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2012062 tn?1330437664

Should I be concerned about my abnormal MRI and VNG?

This is a cross post. I originally posted in nuerology, but after looking up periventricular lesions on MedHelp, it was clear I needed to post my questions here.

I was recently sent to see a neurologist for occipital neuralgia that I have had off and on since 2008. The pain is not like a headache, it's more like an injury. I do not have migraines. It hurts to the touch and muscle relaxer sometimes helps. Upon my recent examination, Neuro said my balance was a little off  and I had diplopia and sent me for an MRI and VNG. I have known my balance has been messed up for a while. I cannot walk in a straight line if I am not looking straight, bump into things a lot, can't stand well with my eyes closed. I also have bad vertigo, bouts of weakness and such, tingling, vibrations in my body and and burn in in my legs. This has been going on for years and my MRI from 2008 never showed anything. So my most recent MRI comes back abnormal as well and my VNG.

MRI says: several small nonspecific periventricular white matter lesions without mass effect or restricted diffusion. This may be secondary to small vessel disease, however in a female patient this age, possibility of demyelinating process such as MS should be considered.

VNG: Nurse just told me it was abnormal and that the Doctor would to speak to me about it. But she can't see until the end of Feb. Have a nice Christmas...


What the heck does this mean for me? I tried to get in to see the doctor but she is out on vacation and there are no openings for a while. I am just a little stressed out. Does any of this sound familiar to any of you? She tested me for myasthenia gravis but that was negative so I guess that is good news at least.    

Just wanted to add that I am also under the care of a rheumatologist. I had a really freak health scare in May 2015. Suddenly my knees began to hurt. Both knees at the same time. The joints were fine on xray, but I was literally immobile for 17 days. I was also having really bad/fast muscle spasms on my face, both side at the same time just under my eyes accompanied  by numbness and tingles all over my body. It was the strangest thing ever. I was tested for lupus and RA. Both were negative. Could that random knee pain be related to my abnormal tests? I'm not sure what other tests they could order or what other possibilities there are for what is going on. What do you think?
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667078 tn?1316000935
Yes. They did a visual evoked potential. A BAER for hearing. EMGs of my arms and legs. My VEP and BAER were abnormal. They sent me to a neuro opthalmologist who said I definetly would be diagnosed with MS. She looked at my MRI and did lots of tests. I have had double vision since the 1960's. They just hook electrodes to you and track how fast your body reacts to stimulus. Not much to it.

Alex

Helpful - 1
2012062 tn?1330437664
I wish I could edit these posts lol. My auto correct is ridiculous. Pins and needles was what I meant to say.
Helpful - 0
2012062 tn?1330437664
All done with my testing. I did have some issues with my right hand and forearm after the emg. It felt like my arm was partially asleep all day and most of the night. Pit's and needles I guess you could say. I had terrible neck tension and spasms after the test. The drive home kinda suckered because it was really uncomfortable. But this could all have been stress related
Helpful - 0
667078 tn?1316000935
It will be good to have an answer. You will probably be all over the map emotionally that is normal. You are relieved to know what it is. You will be sad and angry and frustrated. You might go into denial. We call it the roller coaster. What ever you do don't blame yourself for causing problems for your family. My husband loves me regardless of my illness. I worried about the money. Be kind to yourself and your family. Everyone has to deal with this in his or her way.

Alex
Helpful - 0
2 Comments
I guess my next test is an evoked  potential. Ever have one?
I guess my next test is an evoked  potential. Ever have one?
2012062 tn?1330437664
Well, I'm back. So doc said that she is reasonably certain that it's MS. She talked for a bit, went over my MRI with me and wants to do some tests and would like to do another MRI later on. She got me set up for some more testing this Friday. That's all I know as of now.
Helpful - 0
667078 tn?1316000935
Let us know what the doctor says. If he wants your husband it has to be important.

Alex
Helpful - 0
11079760 tn?1483386130
Can you bring a friend along? The fact that the neurologist asked you to bring your husband means there is something significant to discuss. From my own experience being recently diagnosed, I can tell you that I've been lucky to retain 50% of what the doctor said at those first few appointments!

Just something to consider. Wishing you all the best. Let us know how it goes.

Cheryl
Helpful - 0
667078 tn?1316000935
No $7500 is a lot when you do not have it.

Alex
Helpful - 0
1 Comments
  I just got a call from my neurologist. I think he may have just went over my MRI and VNG. They want to see me in the office today. She asked me to bring my husband. I did decided not to worry my husband because he has some stuff to deal with at work so I will just go it alone. Hopefully they have some answers for me.
667078 tn?1316000935
It cost me $10,000 with insurance to be diagnosed with MS in 2007-9. It really is unfair. My cancer treatments are $100,00 a piece so it puts in perspective.

Alex
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1 Comments
I am so sorry you are going through all of that:( Here I am complaining about $7500. Our medical care situation ***** her in America. We have such great treatments and technology, but it isn't worth a damn without access.
667078 tn?1316000935
Make sure if you get a LP it is for MS. They are looking for o-bands in the CSF and not in the blood serum. They draw blood at the same time as the LP and send it to a special lab usually the Mayo. If they do a normal LP it will do you no good for a MS diagnosis. They look for different things in a standard LP. CSF pressure and infection. That will do you no good. The only one who can diagnose MS is a neurologist the insurance will not accept it. My family doctor found my MS but it too two years and several neurologists two years to diagnose me. The first neurologist said it was MS but would not diagnose me. I was told I would be diagnosed with MS but It took 5 MRIs and a LP and a bunch of other tests like for Lupus.

Alex
Helpful - 0
1 Comments
Oh good grief 5 MRIs! I know my MRI in 2008 cost $5000. That's insane:(
667078 tn?1316000935
I get the financial. I use to worry about money when I was diagnosed with MS. I then was diagnosed with advance cancer, Now what I owe is obscene between both ilnesses.

If it were MS the problem is MS can progress with or without symptoms.If you have a relapse it is not a matter of treating it and going back to where you were before the relapse.

It is a pay now or pay more later scenario. The treatment is high. Being in a wheelchair can be much higher.

It is unfair it really is.  Hospitals will work with you. I pay so much every month  forever.

Did they say about how many lesions? If it were one or two that might be true. Three or more is different. I would ask the doctor if you have something called Dawson's fingers. It is something you see in MS on the brain MRI.

Also if you catch MS early before you have many symptoms you can keep your disability down. Again you may not even have MS. Let us hope you do not have MS.

Alex
Helpful - 0
3 Comments
I'm  going to go see my family doc this week. I will show him my results and ask him what tests he thinks I should get and just ask him to order them since I can't seem to get the neurologist to even speak to me. He is a pretty cool guy so he might just do it if I explain the situation. I think the next best test would probably be a LP.
Oh and they just said several lesions. Didn't give a number.
I looked at my MRI photos and the lesions do look like those Dawson's fingers you mentioned.
667078 tn?1316000935
The location of the lesions is where MS lesions can be. That does not mean you have MS. An MRI does not diagnose MS but it is part of the puzzle. You might want to see a MS Specialist. Neurologists specialize and not all of them know about MS. You knee thing does not sound much like MS but a doctor would have to figure it out. When being tested for MS RA nad Lupus are often tested for.

Is your neurologists still following you at least every six months?

Alex
Helpful - 0
1 Comments
No, I have not been seeing her for a full six months month yet. Unfortunately I cannot afford anymore tests as my insurance rolls over in January and my $7500 deductible kicks in:( My symptoms are pretty mild compared  to other posters. So I think I will manage just fine in the long run. I read that often times brain lesions just happen and there is no known cause.
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