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Old 07-13-2012, 04:09 PM   #1
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CSF Results

The doctor called with the results today. She said it is positive for O Bands. This was also done while I was in the hospital weeks ago but the results were not given. I guess this is it then....MS...even though I have not been officially diagnosed. But lesions in brain and spine with one slight enhancement seen at T3 with contrast....what else could it be? I have to wait to see if the MS clinic will accept me. She says it takes a while for them to get back.

All 3 of my children now knows it could be MS. That one son I would have preferred to talk to in person but it was not possible. I don't know how much difference it will make but he wants me to come to the US to see a specialist which is harder to see here. He will add me to his insurance.

How do I feel? It is what it is. If this is really it, one thing I know is that, I have had it several years as most of my symptoms started over 20 years ago. I dismissed them as caused by stress/nerves and the fibromyalgia.

 
Old 07-13-2012, 04:13 PM   #2
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Re: CSF Results

Please remember that the diagnosis for MS is not based on one specific test. O bands mean something is "up", but you have to have a diagnosis of MS based upon eliminating all other possibilities.

It is looking more like MS, but please know that you have a way to go yet.
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Old 07-13-2012, 04:16 PM   #3
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Re: CSF Results

HI Preserved,.

Would you believe that just because you are positive for OBands, it DOES NOT mean you have MS?

Oblinocal bands (Obands) are indicators of a autoimmune disease but are prevelant in almost all autoimmune diseases including Lupus, Rheumatoid Arthritis and many others...

Having Obands is not even criteria for diagnosing MS. In fact, 15% of MSers do not have Obands..I dont.

Do not put the cart before the horse. okay?? Even if it is MS, it doesnt change who you were 6 months ago or 6 weeks ago. It will not change who you will be 6 months from now or 6 years from now! There are so many WORSE things to have than MS....this is a very manageable disease!

Its good that you told your children; however its not something which should be life changing for any of you......it really isnt going to change your life. You already have the aches and pains, and you will continue to have good days and bad days, but youre not dying from this and you will live a very long life without compromise- besides having to take better care of yourself! You learn from having MS to listen to your body. TO know when you need extra sleep or to call it a day...you learn what your triggers are and how to avoid them and none of this happens overnight, but it DOES happen.

Try to take this one day at a time...Obands is an indicator, but far from a diagnosis.

Nikki
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Old 07-13-2012, 05:14 PM   #4
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Re: CSF Results

MsNik, thanks for your response. I know the Obands occur in other auto immune diseases but considering my symptoms and the MRI results I kind of feel that it is MS. I look at some of those other diseases and don't even want to know what they are...ok I know Lupus and RA. MS is way more manageable and less frightening than a lot of diseases.

Just as you say if it is MS it won't change who I was 6 weeks ago and I take consolation in the fact that if it is I had been living with it for years without knowing..so yes there won't be much difference. I have been already living/pacing myself according to symptoms the last 6 years. Fibro makes me tired and hurt so I paid for it for days if I over do it. I already use a wheelchair when travelling due to the degenerative disk disease. I wake up in panic each morning due to the PTSD. I found if I go to bed singing a song I wake up singing it and that helps with the panic.

Two of my children are adults and working and the 18 year old preparing for university so it won't affect them. I live alone with the youngest (girl) who knows my limitations and a very supportive daughter. The other 2 (men) are in the US, one a pro athlete. I did not know my daughter had already told him the probable diagnosis so he did his research and told me "Mom, it just means you will have some bad days and I will be here for you".

I will be okay and life will continue. It was more frightening when I did not understand.

 
Old 07-13-2012, 06:32 PM   #5
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Re: CSF Results

Preserved-
I found this in one of your earlier posts- you wrote this;

I saw my PCP this evening and just as we were in the room the results came from the hospital. She is a nurse practitioner but I am comfortable with her plus there are doctors also at the clinic.

