Newly Diagnosed and O Band question

[suzee112]

Helloan 47 yrs old.. am newly diagnosed after 4 1/2 years from my 1st mri. (that one showed 3 lesions, one enhanced.)  Now i have 7 some they 'wouldn't count' none enhanced and yet I keep hearing there are no changes ( i have been to different neuros). I recently redid my spinal.  The spinal showed 8 O-bands none in serum and no presence of infection.  blood and vep's normal.  I have double vision and nystagmus due to the lesion placement on cerebellum. balance issues with that as well. Most recently my left leg is weak, weird burning  sensation that only lasts a moment in different places and pain pain pain - aching, back ache, etcetc (differing kinds).  I don't think my spinal showed any O-bands 4 years ago. My husband believes they 'botched' the test.  could a person get 8 new bands in that span of time do you think?  

I've done alot of research in that period of time to get myself and answer.  While I feel validated in a sense (mostly in my own mind that i'm not totally crazy) , at the same time i'm rocked by my firm diagnosis now. They are suggesting interferons and i'm having alot of difficulty deciding whats right for me.
Thank you for any input

[suzee112]

HI Minnie - The Dx is so new - I feel like I've been through 4+ years of self torment and constantly trying to solve an unsolvable puzzle.  It would make anyone feel 'crazy'.  I clung to these sites searching for any answer to help and for support.  My absolute understanding goes to you in your need to find the 'answer'.  I hope for you that you have the strength to keep asking the questions and seeking the support and that the answer  comes soon and brings you peace of mind.

Pastor Dan, thank you for your input.  I understand what you're saying.  I am only taking symptom relief meds at this point, that give little actual relief to my symptoms.  I have lots to consider and appreciate the input.

Hope you all have a good day
Suzee

[LilMinnie]

Suzee, you summed it up perfectly as to what I have been going through. It does cause so much self-doubt. I still don't know what I have, although it appears we are creeping toward answers.

I am very grateful for this site and the fact that the great people here let me hang out and ask questions. There is a lot of love and support here that is invaluable.

I hope you get to feeling better and keep you and all here in my thoughts and prayers.

Hugs,
Minnie

[PastorDan]

Oh, and Minnie, you've sure hit thatt nail squarely on the head.

[PastorDan]

I have reached a point (with my undiagnosed illness) at which I would probably accept any form of treatment offered, if there was any chance expressed that it might help.  I think I would even risk (probably even tolerate) some side effects, just to reduce the chances that the symptoms I've been having might come back again (if they ever go away again).

I had a 2.5 year remission, and (rightly or wrongly) believed that I was free of whatever the problem had been.  I'd like another such period, soon.  I think I will appreciate it more.

Meanwhile, my symptoms seem quite troublesome, but are really aggravating more than disabling, and I am giving thanks that it's been no worse.

[suzee112]

Hi everyone, Thanks to all of you for writing back.

Minnie, this disease for me, caused so many periods of doubting myself.  Since things can come and go, often when I was feeling 'good' i would say "did i really feel that?"  " am i crazy?".  Then I would feel so bad again and feel panicked because i didn't have an answer.   It was hard.   There's never a definitive with this disease because they don't know why we have it.    

Sho and Sarah, I don't know what to do.  It's really confusing and i'm scared, but am leaning towards at least starting one to see and researching while i am.  I can always stop.  But like you said, probably best to get going with it.

Today, my pain is awful. everything hurts and aches.  My foot is wonky and feels so weird.  and I'm tired.  It's not one of the 'good' days.
thank you for being here...
suz

[shoshin]

It's thought that o-bands in MS accumulate over time and then don't go away (interestingly, there is some recent research that suggests that Tysabri might be able to make o-bands go away: http://www.ncbi.nlm.nih.gov/pubmed/23093485) Going from normal to 8 over four years does not seem unreasonable. Of course, they could have botched the test or switched your results with someone else or something like that, but this would seem unlikely.

As for interferons, it's a good idea to get on a DMD as soon as possible as they are thought to be more effective if they are started earlier.

It is hard to come to terms with a diagnosis of MS even if it's a relief to get an answer after a long search.

sho

[SarahL2491]

I think you need those DMD drugs.  If interferons is where they want to start, go do it.  You need protection as soon as you can get it.

Denial is normal.  I've had my Dx about a  year and still go thru denial periods.  It's what we do.

Drop back by any time, welcome to our corner of the web.

[LilMinnie]

Hi! I'm not diagnosed, yet like you have done research. Just wanted to welcome you and share what little I know until one of the veterans comes along :)

Anything is possible. They could have botched the test. Based on my DH's reaction to what my neurologist and Ophthalmologist have said, your DH just may not want to accept it and be in denial. I thought it best to share legitimate concerns and report results with him. As you know, the diagnostic process can take a long time.

I am a realist. I want to know. DH keeps saying we don't know anything for certain, and at one point even said that it seems like I "want" MS. I can assure you that I absolutely don't! I don't want anything but to be my old self.

My take is that it is difficult to accept that a loved one has such a condition, and if there is any room for doubt, they will find it. I also believe that whenever I am diagnosed with whatever this is, while a part of me will be relieved to know, there will be a part of me that will try to find the loophole. I believe that is just human nature.

As for your LP question, I will leave that to someone who knows more than I do ;)

Hugs,
Minnie :)