I am not new here. I just have not been on for a while. I thought this Ms question for me had settled down, but guess not. I started symptoms of Optic Neuritis again last week. Went to my eye doctor and not I have damage that was not there before. He encouraged me to go to another MS doctor to try and get to the bottom of what is causing my ON.
One neurologist said I did not have demylenation. The MRI report said it is demylenation. My PCP believes it is MS. I saw a second Neurologist and she did not want to say either way. "Something is going on, but not sure what. Maybe stress because you have 7 children." Ok, blame the kids.
I am going for a vision field test tomorrow and have contacted my PCP to see what to do next. He needs to give me a referral to the MS clinic. I was told NOT to have another MRI done in my area because the machines are not as good as the ones down state in the large teaching hospital. So.....I guess this can not be ignored.
Does anyone know if IV steroids would have helped prevent temporal pallor of the optic disc ? I have high bp and a rapid heart rate for which I am treated. I am wondering if steriods would even be an option for me.
I did not make this clear. I went to the Neurologists this summer with my first bout of ON. This time I need to get in to an actual MS clinic. My insurance did not cover the MS clinic last year. We are under a new insurance plan now that will cover.
Welcome back, L! It's great to hear from you again, but I'm sorry it's under these circumstances. Oy!
I am glad to hear you will see an MS specialist. It's about time. Someone has got to go out on a limb for you here at some point.
Refresh us~~ Do you have any other symptoms besides the ON? Do you have any sensory or motor symptoms going on as well?
I know you're busy with your children (and some are special needs, if I remember, right?), but that is SUCH a cop-out! Your doc needs her mouth washed out with soap!
Tell us more, like your age, too. If I remember, you're about my age, which is 43. Probably younger -- EVERYONE seems to be!
Anyway, I don't know too awfully much about ON, except for its notoriety to sort of give someone an awful introduction to MS. Or, to precede MS, be a predictor of it. At least one doc (radiologist, maybe?) thought you have demyelination....Talk, sister, and we'll talk back.
OKAY ITS TIME TO KICK SOME DR RUMP, KIDS DON'T CAUSE ON,STRESS DOES NOT CAUSE ON.
ON IS INFLAMATION OF THE OPTICAL NERVES.VERY FEW THINGS CAUSE ON,MS BEING THE BIGGEST CULPRIT.I JUST RESEARCHED THIS RIGHT BEFORE CHRISTMAS AS MY LEFT EYE LOST ITS VISION AND MY NEURO SENT ME FOR A VEP AND IT CAME BACK BILATERIAL ON,BUT THE RIGHT EYE VEP HAS BEEN 130 SINCE 1998.LEFT EYE 147.WITH THE VEPS THE P100 SHOULD BE 90-115 TO BE CONSIDERED OKAY.
THE OTHER CAUSES IS THE EPSTEIN BAR VIRUS AND WEST NILES VIRUS.CRONIC SINIS INFECTIONS CAN CAUSE ON,BUT LETS FACE IT WE'D ALL KNOW IF WE WERE SICK AND WOULD BE AT OUR PCP'S WITH THESE ILLNESSES.
SEEING AN MS SPECIALIST WOULD BE AN ADDED PLUS.HOPEFULLY THEY'LL DO A VEP.
WHAT A BLESSING 7 CHILDREN,BLESS YOUR HEART,OH THAT NEURO NEEDS MORE THAN A WEENIE ROAST ITS TIME TO GET THE VOODOO DOLLS BACK OUT.
I HAVE STARTED TO SEE AN IMPROVEMENT WITH MY EYES AFTER SOLU-MEDROL INFUSIONS BUT ITS BEEN 3 WEEKS,TRY TO ADVOID STRAING YOUR EYE AS THAT DOES INCREASE THE ON SYMPTOMSS.
AFTER RESEARCHING ,ORAL STEROIDS ADD NO BENIFITS FOR ON ,AS IT CAN CAUSE THE OPTICAL INFLAMATION TO REOCCUR.
Yes, I am 44. Closer to 45 now. MY birthday is in March. I do have special needs children. Seven children. 24 year old daughter and her husband who are about to give birth to our first grandchild any day now! 22 year old daughter who will graduate from college with a B.S. in May. She is still living at home and is very helpful. 11 year old healthy son, 11 year old daughter, 9 year old son, 5 year old daughter, 2 year old son. All four have Downs.
I have a family history of MS. An aunt had it. I have a history of Trigeminal Neuralgia and now ON (twice). I have the typical pins and needles, numbness, problems with my right leg not working as well as it sould, burning, times when I feel l ike water has been sprinkled on my leg. Now I have started having a lot of aching in my legs.
My MRI showed two areas of "demyelenation" although the neurologist felt the radiologist was wrong. She feels the spots are migrane or high bp realted. My PCP disagrees. The MRI showed ON. I have not had another MRI since July 07.
I had to have a hysterctomy back in Oct. I actually feel so much better. I do not have the tummy pain and I feel so happy! I kept one ovary. The other one was not good and must have been causing some hormone problems.
My eye problem is very frustrating. It is not only my eye with ON. I have times when both of my eyes give me trouble. I am not happy to hear I have damage that will not go away now. I was not given the steriods that many recieve. I am not sure if they would have made a difference anyhow.
So, that is about it I think. My symptoms come and go. So far today things have been working ok. There are times when I feel like I am not going to be able to function. Paying bills, making meals and serving them......I feel almost confused I guess. I am not on top of my game anymore, that is for sure. I can not multi-task like I used to not all that long ago. That is what really worries me the most. I feel goofy!
That doctor was so weird. I didn't even bother to tell her some of my kids have Downs. I wanted her to take me seriously. She told me I needed time to go do things for myself. Is she going to come and baby-sit? That would be nice of her. : )
This would be my second round of ON. I had a VEP this summer and it did come back positive for ON as well as the MRI. I had blood tests for EBV. I do have the virus, but was not active. No west nile or sinus infection at that time. I did have an upper respritory infection this time, but that would be really reaching to blame the that I think. I had a cough and really did not have anything that made me think sinus infection.
ON in both eyes is a real fear for me. I have had pain in my other eye, but it still looked normal today. My PCP is disgusted with both of the Neurologists I saw. He feels it is probably MS. He has been my doctor for more than 15 years and he knows how healthy I am in general. Now that I have insurance that will cover the Ms clinic here in my state I actually have some options.
The doctor I saw today said do NOT get an MRI in the area we live in. He said the doctors at the large medical center and Ms clinic down state said the MRI's we get up here are not done properly and the machines are not up to date. So, that is good to know. At least I have better coverage this time and someone who knows what he is talking about!
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