2011 | Reply

  3. Hi
    Have you ruled out vitamin B12 or D deficiency? MS doesn’t always show up on an MRI but no matter what you have a healthy diet is a food start. I have recently been diagnosed with MS and chose to treat it without drugs. I’m taking vitamins and eating gluten/dairy free. No msg,no artificial sweeteners… It may sound hard but after a few weeks I was symptom free and stronger by the day. I expect to live symptom free and healthier than ever! Good luck to you!

    Comment by Carol | August 15, 2011 | Reply

  4. One last note… Where to turn now… Find a holistic doctor. Have you blood, urine, hair and stool checked. The results may hold some answers.

    Comment by Carol | August 15, 2011 | Reply


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