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. :confused:

Cherie

Hi Jowen,

Did they do MRI's of your T & C spine in the beginning . . . and nothing showed up? How long did it take before lesions were apparent?

Cherie

No MRI of the spine. In 1986 there were 2 MRI machines in the entire State and because the MRI was so new there were doubts about what the MRI was capable of showing. I had x-rays and a Myleogram instead.

I don't know when lesions finally showed because I never had another MRI until 2005.

Thanks . . . similar to my story, back in 1991. We did have available MRI's by then, but the first course of testing was always a LP or myelogram (mostly checking for mycobacteria infections, meningitis, etc.).

Chances are they'd have found our spinal lesions fairly early on, based on our symptoms . . .

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".

I had MRI's of brain and the T & C spines in the midst of my first exacerbation....no lesions. I've had follow up MRI's every 6 months/1 yr ever since and still have no lesions.

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

Were you labeled CIS, Jenn? Are you still with the same neuro that dx you?

There are other diseases that cause O-bands and similar damage/symptoms . . . so how can they be sure it is MS? I wonder how long they will let you hang onto the dx, if you don't develop lesions at some point?

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. :)

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. :mad:

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. :cool:

Cherie

Oh yeah. Don't get me wrong. I did as well.

I don't know about your area of Canada, but on the East Coast, my experience has been, "We're not too sure, but you said you have pain, here's another prescription for Endocet!".

I've now had 3 prescriptions for the stuff, as well as a 'take home' bottle from the hospital to 'tide me over' till I started IVSM. All 3 scripts came from walk in clinic doctors. :rolleyes:

Then there was neurologist who 'examined' me for 5 minutes, and took home his pretty paycheque after saying "stress".

At least 1 of the various doctors I saw during my year pre-diagnosis was nice enough to send me for xrays. :D

If that's not enough... the Carbamazepine prescription came from a doctor I had seen 1 time earlier at the walk in clinic, who I was then seeing at the hospital. He prescribed me the Endocet x2 of 3 scripts I had. :eek:

I digress. I could go on all day about this. ;)

Interesting that about 65% of us either didn't have "enough" O-bands to influence the dx process, and/or we didn't even have a LP.

Even if we only count the people that KNOW their results, it's about 50/50 on having the required amount (to influence the dx).

And, there are a large group of us that KNOW we didn't have enough to add credence to the dx process . . . yet we still have the dx.

There seem to very few people that get a dx, without very strong "other" evidence anyway; lesions, clinical testing results, clear attack history.

Based on this (which is very similar to the poll results from the other forum a few years ago), there really doesn't seem to be much point in getting a LP done, does there?

I wonder where they got the approximate "90% of those with MS have O-bands" stat? Maybe that is based on OLD (pre MRI) information, because historically they didn't give out a MS dx unless/until they saw the O-bands. :confused:

Cherie

Hehe! I thought historically they used the bathtub diagnosis... in which case, I'd have not been diagnosed myself because I can still enjoy my warm baths :)!

Like I said in my case however, my guy's just Mr. Thorough. I guess since there's no 'definitive' test for MS like blood work, he just wants to be sure he's giving out the most checked over series of tests he has available to him.

Then you wonder, perhaps he's been asked to LP new suspected cases of MS for a study?

I could always ask him! I see him next Monday. I'll write that down on the sticky note I have to take there :) I have to bring up the spinal results anyways, because I want a copy to show here!

O-Band Count
 

I had 16 O-Bands. None in the Serum. :(

O-Bands in Diagnosis
 

My STATS:
I was diagnosed with MS based on scans and OB's. I had 16 bands when tested last month. None in the Serum, all in the CSF. Im still not sure what that many bands suggests.

Chad