Hi there sorry to hear of your ongoing problems. I am also undiagnosed affter 3 years of invesigation but my symptoms started very simalar to yours and have returned several times each time it leaves me with some reminder like constant right side facial pain.sorry I have not been much help just wanted you to know you are not alone.Also the folks on this forum have been very supportive. good luck for the future poddy
It sounds suspicious to me.
What tests did they do exactly? How did they determine you had ON?
Did the Opthalmologist do a VEP? (It's a visual evoke potential.)
Either way, I'll tell you what one MS specialist informed me. That if you have a clinical dx of ON (optic neuritis) without lesions there is a really good chance (30 to 50%) that you won't have another attack within 15 years....since you have had two attacks in 3 years, I'd FOR SURE continue to be very proactive.
In my case, I have constant double vision and other vision issues but my VEP came back within normal limits yet has asymmetry in the results. I do not show lesions either but in reviewing my MRI I see several areas that appear questionable which matches my CT scan. My last Neuro left me with treating my (twitching and jerking) symptoms with seizure medicine and without a plan. My PCP referred me to another Neuro and blatently stated he is suspicous of MS or atypical migraines.
I think being proactive is awesome! Do you feel your doctor's are walking with you? What is their suggestion for the next step? In the mean time, I use the symptom tracker on here and am creating a medical timeline to keep track of everything. I think part of the frustration with these Neurological symptoms is they have to show history in time and space.
If you review the health pages above you will find some great information.
Hello....ACTUALLY,.....THIS IS TO EVERYONE....
I have had all the symptoms that everyone here has spoke of and never the mention of ms although it went through my mind in these last 14 years of research......lupus maybe but no, then unusual blister like malformations on mri....I have had 13 hours of brain surgery due to sub-araknoid hemmorage- (brain bleed)- and many other symptoms not listed in this forum....I KNOW NOW!!!!! THE CAUSE OF THESE HEALTH SITUATIONS WERE DUE TO........EXPOSURE!!!! First it was the 3 1/2 year natural gas leak in my home then after that, was living in a place that we found had mold growing...I was there for three years and almost dead when moved into this place in sept 10,...Exposure to those things seperately damaged the immune system and then from there, everything becomes systemic....The brain fog, body control and movement.....Exposures can be mold, ink for printing, paints, pesticides, industrial, cleaners...and just think what most everyone uses to clean mold.....Bleach!!!.......NO!!!!NO!!!!...Vinegar.... everywhere we turn is a chance of exposure....but what if you were told and everyone knows.....NO, It can't hurt you...just give you a headache or It can only asphicate you or blow you up...It can not make you sick,,,,,SO NOW...enough about me
I have been finding that more and more,...these type of symptoms are caused by some kind of exposure!!!! To what?... I do not know....WHAT HAVE YOU BEEN EXPOSED TO IN THE CHEMICAL DEPARTMENT?...Please do not say nothing to quickly.....I now have reactions to....perfumes, colognes, lotions, hair spray, detergent, shampoo, conditioner, walmart,kmart, hills, boscovs, pennys,sears, new cars, air freshners, candles, cook outs, bon-fires,...these things were not the original injury however because of the chemical makeup of these products,...it causes physical reactions..I have said I want to be an FIO...figure it out!!! I know you have already become the detective...Had you ever considered this scenerio....especially the coming and going as well as the with a vengence...If it is exposure....that will attack the immune system which the thyroid is part of and if your thyroid is off..it screws everything else up...Please keep us posted and I will Pray for you to get the guidance that will stop these attacks...I hope you have a BLESSED day...GOD BLESS!!!! loimmarmar
Thank you so much for your response. With this most recent bout of issues I have had an EEG and a VER (visual evoke response)...both were normal. My Neuro-Opth also ordered photographs of my optic nerve which showed it to be "very weak and pale" (his exact words). He also sent me to a retina specialist to order any retina issues out and they did. My vision today is better than its been in 3+ years, even though that steroid (250mg methylcortisole ??) kicked my butt it was well worth it.
Also I feel like the neuro-opth is walking with me but I feel like the neurologist is very dismissive. I think if I had a patient come in that couldnt speak a full sentence or use her right hand i wouldnt say "Go to the eye doctor and I'll see you in 6 wks". I will be finding a new neurologist. I owe that much to myself!
Thanks again and I will continue journaling every day about how I'm feeling in hopes that someone will find something.
Wow! I will be praying for you, it must be absolute torture to feel like you must live in a bubble. The only known allergy that I have is nail polish and I havent worn that in years. I dont find myself being "sensitive" to anything or suffer from headaches. I do have a 15yr old son in my home who is perfectly healthy. I have never been deliberately exposed to any dangerous chemicals. I have also had a mound of blood tests done and was told that my thyroid is just fine. Your advice is definitely something to think about, I honestly haven't even considered that side of things. Thank you so much for your input, I will keep all of this in mind on my journey.
Hi Thatgirl and welcome. I'm glad you found us here.
Presenting with ON is highly suggestive of MS, but I can tell you already know this. The odds are pretty high that someone having ON will go on to develop MS. It may not happen immediately, but that is a good reason to be proactive now.
