Quix,
Thank you for your response, you definatly gave me some questions to ask my neuro, I even took notes lol so I don't forget.
Slightlybroken aslo gave me the name of a neuro that she has heard very good things about that does take my insurance about an hour or hour and a half from where I live but he would be worth the drive if he does what needs to be done.
First I will see what my neuro derives from all of the tests and go from there.
I will post tomorrow evening on how my appt goes with him, I go at 5pm my time so I guess that is 2pm your time. Hopefully I will have some news!!
Paula
Paula, you and I and Heather has identical results in our CSF. I also had an elevated IgG Index and only one unique O-Band. My neuro said that those results pushed him over the edge in the diagnosis. He would have "liked" to have seen more O-Bands (at least one more), but his attitude was that my results were abnormal and with the rest of my history and my exam it was enough to call the diagnosis. At that point I only had one lesion on my MRIs.
The elevated IgG Index IS considered a positive LP result. It's just not as specific to MS as O-Bands are. The problem is not all people with MS show the heavy signs of immuno-inflammation (lots of lesions and O-Bands). We are a subset of the MS crowd with a little evidence here and there. When the symptoms and exam abnormalities are more remarkable, it is easier to accept the weak "paraclinical" evidence of the MRI and LP.
If your neuro worships absolute findings or is a fan of the Mayo Clinic those results might not be enough. But, I urge you to question him about the likelihood of having those results AND your clinical findings AND the abnormal MRI. The good doctor has to put all the results together and formulate an opinion. You can even ask him, "Doesn't this LP evidence have to be looked at right along with the lesion on the MRI and my clinical picture? If you have ruled out the mimics, then what do you have left except MS??"
My diagnosing neuro put it this way. "It's not a Slam Dunk, but it is sufficiently a strong enough picture for me to call it MS and recommend treatment."
If that guy won't do it, march on to someone who will.
Heather,
I am hoping you are right that he will take a deeper look into it without the 2 Obands. The IgG is high so hopefully he will derive something from that but I won't hold my breath, however I won't let him just say lets wait and see either. I will push the issue of getting to the bottom of what is going on with me.
I use to be one to sit back and do exactly what the doctors told me, but I have learned from experience that nothing will ever be resovled if I just stay quiete. I am a very nice person unless I am pushed to be otherwise and even then I am nice I just make my point.
I will definately post what he says to me, my appointment is at 5pm on Thursday so look for a post in the evening.
SB,
I am just nervous because I already have a feeling what he is going to tell me and I will have to push him to investigate further. I don't like being forceful but I have learned along the way that, that is the only way to be with him if I want him to listen.
I will post after my appointment to let everyone know what he says.
Thank you both very much the support I have found here has means more to me than words can say.
Paula
I would be nervous too...having evidence, but not knowing how the doctor will go..and wanting answers. This whole journey has a way of working on your patients.
Take a deep breath, and hope for the best...and the best outcome for you would be a DX. Listen to Heather...she's helped me a lot along with many others on this forum.
Remember to fill us in when you get back okay?
I had ONE O band in my CSF and elevated IgG. With the lesions in my brain and spinal cord, this was enough for my Neurologist to say that he was positive that I had MS. He said that no matter how many O bands you have in your CSF, they are not suppose to be there. This was almost 15 years ago.
I think alot depends on the other findings, such as a positive MRI, with the lesions in all the right places, especially with a spinal cord lesion. This is what I understood from the Neuro.
Paula, one O band and a high IgG demands further review from your Neuro. Please let us know about your upcoming consult with your doctor, about your LP results. I in fact, would be most interested to hear what he has to say.
All the good luck in the world, coming your way. All of us are always here for anyone in need. Please let that bring you some comfort, as it did to me when I joined this Forum over 2 years ago.
God Bless,
Heather
I am getting nervous, tomorrow is my appointment with my neuro to go over the results and see what his take is on the LP results.
I know that he is going to tell me "well its not MS cause there is only 1 Oband and we need 2 or more for a positive result.
He said the same thing with my first MRI that only had 1 lesion, but then he started changing his tune and told me that he is pretty sure it is MS.
I just want a name for what I have so I can get on the right meds to maybe help alot. I haven't felt normal in a while so I am not sure what is going on. Before I use to feel bad and have symptoms then they would go away and I would feel good for a while and now I just never feel good, ok well sometimes I do in the mornings until I get moving around.
Anyway wish me luck with my neuro appt tomorrow, hopefully I will have some news to share.
Paula
SB,
I have lesions on my brain and spine, when he finally started listening I told him about the incontinence issue and when I bend my head forward I get the electric shock doen my leg.
But it does make me feel better that Quix had the same diagnosis, not that I want MS but a diagnosis would be great so I can get on some meds that will help me. Maybe Quix will chime in and give me some details.
Paula
I hope your doctor does get to the bottom of this and give you a name to what your fighting. If he's a smart neuro, he'll look at your whole clinical picture and diagnose you.
I'm not sure if this will make you feel better or not..but Quix had 1 O band and an elevated IgG index as well.
To me, your results of your LP, with your clinical picture, and your symptoms should be enough to DX you..I'm sure your doctor would like to see a slam dunk with 2 O bands, but I think your body is showing some evidence. I wouldn't classify your LP as a negative result, you know?
What does your MRIs show (brain, spine)? Sorry I can't remember.
Thanks Shell and Red,
Shell-Thanks for the info on the HP I will take a look at that in a few. I go back for to review my results this Thursday.
Red-I have heard and read that 2 o bands is a positive test. With that being said I only have 1 so not sure where he will go from here. I am hoping all the tests reveal what it is that I have. Not that I want MS but I would just like to have a name for whatever is going on.
The elevated Igg is what I was wondering because I know that in active MS the Igg index is elevated but I have also read that it can be elevated in other problems as well. Hopefully this will bring some sort of answer for me.
I will be sure to report on what my neuro says Thursday and hopefully have some answers.
Hi Paula, I sounds like your neurologist is taking you serious and testing you for a number of things. In order for the CSF to be positive for MS there has to be O bands or elevated index. I have heard to be positive for O-bands you have to have more than 4, although I have heard some say 2 is enough.
The Igg index for CSF is usually elevated.
Sounds like yours is positive for MS even though you don't have the O bands.
Red
Hi Paula,
One unique O-band iin the CSF and not in the blood serum is considered a negative. I'm not versed in the IgG index, but if you can, check out our HP on this:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36
I hope Dr. gets to the bottom of all this too - when do you go back to review all your results? It sure can be real confusing. Hope this hp helps.
-Shell
SB,
Thank you for your response, I am confused as to what it all means. I just wish they could get to the bottom of what is going on with me so that at least i would have a name for what is going on with me.
Paula
In certain diseases, like MS, there can be a mild increase in the IgG in the CSF, but not in the serum. It can be elevated in immune disorders such as multiple sclerosis, transverse myelitis, and neuromyelitis optica of Devic.
Take Care