View Poll Results: Did you have O-bands at the time of dx of MS?
I was not tested/test results were inconclusive 16 27.59%
I was not tested/test results were inconclusive
16 27.59%
I did not have O-bands 15 25.86%
I did not have O-bands
15 25.86%
I had <2 O-bands 7 12.07%
I had <2 O-bands
7 12.07%
I had >2 O-bands (or my doc said the test was positive for O-bands) 20 34.48%
I had >2 O-bands (or my doc said the test was positive for O-bands)
20 34.48%
I do not know the results of the testing I had for O-bands 0 0%
I do not know the results of the testing I had for O-bands
0 0%
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Old 08-06-2008, 06:13 PM #1
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Quote:
Originally Posted by lady_express_44 View Post
This is kinda' funny, the way they have written this explanation . . . it (almost) implies that exacerbations influence whether O-bands will be found at any point in time.

I guess what they mean is that if a person (without a current dx) is currently in an "attack", that might be a good time to test them. Otherwise, it is my understanding that once we have O-bands, we always have them. That is not necessarily true for other diseases, because those people "heal" from the disease (and O-bands). . . but apparently we don't. Cherie
Cherie, when I was going through the diagnostic process I was having a severe exacerbation although I didn't know it at the time.

My neuro said we had a better chance of the LP showing something than had I not been in an exacerbation. In my case he was correct. The LP was the only positive test I had. Brain MRI was clear as was the Mylegram, VEP, bloodwork and others I can't remember.

I was dx'd based on the positive LP, neuro exam and symptoms. One year later I had my second severe exacerbation so that resolved any doubt anyone may have had, including myself.
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Old 08-06-2008, 06:27 PM #2
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I saw a graphic picture showing 1 line (blood) next to 1 line (spinal fluid).

If the bands on the line of the spinal fluid were the # of obands, I'm not kidding when I say there were 12 + showing on that page!

I'll get my neuro to photocopy it... it's kinda neat looking actually! Then I can maybe scan and link it here
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Old 08-11-2008, 11:02 AM #3
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Quote:
Originally Posted by dmplaura View Post
If the bands on the line of the spinal fluid were the # of obands, I'm not kidding when I say there were 12 + showing on that page!
dmplaura, what "other" evidence did you have at that time? Did your MRI and history also support a MS dx, even without the LP evidence?

Just wondering because you are fairly new to a MS dx, and LP's haven't been "required" for a few yrs now.

Cherie
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Old 08-11-2008, 12:50 PM #4
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Quote:
Originally Posted by lady_express_44 View Post
dmplaura, what "other" evidence did you have at that time? Did your MRI and history also support a MS dx, even without the LP evidence?

Just wondering because you are fairly new to a MS dx, and LP's haven't been "required" for a few yrs now.

Cherie
I had the MRI first, with and without contrast. Which lit up like an xmas tree, showed 'lesions in the active phase', 'demyelination process', 'multiple ovoid hyperintensities'.

I had several symptoms that came and went. The 2 most convincing of everything were L'Hermittes and the 'girdle band' sensation. I also had severe vertigo (and my ENT doc had ruled out any ear problems), loss of taste/smell, muscle spasms in my face on 1 side, blurred vision that came from nowhere (woke up 1 day and it was there). Oh, and for probably 3-4 years, I had numbness off and on in my pinkie and ring fingers on both hands. They suspected posture, they fixed my 'station' at work, and that didn't fix it.

My family history had no one previously dx'ed with MS. However, both my mother and father's sides are from European decent entirely. Scottish, Irish, English. Suspected Norwegian/German involvement as well.

Blood work clear (many many many vials of it, surprised I was not left dry lol). 2 CT scans, clear. Xrays of everything from head to pubic area. Ultrasound of my stomach (I had stomach pains that came and went in a period of 1.5 months).

I 'failed' the evoked potentials (so to speak). Hypomobility lower body. Hypermobility upper body. Unsteady gait. I also had areas where I could not detect cold/hot/pain sensations on my legs.

My neuro is 'Mr. Thorough'. He did the LP I believe to fully investigate the entire picture. I didn't mind. Heck, if that test was going to further show 'proof' of MS, I'm all for it.

I'm not sure if he does an LP on every person he sees in my situation. I didn't have a family doctor when I met him. I sure do now. Perhaps because of the lack of 'history' on me, he went through every step to ensure he could look me in the eye and say, "95% sure".
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Old 08-12-2008, 09:41 AM #5
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Quote:
Originally Posted by dmplaura View Post
I had the MRI first, with and without contrast. Which lit up like an xmas tree, showed 'lesions in the active phase', 'demyelination process', 'multiple ovoid hyperintensities'.

