17 year old female has MRI showing 11 lesions in 2 areas of brain. VEP and AEP both abnormal. Blood tests negative for lyme and lupus. CSF showing NO oligoclonal bands. Can you be positive for MS with a negative CSF? What now? Any good MS specialists in Kansas?
Yes you can have MS without the og bands. There are other markers in the CSF besides the og bands. The real way of diagnosing MS is through clinical presentation of MS symptoms separated in time and space and an MRI typical of MS (lesion patterns and load a certain way).
I would think the University of Kansas would have a medical school and dept of Neurology.
Eek...poor thing. Sorry you're in this situation. Yes, you can be diagnosed with MS with no oligoclonal bands. Quix has a good thread on here about diagnosing MS, you should read it - very informative stuff.
Best thing to do is write up your symptom history, and get yourself to a MS-specialized neurologist and see what's up. I don't know any specific doctor in Kansas, but you can contact your local MS Society for recommendations.
Hi, Welcome Here! Who is the world told you you have to have a positive spinal tap to be diagnosed with MS. At least 25% of a new diagnosee's are completely negative at time of diagnosis.
Oligoclonal band s are nice confirmation as is an elevated IgG index. The diagnosis is made on the patient's reported history (have you had any symptoms? What made them do an MRI?) and the neurological exam (is your exam normal?)
The MRI with 7 lesions is very, very positive, and the evoked potentials back it up.
BTW - I was born in Wichita and almost went to KU Med School - ROCK CHALK!
There is a very good MS Center at the University in KC. You can find other specialists by going to your local chapter of the MS Society and loking for doctors who have signed up with them as Specialists. A little warning, all docs that call themselves specialists are necessarily very good. If you live near a big town I would contact you local MS Society and find a support group. Talk to the people there and find out who thinks their doctor is topnotch.
Tell us a little about you and what you've been going through. We're all going through one phase or another of it here.
Thank you so much for all of your posts. This has all caught me by suprise. I am in the early stages of learning of this disease. The only people I really knew with MS were ones I saw in Phoenix when I did home health visits. I am a social worker ( I cannot social work my own family though !!) It was heart breaking to see a 22 year old who used a cane and at the end of my 9 years she was bedridden. I know this is not everyones experience.
My daughter Carrie is 17 and a senior in high school. She went to a optometry appt as her eyes were bothering her. I thought it my be her solution which was taken off the market or wearing her contacts too long. The optometrist noticed her pupils were unequal and wanted to see pictures of her at different ages. I provided these. The optometrist saw her again and said it was important to keep watching this and possibly get an MRI. A week or so later when I could catch my teenager I saw her right pupil to be 3 x the size of the left. Im no doctor by this screamed NEURO to me. I could only get her in a week later for an appt. Was offerred an MRI at that time or to wait and I said I would take the earliest appt. Got the MRI and it was positive for at least 11 lesions, some in the brain stem and some in the cerebellum. I was offerred a lumbar puncture or to wait. I took the next appt. The lumbar puncture results were negative for lyme, lupus etc and did not show any bands. My neuro says to get another MRI on the same machine in 6 month. I told him that I dont care what the label is, a 17 it is not normal for a 17 year old to have lesions and abnormal evoked potentials. I agreed that if there were more lesions she should be aggressively treated. He says he does not think the lesions are active ???. Carrie has migraines ( thanks to me) I know there is a possibility that migraines can cause all of this but something is fishy about all this..... I am trying to think of everything. She just got an immunization for HPV and I thought maybe it had something to do with it. You know, you try to think of everything. Then I thought, I had chronic fatigue syndrome when I had her and maybe I predisposed her to this. My 10 year old was diagnosed with juvenile rhuematoid arthritis. My 12 year old has chronic asthma due to RSV. I feel like, what did I do to my kids? I do pray for strength and Carrie is the only one who will take antioxidants (OPC) which make me feel like if I can keep her healthy at least that is something that can be done. ....I appreciate your concern. That is so thoughtful to ask to hear more about this. I am not use to this. Also , yes, I am a KU Jayhawk who has returned to Kansas. .... Thank you all who have posted to me. It has really helped. I wish you all well. Camille
I'm sorry you're struggling so with your daughter. I have children, myself, and I know how you hate to see them have any kind of difficulty.
I am such a total believer in that 'mother's instinct.' You go, girl! When something doesn't seem right, pursue it. When it comes to your child, you have that seed of power, as her mother, I think.
Hang in there, and don't give up until you feel assured that your questions have been answered. Let us know how things are going. So many of us here have been to the heights of frustration because we know there is something 'not right' with our bodies that we know so well, but can't find a doctor to listen or take the time to properly investigate.
We're here to encourage you. To give you some ideas if you feel you've exhausted all yours. Good luck, and I hope Carrie is feeling well, along with your other precious ones!
My LP had no bands just high IgG synthesis and myelin basic protein was extremely high.Follow your instincts.11 lesions are not normal in a 17 year old child.
I have 4 children,don't blame yourself for their disorders, it will exhaust you,
my oldest is dislexic,
my 18 year old is vision impaired,but in the Navy(electrical nuclear enginear)
my 16 year old son broke his neck at the age of 2---he plays football,wrestles and does track,,he also has osgood slaughter disease.
Now my 12 year old has developed nystagmus a form called INO/BINO common in MS.Plus she has periods to where her right arm goes numb.We have not had MRI's done yet,we are kinda waiting it out.She has been to my neuro and he agrees.They'll do the MRI's when she turns 13.It scares the **** out of me.
hang in there,ms is now treatable and livable.
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