Optic Neuritis and MS

[LATW]

Forgot to add that my labs are all ok.
LATW

Hello,
I started with Optic Neuritis about 8 weeks ago. It was confirmed with and MRI. The MRI showed: "abonormal right optic nerve demonstrating enhancement without mass lesion along its intra orbital segment. Imaging findings compativble with optic neuritis. Additional note is made of a small nonspecific area of increased signal and associated enhancement in the right posterior frontal subcortical white matter. This may represent a concomitant area of active inflammatory disease such as that may be seen with actue demyelination. Clinical and MRI follow-up suggested...........

I do have controlled high bp and the neurologist said the increased signal area could be related to bp. I go for a c-spine tomorrow and a BAER, SER, and VER next week. So, she is not 100% sure. I have hyper reflexes on my right side and some odd sensations. I have not had anything go completely numb but my right leg was getting an odd disconnected feeling. And oh the fatigue has been just awful and my brain feels like mush. The ON does seem to be getting just a bit better. I am just wondering if lesions on the c-spine can cause these symptoms. I am also wondering if these are the very first signs of MS. I have had problems in the past. My PCP told me I have FMS. Now the ON and the abnormal brain MRI....I am afraid of being thrown into the land of not really knowing what is going on. All I know right now is I have been miserably tired and can't see well.

Any thoughts?
Thanks
LATW

[JonM]

I hope its not MS, I wish it on no one, but you're describing it to a T.  If your Neuro stays uncommitted on your DX, then please seek a second opinion.  I read posts here all the time of people who have suffered for years with out a diagnosis, and some of them really sound pretty clear cut MS.  Obviously we can't tell on the other end of our keyboards and I'm not a doctor, just a sufferer.  I hope you get an answer soon.

Best of luck
Jon

[LATW]

Hi Jon,
thanks for your reply. I do want to find out what is going on. I have been generally healthy most of my adult life. I can go for several years without needing to see my doctor for anything but a BP check. I am in pretty good shape. I can, or was, able to keep up with my 7 children. Then all of a sudden WHACK! So, here I am. Actually, I did forget that I have had two bouts of trigeminal neuralgia....that is not something you'd forget easily. That happened about 4 years ago on the same side of my face as the ON. I felt like it was starting to flare up a little when the ON started. I dread that ever starting again.

Well, I just want an answer, whatever it ends up being,  so I can deal with it and move on. I don't want to be in limbo. I will say that after about 2 months of this it is starting to get better. I am still very tired though. If this is MS as long as it comes and goes, I can deal with it.

L

[Quixotic1]

I've been wanting to say hi, and I want to welcome you, but Jon has seen to that.  The symptoms you describe sound much more like MS than fibro.  Optic neuritis and Trigemianl Neuralgia are both classic presentations of MS, especially when the TN occurs in bouts and not a chronic, life-long thing.  You have my greatest sympathy for the TN and may it NEVER happen again to you.  That is ranked among the most painful conditions known.  Add in the fatigue, hyperreflexia (not a part of fibro), paresthesias.  I suspect you have come to the right forum.  For that I'm so sorry, but you are in good company here.  We have a lot of people searching for the diagnosis, newly diagnosed like Jon, me and Lynn, and a few whose diagnosis goes back a bit.

I will say, it sounds like your neurologist is on top if things.  The work up is totally on target.  I'd like to hope the MRI findings would be because of your bp, but that doesn't really account for the other stuff you're going through.  It's wonderful to have someone arrive here with what sounds like an attentive and smart neurologist, but if you have questions just aim them at us.

I hope you stay for the info, the comraderie, and so we can know how things turn out for you.  I am a physician with MS.  I'm 55 and was diagnosed this spring.  The fatigue has been my biggest problem.
so, how old are your 7kids?  Do you still practice Aerobic Parenting?

I don't know how much you've looked into MS and how it acts.  It presents and progesses differently in each person, but even in those who have clear attacks with resolution, it may not always keep that course.  There is a layman's website which has a nice description of MS, from symptoms to diagnosis and a good (and pretty accurate) discussion of the science behind it.  

http://www.mult-sclerosis.org/diagnosingms.html

Jon is absolutely right, though.  With a postive/suggestive MRI, confirmed Optic Neuritis and historical evidence of two prior attacks, he should be moving fairly quickly toward a diagnosis and consideration of Disease Altering Meds.  We have had several people whose neurologists would never commit to a diagnosis, so don't let him put you off if things come back normal.


