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O bands
My doctor said my LP had 8 O bands. When he called me several weeks ago he gave me a beyond the shaddow of a doubt DX.
That is a good thing because otherwise it meant I had been taking DMDs for 2 years for no reason.
I was dx'd without the LP 2 years ago then that dx was taken away in Feb by a different doctor.
The new doctor did the LP and said the original dx was correct.
The only reason I am bringing this up is because I know a positive LP can be caused by different things.
I am sure my MS dx is for sure now because of Optic Neuritis, a brain lesion, and clinical symptoms.??
LA
That is a good thing because otherwise it meant I had been taking DMDs for 2 years for no reason.
I was dx'd without the LP 2 years ago then that dx was taken away in Feb by a different doctor.
The new doctor did the LP and said the original dx was correct.
The only reason I am bringing this up is because I know a positive LP can be caused by different things.
I am sure my MS dx is for sure now because of Optic Neuritis, a brain lesion, and clinical symptoms.??
LA
One question: Were those 8 O-bands in the CSF only, and not in both the CSF and blood serum taken at the same time? It is my understanding that the only ones counting toward MS are those that appear only in CSF. Many people have O-bands in the CSF and matching ones in their blood serum; those are not caused by or indicative of MS. If you have 8 in your CSF but simultaneously had only 3 or 4 in the serum, it is a pretty sure thing. From my recollection, the test is positive if there are two unique O-bands in CSF, but some places (Mayo, maybe? Memory's got the day off.) require up to four.
Nevertheless, you sound like a pretty solid case for dx from everything else you've described, IMHO.
Question (curiosity): between differing docs & diagnoses, were you able to keep going with the DMDs, or did you have to stop until rediagnosed?
Nevertheless, you sound like a pretty solid case for dx from everything else you've described, IMHO.
Question (curiosity): between differing docs & diagnoses, were you able to keep going with the DMDs, or did you have to stop until rediagnosed?
Hello,
I first went to an MS specialist who dx'd me and I was started on DMD's. He retired and I had to find another doctor. This one was a regular neurologist. He un dx'd me without doing an LP and stopped my DMD's.
He was very rude and my husband and I decided not to go back to him. Even though he un dx'd me he said I did have the clinical symptoms but he was sure it was all in my head.
I went to a neuro a friend with MS recommended and the first thing he wanted was an LP.
I actually had 8 O bands in my CFS with none in my blood serum. I talked to the nurse about this yesterday so I could get a better idea of what is going on.
She said no one should even have one O band in the CFS and I have 8.
LA
I first went to an MS specialist who dx'd me and I was started on DMD's. He retired and I had to find another doctor. This one was a regular neurologist. He un dx'd me without doing an LP and stopped my DMD's.
He was very rude and my husband and I decided not to go back to him. Even though he un dx'd me he said I did have the clinical symptoms but he was sure it was all in my head.
I went to a neuro a friend with MS recommended and the first thing he wanted was an LP.
I actually had 8 O bands in my CFS with none in my blood serum. I talked to the nurse about this yesterday so I could get a better idea of what is going on.
She said no one should even have one O band in the CFS and I have 8.
LA
Now you can put all those doubts aside and get on with whatever it is you want/have to do. I'm glad this new neuro has removed all doubts.
- Lu
- Lu
I just can not figure out why the other two neuros did not do the lp. I suppose the MS specialist was very sure of his dx. He is very experienced.
The second guy was just lazy.
My current neuro said he would figure out what was going on. Funny thing is he was not at all sure it was MS until that LP came back. He was thinking along the lines of Lupus.
My husband and I are planning a weekend away next week. Problem is we just need to figure out where to go! We are so used to doing kid things. I am a beach person. I'd love to go horse back riding but I am not sure what my husband would like to do.
We are very close to Chicago. We have been there many times. Maybe we should go to the Aquarium.
LA
The second guy was just lazy.
My current neuro said he would figure out what was going on. Funny thing is he was not at all sure it was MS until that LP came back. He was thinking along the lines of Lupus.
My husband and I are planning a weekend away next week. Problem is we just need to figure out where to go! We are so used to doing kid things. I am a beach person. I'd love to go horse back riding but I am not sure what my husband would like to do.
We are very close to Chicago. We have been there many times. Maybe we should go to the Aquarium.
LA
I last visited the Windy City in 1989, so I doubt I'd be much help.
Are you mentioning this because you are concerned with MS having an impact on activities? Again, I'm no expert, but I'd say you can safely keep doing all the things that you've been able to do, except those things that you know will cause you trouble. Not everyone with MS has increased symptoms in the heat, for example, so that's not a major concern for many.
Whatever you do, enjoy your getaway. Life offers us all too few such experiences, making them seem priceless when they do occur. Don't let anything take that away from you.
Are you mentioning this because you are concerned with MS having an impact on activities? Again, I'm no expert, but I'd say you can safely keep doing all the things that you've been able to do, except those things that you know will cause you trouble. Not everyone with MS has increased symptoms in the heat, for example, so that's not a major concern for many.
Whatever you do, enjoy your getaway. Life offers us all too few such experiences, making them seem priceless when they do occur. Don't let anything take that away from you.
I think we expect doctors to be infallible, and neurologists more so - after all, they deal with diseases of the brain, so they should be really smart.
It sounds like that MS specialist knew what he was doing - too bad we can't have more people like him. I have to think that the training for neurologists on MS is just not good enough - or it's outdated.
It sounds like that MS specialist knew what he was doing - too bad we can't have more people like him. I have to think that the training for neurologists on MS is just not good enough - or it's outdated.
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