I had several symptoms that came and went. The 2 most convincing of everything were L'Hermittes and the 'girdle band' sensation. I also had severe vertigo (and my ENT doc had ruled out any ear problems), loss of taste/smell, muscle spasms in my face on 1 side, blurred vision that came from nowhere (woke up 1 day and it was there). Oh, and for probably 3-4 years, I had numbness off and on in my pinkie and ring fingers on both hands....

... I 'failed' the evoked potentials (so to speak). Hypomobility lower body. Hypermobility upper body. Unsteady gait. I also had areas where I could not detect cold/hot/pain sensations on my legs.

My neuro is 'Mr. Thorough'.
It sounds like you were a slam-dunk for MS, and your neuro was just being extremely thorough. Your symptoms/clinical exam and brain lesions would have been enough, for sure.

Once they started testing for MS, how long did it take to get the dx?

Cherie
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Old 08-12-2008, 10:47 AM #6
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Quote:
Originally Posted by lady_express_44 View Post
Once they started testing for MS, how long did it take to get the dx?

Cherie
I had the MRI done in the first part of February 08. Met with my ENT (who ordered the MRI) February 19th to hear the 'news'. My ENT and his secretary had already called up my current neuro before I even went in, so I met my neuro at the hospital on February 27th.

That day, he did the evoked (he had been over the MRI results). February 29th was the LP and the 11 vials of blood work. March 5th was my last day of 6 days of IVSM (yes 6 days!) and that's when my neuro came in and said, "I'm 95% sure this is Multiple Sclerosis and you've been living with this for at least 5 years". He didn't have the LP results when he gave me the 'diagnosis'. The MRI, symptom history, family history and evoked testing was enough for him to base his decision. The LP did indeed come back positive as well as I explained.

Talking to him afterwards, he said, "You hit the home run with your diagnosis". Meaning, I tested positive for MS in every respect.

I do love my neuro. VERY much. He's not the 'doctor in the coat'. He's the tiny, white haired man who's fun to talk to (like you're visiting a friend having a coffee and a nice chat) who you admire for his brilliance beyond his profession (we talked about MS for 20% of the visit, the other 80% was him just shooting the breeze with me). I think that's so important. Having a specialist who you can truly consider a 'friend' before a doctor.
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Old 08-13-2008, 12:03 PM #7
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Quote:
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He didn't have the LP results when he gave me the 'diagnosis'. The MRI, symptom history, family history and evoked testing was enough for him to base his decision. The LP did indeed come back positive as well ...

Having a specialist who you can truly consider a 'friend' before a doctor.
I'm glad that having it was a relatively painless procedure, and it helped provide you the confidence you needed to move forward with a treatment plan.

I had a very bad experience with my LP, so I am not so quick to recommend having it done unless it's ABSOLUTELY necessary.

I agree about the importance of having a great relationship with your doc/specialists. I LOVE my GP and neuro too . . . but I've met some quacks along the way.

Cherie
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Old 08-06-2008, 06:32 PM #8
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Cherie, when I was going through the diagnostic process I was having a severe exacerbation although I didn't know it at the time.

My neuro said we had a better chance of the LP showing something than had I not been in an exacerbation. In my case he was correct. The LP was the only positive test I had. Brain MRI was clear as was the Mylegram, VEP, bloodwork and others I can't remember.

I was dx'd based on the positive LP, neuro exam and symptoms. One year later I had my second severe exacerbation so that resolved any doubt anyone may have had, including myself.
Well, that kinda' speaks to what CayoKay posted, but it doesn't change the fact that you apparently should STILL have just as many (if not more) O-bands now as you did during that attack.

If the information I have is correct, the best time to do a LP diagnostic test is when the person has a neurological attack. That doesn't necessarily mean you didn't have those same O-bands previously, there is just more chance that more (or the first positive result for them) might "pop up" during this neurological event. Does that make sense?

O-bands in MS are "permanent" once they are there though . . . at least that's my understanding.

Cherie
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Old 08-06-2008, 07:19 PM #9
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See, I'm just over the change in my banding situation. Maybe the first test WAS wrong and I didn't really have bands. My neuro (Dr. Flip Flop aka Dr. Wishy Washy) never said how many, just that there were "bands." And the test results that I have don't indicate how many. And in February this year with the latest LP, I don't have them. Just makes you .

But I'm not going to stress over it. Not worth it!
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Old 08-06-2008, 07:41 PM #10
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I was DXed in the olden days by the results of a Myleogram and a process of elimination..

I remember my Neuro saying, protien in the fluid. I don't remember the mention of O-bands. That's the only LP I ever had.

An MRI, almost 20 yrs later, only confirmed the MS DX.
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