Normal mri w progressive symptoms

[curious neuro patient]

I was referred to a neurologist in 2001 after experiencing tremor in both thumbs/hands, sudden onset of blurred vision in one eye, and balance problems.  Neuro exam found gait ataxia, tremor, left hand weakness, and optic neuritis. He ordered mri, veps, and emg to rule out MS or MG.  All tests came back normal. I declined LP.  DX: Essential tremor.

In 2002 routine trip to optometrist revealed a small blind spot in field of vision test.  He sent me back to neurologist.  An ocular MRI came back normal.  

In 2003 I had frequent falling episodes during pregnancy - after pregnancy I began seeing bright flashes of light at the edge of my field of vision, triggered by sound.  Neuro noted loss of sensation on shins in addition to previous symptoms.  No further testing was done, dx of essential tremor remained.

In 2006 went back to neuro again after another round of frequent falls, difficulty walking in extreme heat (100 plus temps), fatigue, cognitive issues and noticeable atrophy of left hand muscles. Neuro ordered cervical spine MRI, again normal. Dx of essential tremor remains.

In the past few months I've now had several episodes of difficulty w/bladder & bowel issues.  My question: my neuro won't dx MS with normal mri.

I know a small percentage of people have ms w/normal mris... but other doctors dismiss this.  I know ET can cause symptoms other than tremor, but atrophy and visual probs are not among them.

I would like a doctor to comment.

[numbinGA]

I went for 2nd opinion today, he said "I do not know exactly what is wrong", but it could be transverse mialitis.  He going to run a full spinal MRI and more blood work.  He says a virus can cause transverse mialitis.  So anyway I will keep you up to date on what he says.

[lisa wood]

I just got back from the doctors office and he did some of the neuro tests on me and said that I have MS. He does not care if my tests were negative in the past or if my tests continue to be negative. He said that I need to see my neurologist that I went to in 2004 (which I liked) and he hopes that he will treat me for MS. My doctor said that he wished he could treat me because he would. He also said that he could put me in the hospital and make them treat me but I told him I would rather not do that because my grandmothers 80th birthday party is this weekend and I would not miss that for the world. So I am going to go back through all of the tests again.

[RNRita]

Is it me or has this forum shut down?  I see no questions since August and no place to post a question.  Am I missing something?

[curious neuro patient]

I declined the LP several years ago, because I had gone through the gamut of mris, veps, nerve conduction, etc. all normal.  It seemed very invasive and I did not want to risk a side effect that might put me out of commission for a few days.  Since my signs and symptoms continue to worsen, it is something I would likely consider now.  I've had several more mris over the past few years... I will likely seek a second opinion and if an LP is suggested again, cooperate.

[lisa wood]

I have a doctor's appointment with my primary doctor in the morning so he can refer me to a neurologist so I can through the tests again but I refuse to get another spinal tap done because they had such a terrible time getting the spinal fluid out. They had me under an xray machine on a tilted table and it took them 45 min just to get 6cc out of me. They told me that they were not going to make me suffer any more and that 6cc was going to have to be enough. I have had very bad experiences with the spinal taps. I really like my primary doctor because he does not treat me as just another number-he sincerely cares about his patients. I will let you know how I make out.

[patsy10]

Somatosensory is evoked potentials of your entire body.  They put electrodes all over and shows the speed of impulses from your toes to your brain, literally everywhere. So if there is a problem anywhere it shows up.  I think your testing is too old and needs to be repeated.  I may have been tested once for epstein barr.  Don't remember results.  I've seen 6 neuro's including an MS specialist.  None think it's MS.  I would like to be tested for all kinds of viruses.  I've gotten the FMS/CFS diagnosis as well.  I've also gotten the "it's all in your head" diagnosis.  I occasionally have swollen lymph nodes.  Read my post above to "numb in GA".  It gives a brief history of my symptoms.  There is a girl who posts here called "plateletgal".  She knows a lot about CFS.  You may want to post on the pt. to pt. neuro forum and she may give you some insight.  I think you have way too much going on for it to be just CFS.