The Thoracic and cervical without dye showed zones of T2 abnormality size 3mm from T2 to T4 also at C7 and T11 3mm also. However with dye it says no abnormality was noted in the cervical and only mild enhancement noted at the the T3 level. No abnormal enhancement at the T11. Findings are felt to be most likely on the basis of demyelination in the spinal cord.

Brain: Without dye: Approximately 7 or 8 nodules of periventricular and increased flair and T2 signal are identified especially in the left hemisphere plus cysts and polyps in the sphenoid sinus.

Brain with dye: Previous examination showed a few white matter suspicious for demylinating disease. After administration of contrast, material fails to identify any abnormal enhancement in any of the patient's intra axial nodule of increaased flair signal. No abnormal intra cranial focus or enhancement is identified.

She conferred with a doctor at the clinic and they both agreed that the brain MRI with the dye does not indicate MS. She is not ruling it out and will refer me to a neurologist which will take about 3 months. She however thinks a lot of my leg symptoms has to do with the degenerative disk disease. She also found it odd that the lumbar spine result said no stenosis when I did one in 2006 and one in 2009 that showed stenosis of the lumbar/sacral region and stenosis gets worst not better or disappear.


I want you to take a breath, and go back and think about what this means. You do not have a definitive diagnosis- you do NOT meet McDonald criteria, unless I am mistaken, and more information has come to light since this update? There is no way that you will get a MS dx based on this MRI report....The fact that your contrasted MRI does not show any enhancement means that this is NOT what is causing your symtoms at this time. You have every right to be scared- and anxious- but you cannot jump to conclusions that Obands, or anything else which has come back is definitive for MS.

I know you have alot of faith and its going to take ALL OF IT to get you through this overwhelming time. Please use that faith to believe that there is a strong possiblity that this is caused by your spinal issues...it may take a very long time for you to get a positive dx, and hopefully that dx will not be MS, but it sounds like you have an amazing support system, and amazing kids. No matter what happens, you will survive this.

I am SO on your side...and very concerned that you are making your symtoms worse by being so overwhelmed by this. I too, am going thru a "thing" right now, where I have to remind myself daily that "it is what it is" and there is nothing to be gained by worrying. Thats why we are all here, to get the support we need. Please know that you are in my thoughts and prayers- and that I sincerely hope that you find out that its not MS.

Nikki
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Old 07-13-2012, 09:54 PM   #6
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Re: CSF Results

MsNik, thanks again. Okay...BIG BREATH!! I so agree with you. There is no new information that you don't know of. Coincidentally today, I was assessing what facts I have so far and the lack of enhanced lesions in the brain stood out and only slightly enhanced at the T3 also stood out. My understanding is that symptoms are based on where active lesions are and the nerves on the spinal cord that would give rise to symptoms below my waist such as my legs are in the lumbar region. I know the brain is also involved but none was seen there. So yes I do believe something is amiss. That is what baffles me. Not knowing what it is, is disconcerting.

I am happy I can get support here. For the most part I am okay most days but there is a day here and there that I do get anxious but I am trying my best. I do need a second opinion and since they won't look further here I am glad my son can help me to get help in the US.

I am sorry for whatever is causing you angst/discomfort right now and pray that things will get better for you. You have been a tower of strength and support to so many of us here. You are a strong woman and I have no doubt you will make it over this bump. Thanks for your prayers and likewise you are in mine also.

 
Old 07-14-2012, 06:07 AM   #7
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Re: CSF Results

Lesions, both active and old, can affect you. A lesion in your brain could affect only a specific area below your waist. A lesion on your lumbar may or may not affect you below your waist. It does not appear logical, but much of it is based on how we are "wired", how our bodies react to the lesion or scar tissue, or how well our bodies can bypass the problems.