If you'd like to get to know us, there is a thread - now on the 2nd page - Called "What I went through to get a diagnosis of MS".  It's basically our stories in our own words.  We invite people to write up their stories so that we can be a real community and not just a "jump in FAQ."  You had your C-spine MRI today.  Hope it went well.  Best wishes, Quix

[LATW]

Hi

Thanks so much! My MRI went well.  Our story about our 7 children:

My husband and I have been married 22 year. I am 44. We have two biological daughters. One is 23 married and expecting our first grandchild! Our 22 year old will be in her senior year in college this fall. When our 22 year old daughter was 11 we decided to adopt a baby boy. Our oldest son came to us at 9 days old. When he was 2 months old we were called about a 3 week old girl with Downs. We took her. 18 months later we took a baby boy with Downs who had been drug and alcohol exposed. Four years later we took a baby girl with Downs who needed open heart surgery and a feeding tube. About 18 months ago we took another baby boy with Downs who is healthy. Their ages are now 10,10,8,4,1  So , that is 3 heatlhy children and 4 with Downs. Yes, I am still doing "Aerobic Parenting" great way to put it!


It is very easy for the doctor, and other people, to pass off my problems on the amount I have to do. I am busy. But I don't feel I am any busier than any other person who is a hard worker. I have my husband, older daughters, extended family, and my children's therapist as a great support system. The amount of work I have, or don't have, would not case ON. I was dx'd with white coat hypertension when I was in my early 20's before I even had children or many worries. So, can't blame my bp on the kids either. I have had people try to say that the kids are causing me stress. Well, they are no more stressful than any other child. They are all doing really well and we enjoy them. I don't know what I would do without them actually. I would have to open a day care or something!! They keep me going and happy.



So anyway, My mom and sister have an official dx of TN. They have been on anti-seizure meds. I have chosen not to take that medication because I don't have constant pain. It did flare up just a bit when the ON started. I was about ready to panic. I can manage to deal with most everything else. TN is a nightmare. My dad's aunt had MS. I know MS is not passed down but have heard there can be situations where more than one family member has an MS dx or some other auto immune issue.

I don't feel like I fit the FMS category that well. I know people with FMS and they deal with so much pain. Thankfully, besides the TN, pain has not been a real issue for me. Fatigue has been awful with this though. It is not the normal "Thankgoodness the kids are in bed and I can rest now"  It has kept me from even doing some of my own self care routines I would generally have.

So, yes, I think I do have a good doctor. She is not just passing this off. I will be going in for another brain MRI in 6 months. She also talked about doing an LP at some point. I want to avoid that if it is at all possible. I may get to the point where I am willing, but I am not right now. I am still trying to learn all I can about MS. I pray that this may just be something that just happened for no reason...but, I guess in my heart I know there is probably a little more going on.
I was told by a well meaning therapist that I was "too old" to be dx'd with MS. I would say if you are 55 and just recently dx'd then I am probably not too old. I think she was trying to give me some hope that it is not MS.

Thanks so much for your wonderful welcome. I will check out the other information you gave. I will post what my c-spine report says. I am just going to assume all of my tests will come back ok unless I hear otherwise. ;-)

[JonM]

Wow, what wonderful people you and your husband are to take on 4 Downs.  I'm in awe!!!
Jon

[LATW]

Hi Jon,
Thank you. With all of the therapies, education, and medical care avalible these days a person with Downs can do very well. I believe all of mine will need some kind of supervised care even when they are adults, but I have heard of others who work, get married, even go to college. Our 10 year old daughter is reading and doing simple math.

It is a commitment. A life long commitment. But, when I look around and wonder what kind of difference I can make while I am here on this earth, I can't imagine doing anything else. Really, taking them was more a selfish thing for me to do. I LOVE babies! So I was and am thrilled. I am just praying God will give me at least 15 more healthy years to get these kids mostly raised. My worst fear is I might have MS and my ability to care for my family ends up being sucked away. That would not be good.

LATW

[JonM]

We need more "selfish" people like you.

God Bless !
Jon