I have to ask, have you been seen by someone who specializes in MS or a general neurologist? I think with your history I would seek out the specialist and have all the medical records in hand to be reviewed. Something is going on and you should get answers if possible.
I have to note you are in the growing list of buckeyes here - I'm down in the Dayton area. This is a real hot state for MS, unfortunately.
see you around,
Welcome to the forum, Thatgirl50.
You are in a good place for help and support with MS or without. Lulu and the group are experienced MSer's and count for counselors in my book!
The Folks with the purple stars next to their names are forum leaders and their words are good as gold.
I had almost the same symptoms as you with a twist or two. I had Optic Neuritis in 2001 and it cleared up on its own. The VEP came back all messed up in left eye and the Opthamologist suggested I go to a Neuro. I did and she was way too weird and indecisive for me. I did hear her when she said 50 percent of people with ON go on to develop MS. I wish I had had some IV Steroids then to help it clear up faster... that was not offered for some reason.
So I went along my merry way and didn't have anything more for a few years. In 2008 I started having numbness in my legs and suspected a bad back.. Then when I got diagnosed with breast cancer, the whole scenario caused so much stress, My hands went totally numb, both of them over a 2 week period. I was bounced around a few more neuros, all crazy nut weird cases and ended up after an MRI being diagnosed with Transverse Myelitis since all my stuff was bilateral. Long story short, I got with a good MS specialist Neuro and had a lumbar puncture and bam, the O-bands came back MS.
So I started treatment. I am on IVIG since I failed copaxone and the cancer keeps me off any interferon drugs. I am doing well.
Point is, keep chasing this down and find a good Neuro who, Like Lulu said, is an MS specialist. Keep look until you find one who cares and who you can communicate with as you will develop a relationship with that person and its way better if you can understand and like each other and you can trust him or her to do their best for you.
I will stick my neck out here and suggest you get a Vitamin D3 test to see where you stand. Vitamin D is critical to getting better and its cheap and easy to supplement. You want to keep your D in the optimal range on the high side. I had a D level of 12 when I was diagnosed and pushed the D for a few years and now am optimal at 80. I also have not had any recurrence of cancer nor a relapse of the MS. Ask your doctor. Be proactive.
Also chemicals can cause problems. Keep your diet clean and free of processed food and especially avoid aspartame, ie Nutrasweet, Equal and the like. These are neurotoxins. Aspartame poisoning/sensitivity symptoms can mimic MS!!! The other one, Sucralose is no better. Avoid MSG, again a neurtoxin. Keep your B vitamins going especially B-12. My Neuro wants me in the stratosphere as far as B-12 levels go. It plays a role in nerve repair.
Anyways, keep on keeping on Thatgirl, and come on back and see us whenever!
I have never been one to take vitamins and since up until this point my yearly check-ups/blood work have always been great. I dont have alot of education about them to be honest. Can I buy this vitamin D over the counter? How about B-12? and if so what dosage is safe? I currently am not on any other medications.
The neurologist I am seeing is a general one. I will take your advise and search for a specialized doctor. I feel like I dont know where to begin. And alot of it is that I am scared to hear the words. But I know I can not bury my head in the sand for too long on this, I have to put my big girl panties on and take control....its just very hard.
So I go back to my neurologist on 6/9, as well as the optho on the same day. I will listen to what they have to say and make some decisions then.
Thank you for your response and I cant believe how supportive this group is. I feel like I have made some real friends here!
I just want to add my welcome to you on the forum. I am sure you will find this is a very helpful place to be, there are some very well informed people about MS, and some of the friendliest most compassionate group of people I have ever met..albeit electronically.
I am glad that you have joined us and look forward to following your journey..so be sure to ask for support when you need it.
If you can't cross over into the BLUE state, you know the one with the name we never say outloud , you can consider heading to Cleveland Clinic, Ohio State University of down I-75 to the University of cincinnati. All three have MS clinics that deal exclusively with MS.
The university/research centers I think offer the best access to the doctors and staff for a thorough exam rather than just a cursory once-over. My first pre-MS dx neuro exam at OSU was scheduled for 90 minutes. Many people here feel they barely see the doctor in short appointments.
See how you feel on 6/9 and maybe you won't need to move on...... but if you're not satisfied, know that we are very lucky here to have access to several MS clinics.
I too am fairly new to this forum. A couple months ago I was diagnosed with MS. It is so different for everyone and my heart reaches out to those that live in limbo trying to figure out what is wrong. Fortunately for me, I had lesions and was very quickly diagnosed. I am a fellow O-H-I-O MSer! Lulu is so right about the MS Centers. I went to OSU and was seen for over an hour too. They really know their stuff and won't let you leave without some answers. I understand your statement about medicines and vitamins. Up until a couple months ago all I ever took was tylenol and occasionally a multi-vitamin that I was awful at remembering to take. Now I am much more diligent about taking vitamins D, E, Multi, and Fish Oil. We need to do what we can to help our bodies.
I too have some trouble finding the right words or remembering names. I am sorry for the other symptoms you are having. Hopefully they will go away soon and stay away like alot of symptoms do! Don't give up - find a good MS Neuro - and keep in touch! This is the best forum.
Best of Luck!