What a blessing to have your son in a position to be able to get you some help. I hope that you can be attended to in a professional manner and provided with the answers you need and deserve.
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Old 07-14-2012, 10:39 AM   #8
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Re: CSF Results

MsJayhawk thanks for your response. I keep learning. Some of what I concluded was based on my long learned knowledge of the Nervous system in A and P classes.It was not a specific area below my waist but literally everywhere that went numb down to the soles of my feet and on both sides. Guess I will stop speculating and leave it to the pros.

It is indeed a blessing to have my son in the position he is in to help me. My PCP felt something was amiss with the lumbar MRI showing no stenosis when it showed in 2006 and 2009 and my history of DDD but she says they won't re do the MRI if she asks. That's the system here so it will be good to be able to get a second look in the US.

 
Old 07-14-2012, 11:52 AM   #9
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Re: CSF Results

LOL, Speculation is something which follows us through limbo land. It can be either healthy or unhealthy depending on its grip on our life. I think your intuition is a better indicator. Had I had better intuition I might not have missed the clues in 1977. Guys do not have a great gift of intuition. Is it any wonder that God had to literally write a message on the wall for the king of Babylon!

We will be with you each step of your journey. You are near the end of limbo land already.
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Old 07-14-2012, 01:35 PM   #10
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Re: CSF Results

Addition to General results:

MsNik you had asked if there was anything new. The only result I omitted was that of the lumbar spine which showed:

Broad disk bulging and hypertrophic facet disease from the the L2 to S1 and Tarlov's cysts noted in the sacrum.

Impression: Evidence of Spondylosis but no evidence of significant cauda equina syndrome or other significant stenosis.

 
Old 07-14-2012, 01:50 PM   #11
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Re: CSF Results

Hypertrophic Facet Disease presents with or can present with enlarged facet joints which when they enlarge can put pressure on the nerves within your spinal cord resulting in pain. Some of your symptoms may be related, but it does not explain away all of your concerns.
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Old 07-14-2012, 05:41 PM   #12
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Re: CSF Results

Preserved, what can I say? You have all the obvious signs of spinal disorders and some of the signs of MS....we constantly talk about how signs of MS really are a 1:400 chance of being MS (in the end) and you are one of those cases, that until all the testing is ruled out and something definitive shows up, you wont know...

i do feel for you. Im sure you are scared and anxious- who wouldnt be? Im sure that your children are being great- but also are hoping for answers! My heart goes out to you...

Please keep us posted. There is nothing we can do now but wait with you and send prayers out for your strength and reduced pain..
Hugs my friend.
Nikki
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Old 07-15-2012, 12:26 AM   #13
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Re: CSF Results

Preserved60, do you have more detailed results than just that you are O-band positive?

Do you know how many O-bands were present? There are 5 patterns that can be seen in the O-band test, and only 2 of them are seen in MS. Using which method was your test performed? There are two methods - agarose gel electrophoresis (AEG) and isoelectric focusing (IEF). I would expect though AEG not be used nowadays at all. AEG tends to show much fewer O-bands.

When they did cerebrospinal fluid analysis, was the IgG index abnormal? If you don't know, you can calculate it yourself if you have IgG + albumin levels for both CF and blood serum.

 
Old 07-15-2012, 10:08 AM   #14
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Re: CSF Results

MsNik, this is a mystery that will take time and the right medical tools/personnel and knowledge to unravel. I won't even try to figure anything out anymore as it only adds stress that I do not need. My faith will take me through this along with your prayers and the prayers of many others. It is what it is and that I don't know yet. I will do my part, acknowledge and leave what I cannot do or have no control over. My Lord will take care of everything.

Thanks for your support and prayers and I will definitely keep you all up to date.

 
Old 07-15-2012, 10:22 AM   #15
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Re: CSF Results

Wildhorse64, thanks for responding. I have no more information other than that it is positive. My doctor said she is not used to just a positive result and so sent for the details...I imagine of what you are asking. More than a week later and she has not received any. It was the same with the lumbar MRI. A review was asked for and none sent. I am now convinced I need a second opinion and will be going to the US soon. Thanks again.

 
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