MS or not MS

[tattitude]

3 yrs ago in June I started having numbness/tingling in my left arm.  Then I noticed i was getting a black shadow in my left eye and went to the eye doctor.  He sent me to an eye specialist who sent me for an MRI which was normal and then to an neurologist where  they did the evoked potential test.  After the EVP test the neuro said he was positive i had MS and did a spinal tap in his office.  the spinal tap was negative.  All my blood work comes back normal, i have also been tested for Devic's disease, lymes disease, lupus, and many other things...all negative.  The entire left side of my body is now numb and i still have the optic neuritis in the left eye that does not go away at all.  The numbness is now starting to spread to the right side of my body and i am beginning to have warning signs of getting optic neuritis in my right eye as well. Seeing bright flashes in my right eye and a small visual disturbance.  My lips are numb and i have a metalic taste in my mouth.  My neurologist has giving up on me, will not diagnose since i have no lesions.   He says he is perplexed i have all the signs but no proof.   By the way im am going through the VA and have been through 4 different neurologists in the past 3 yrs, due to changes in husbands job insurance and then VA switching out doctors.  Anyone have any different suggestions?

[Teiper]

If you dring diet sodas that contain Aspartame, STOP it immediately

[chica123111]

about two years ago i starting having severe headache,ear pain, severe weakness, visual problems, facial numbness, nystagmus, ect. I went to my regular doctor several times with no luck at the end she told me that she did not know what I had and that's when i switched to another doctor; he send me to a neurologist he send me to do an MRI, the result of this MRI was that i had some foci of hyperintensity wich may represent Gliosis vs migraine vs demylination ??? then he send for a VER wich came back abnomal. The Cervical MRI was normal they just noticed a partially empty sella ??the thoracic MRI was normal too. My neuro send me to another Neuro for a second oppinion she send me to a neuro-ophthalmologist he said that my left eye is slower than the right one ( i forgot the name he gave me) my new neuro repeated the MRI wich had no changes compared to the first one. she finally did the spinal tap wich was normal.
now they are not sure what i have, they hesitate to say i have MS but they can disregard it. i saw my neuro today and she send to a Cardiologist to get a TTE/TTE done.
at this point i am just so discourage because i have the same symptoms and my vision just seen to get worst.....help

[coach291]

I got diagnosed this summer with the a positive VEP and history of sympotoms. I had the same one sided numbness along with extreme fatigue and a few other syptoms. (Heat brings on symptoms along with new ones) I had my MRI done without contrast and it was ordered by my regular dr. MRI came out clean. Neuro told me if I had one now there would most likely be lesions present. I got tested for all other mimics and all came back negative. My Neuro told me that the VEP is the most accurate test for MS. Gave me the option for a spinal tap if I wanted one but he did not incourage it. Started copaxone a couple months ago along with meds for pain and fatigue.

[essdipity]

Nice to meet you, new member!

This situation is maddening, and so many here have had the same experience. I don't know whether you have MS, though MS is by far the most common disease that causes the symptoms you describe.

I'd be willing to guess that you DO have lesions, just none that were identified on your one MRI. There's a big difference. Do you know whether the MS protocol was used during that test? Do you know whether a contrast agent was administered? Do you know the strength of the MRI magnet? If all of this is gibberish, please take a good while to read in our Health Pages, upper right of screen..

Also, did you have only a brain MRI? In MS, brain, cervical and thoracic spine must be imaged.

If you don't have them already, get copies of all your test reports, from eye doctors on. Also, and this is a MUST, get your own MRI images and radiology report that accompanied the MRI.

The VA is notorious here for fouling things up and poor internal communications. If need be, find a non-VA radiologist and ask for an independent evaluation of your MRI.

Good luck to you and please keep in touch.

ess

[sllowe]

Hi there,

Welcome. I don't know how the neuro could have felt so positive it was MS and then give up on you if you didn't fit the criteria.  There are many other neurological disorders and diseases out there besides MS.

I think it's time to put the thumb on this Dr. by coming right out and asking, are these problems neurological? And, if not, where do you suggest I seek care for my problems?

That's my suggestion because a good Dr. will want to treat you if he/she can. And,  a good one will send you to a specialist if it's not in his/her field.

Thanks for joining us, hope we can help you w/some next steps.
-Shell