Thanks for the comments. I will be surprised if any other Dx comes out of this, too, but then again, I would have bet my life savings that my LP was all clear and my brain MRI was, too. I guess I now have to give up trying to predict the future and live life a little closer to the moment. That's not all bad :)
As for the steroids, my concern is that the issues with my arm/hand are now going on for over a month (ugh) and have been getting worse instead of better. I have an appointment with a MS Doc on Nov 2. If I can keep up with work and life for another 2.5 weeks, I may just tough it out...scary sounding meds!!
I'm sure I will have 1,000,001 questions coming up. It is really nice to have the support of people who have been there.
Cheryl
Well, darn, I have to agree, lesions in both brain and spine, a lot of o-bands kind of screams MS to me. I'm glad your journey is finally coming to a conclusion but am sorry if it means you're joining the club.
Depending on how much your symptoms are impacting your day to day would be a good way to determine whether or not you want to try the steroids, as JJ said they don't halt the damage but can shorten the duration of the relapse.
Hugs,
Corrie
Oh Cheryl, I'm so sorry! We all pray and wish for answers, but was hoping the outcome was different for you! I hope with time and the right treatment, you can get the use of your right arm/hand back to normal and that the sensory symptoms are alleviated.
Thinking of you!
Karen
I bet it's not your favourite day..........HUGS!
I really don't think the out come of your blood tests are going to alter the expectation of your diagnosis being RRMS, if you have active brain and spinal cord lesions the options become really narrow and MS would be the most common demyelinating condition for a women in your age group.
Keep in mind that IV corticosteroid treatment is to try to shorten the time in relapse, so it won't necessarily bring back function, you still might need something for the paresthesia if it doesn't completely remit, one step at a time....
If you need support we are here!
Hugs..........JJ
Well, the MRIs showed new lesions in my c-spine and for the first time, lesions in my brain - all are active. Unfortunately the labs for ANA, B12, Sed Rate were never run, so I did another blood draw yesterday. Once those come back (all were normal 1 year ago, so I'm not expecting anything to show), then I will have the official diagnosis of RRMS.
In the meantime, I'm considering an IV corticosteroid infusion to see if I can get my right arm and hand more functional and hopefully alleviate the horrible itching/burning/numbness in my right jaw and neck.
Not my favorite day...but it sure could be a lot worse! At least I know what I'm dealing with now.
Cheryl
I have read through Quix's posts on O-bands and found them so helpful. I look forward to the additional reading as well. My IgG Synthesis rate was high, too. I think it was 30. (Eek!!)
I do really appreciate the additional resource reference, ess. I will report back after Tuesday to let you know if there is anything clear from all of this. Once I hear the MRI results, I think things will fall into place.
Cheryl
I spent a few more minutes looking into this. From
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2824952/ (2009)
Establishing CSF markers that permit evaluation of the various biological processes in multiple sclerosis remains a challenge. Of all the biological processes, inflammatory markers are probably the best identified. Detection of oligoclonal immunoglobulin bands in the CSF is now established as the single most useful laboratory marker in the CSF to aid in the diagnosis of multiple sclerosis. Markers of demyelination, remyelination, neuro-axonal loss, neural repair and regeneration, and astrogliosis are only now being recognized. A good surrogate for any of these pathophysiological processes has not been defined to date.
...Presence of OCBs in the CSF is indicative of abnormally increased synthesis of intrathecal IgG. Often, but not always, this finding is associated with an elevation of IgG index and 24-hour IgG synthesis. While the latter two measures are quantitative, definition of IgG bands is a qualitative measure of the IgG produced, namely, an evaluation of the charge heterogeneity of the intrathecal immunoglobulins. Although quantitation of IgG bands can be quite readily accomplished, there is little value in this exercise as the number of bands seldom correlates with the degree of disability. Instead, it may be an indirect measure of the duration of the disease. Bands that appear seldom disappear; new bands appear over time and as the disease endures, the number of bands also increases. Although there is evidence that the number of bands seldom correlates with disability, there is some evidence to suggest that the disease is milder in band-negative patients, who comprise < 3% of all MS patients.[14–16]
From me: Note that this article does not reference any data indicating that the higher the number of o-bands unique to the cerebrospinal fluid, the more likely it is that MS is present, nor does this value correlate to degree of disability.
The following is from Quix, who unfortunately no longer posts here. Quix is an MD, a former pediatrician, whose MS forced her to cease practice. However, her invaluable contributions to this forum over 5 years or so are what drew me and many others in.They formed the basis for our wonderful Health Pages, now defunct by MedHelp edict, as are all MH Health Pages. Nevertheless, Quix's understandably-worded explanations can absolutely be relied on. Use the spyglass icon at the top to find her contributions on all MS questions.
http://ww w.
medhelp.org/posts/Multiple-Sclerosis/Oligoclonal-Bands---What-are-they/show/1468270
Quix too emphasizes o-bands unique to the spinal fluid, no emphasis on greater numbers.
ess
lol mushy peas were for a good cause after all :D
Diagnostically the higher oband numbers 'unique to the serum' are often associated with the progressive types of MS but technically, without any obands unique to the serum, you don't actually fall in the distribution for MS.
The totality of your results do matter but probably not in regards to MS, i do think your high WBC with your other CSF results may actually be more pointing towards an infection or even one of the other autoimmune inflammatory conditions, it's definitely proof that something is definitely going on and your LP may even turn out to be the key......please let us know what your neuro has to say.
Cheers......JJ
Thank you both. Both of my questions have been an attempt at understanding if there is significance in the numbers beyond knowing they are high. My analytical brain wants to know where I fall in the distribution and if it even matters.
I guess I will find out my neurologists thoughts soon enough. She doesn't specialize in MS, so depending on her impressions, I may need to wait a bit longer for a 2nd opinion anyway. Perhaps I should be prepping myself that Tuesday may not bring a conclusive Dx at all.
I appreciate the responses. Really sorry about the mushy peas, JJ!!
Actually it's the other way around--0-bands unique to the spinal fluid, not found in the blood. As far as I know, more than 2 (or 4, if you believe Mayo, which I don't) is all that is needed to point towards MS, and higher and higher numbers don't scream MS more than 3 do. But assaults to the blood-brain barrier must come from something, of course, and LP results are one way of visualizing them.
If other evidence from lab tests and imaging, MRIs, and a thorough neurological examination show CNS damage, and no other causes can be found, then the positive LP is more or less icing on the cake for a diagnosis of MS. Not necessary but certainly highly indicative.
ess
Hi Cheryl,
To be honest, i made my brain turn into mushy peas lol trying to make sense of your other LP result question, in the end i still wasn't sure the way I understood it could be right without more info........you are saying that even though the results are high (above normal range), and 14 obands was found in your blood, you didn't actually have any obands at all found in the serum, right?
Only the obands 'unique to the serum' is relevant to MS and if your saying you don't have any in the serum, the obands you have wouldn't count with MS, so basically your LP results wouldn't be useful 'additional' diagnostic evidence that leans your diagnosis more towards MS.
Keep in mind that with MS, only the 2+ (mayo 4+) number of obands 'unique to the serum' would be classed as positive and none in the serum would be negative but a negative LP still doesn't actually rule out MS.
Obands are the product of inflammatory activity by the immune system, and with the addition of you having a high WBC, then from my understanding that 'could' actually mean your LP results are indicating something else is going on........so I think it would probably be a good idea if try to remain open minded at this stage!
Cheers..........JJ
I should have mentioned that the MRI results were from 2014; I am waiting on new MRI results that were done this week,