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Posted 12/30/2009 8:01 PM (GMT 0)
Hi there,

I am here with some questions and seeking some advice.

I am a 32 yr old female.

who went to the Dr 3 years ago with blindness in my Lt eye. I was tested for MS with a MRI scan w/wo contrast. VEP test and some blood work. All came back fine with no signs of MS at all. I suffer from 4 or 5 "attacks" a year and so I was Dx Fibro.

I went to the dr the other day Due to the same eye problems and weakness. also have numbess. He sent me to a Neuro Hospital. The Neuro there looked at me and said she along with another Dr there belives its MS. So back to the drawling board.

Geuss all the clinical tests they gave me showed all signs of MS she said plus she looked into my Lt eye and said my Optic Nerve was pale (atypical) ??? So another VEP tests got ordered. (wont get in for that till mid jan) I had another MRI done W/Wo contrast came back clean. nothing that shows any signs of MS. They re did all the clinical tests in office yesterday another Dr cam in and did them and said MS. They ordered a LP I said NO! (scared!) So They ordered blood tests for everything even Lyme. Also a Nerve conductiion test because I have 3 to 4 clicks of tonus in both feet and legs. Also get shooting pains weakness and tingling numbness in legs and feet. Feet sometimes burn bad and or can feel like I am walking on glass.

I get twitches all over my body. I could go on and on I even have the thing when I put my chin down and it feels like an electric curent going down the back of my head and neck into my body.

Ok...

So what do you think so far?

Can I have MS and have a clean "normal" MRI? How comon is that? To find MS in the spinal fluid but nothing shows on mri?

Thanks for your time..

Its been a long 3 years and I just want to know whats going on.

 

Posted 12/31/2009 8:49 PM (GMT 0)
Hi Jessa,

My brain MRIs are clean, but I have a lot of symptoms. I will be having a spinal MRI plus a lumbar puncture next Tuesday. I have tested positive on a Lyme ELISA....waiting for results from Western Blot tests. Here is a link to the formal diagnostic criteria (McDonald criteria) for MS:

en.wikipedia.org/wiki/McDonald_criteria

I may be wrong, but it seems to say that you can be diagnosed without lesions on MRI (clinical diagnosis)...??

Anyone have any comments on this?

JoAnn
Posted 12/31/2009 9:18 PM (GMT 0)
To clarify my question about the McDonald criteria, what is a clinical lesion?

For example, I was telling a neurologist about my vertical double vision. He told me to tilt my head to the left, then to the right, and asked me if it made a difference. The double vision improved (but did not go away) when I tilted my head to the right. He noted that I tend to tilt my head to the right all of the time (probably compensating) and said that it indicated "4th nerve involvement". Is that a "clinical lesion"?

Thanks,
JoAnn
Posted 1/1/2010 2:40 AM (GMT 0)
JpAnne,

I believe what you are reading is "objective clinical lesion."  That does in fact, mean a lesion detected on an MRI.  Objective meaning not subjective.  MS is a hard one since a truly postive MS lesion is only found post-mortem ( or brain biopsy which doctors won't do unless they suspect cancer).  Lesions can be caused by many, many things.  So even if you have lesions, you usually won't get an MS diagnosis if you have any other reason for those lesions.  The fact that you have tested positive for Lyme Disease will make it harder for your doctors to diagnose you.  Many will not give a diagnosis of MS when Lyme disease is present because it can explain lesions and many symptoms.  MS is indeed a diagnosis of exclusion and the doctors would have to be able to exclude Lyme disease as a reason for lesions and symptoms.  This is complicated even more if the lyme disease has not been treated. 

If you have no lesions, it is even harder to get a diagnosis.  MS is just not a well understood disease as of yet.  We have come a long way in the medical world but we have a long way to go.

Jessa,

Wow!  You truly present the classic MS symptoms.  Your electric shock when you put your chin down is called L'Hermittes syndrome.  It is often a sign of MS.  So is the Optic Neuritis.  The fact that your optic nerve is visibly pale is quite typical as well.  I know your brain is not showing lesions, but hopefully they got a good look at your optic nerve in that MRI.  The inflammation of your optic nerve can sometimes show in an MRI.  I can understand why you don't want the lumbar puncture.  It is a bit scary.  I did have one and it did help in my diagnosis.  But it can also tell you nothing!  Something like 80 - 90 percent of MSers don't have oligoclonal bands.   It can make a diagnosis of anything more difficult with the lumbar puncture as they usually test for many other diseases (HIV, Lyme, Meningitis, MS, other infection).  The cerebral spinal fluid is compared to current blood work (usually taken on the same day) to see what antibodies are present in the brain or spinal cord as compared to the blood.

Best of luck to you both. 

 

Posted 1/5/2010 2:18 AM (GMT 0)
http://www.mult-sclerosis.org/diagnosingms.html

This talks about the lumbar puncture and why/how it doesn't totally rule MS out or give a definitive diagnoses.

I hope you get some answers soon.
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