[JoanB]

Hi all,

I just got some lab work back from a lumbar puncture, and it seems to me that it's saying I have a positive result for MS, but I'm not 100% sure. Sometimes they tack statements onto the end that are an explanation of what the test itself means, not necessarily what the patient's results show. I'm seeing "normal" on one hand, but it still seems like they're saying yes to MS. Can anyone make sense of this?

The IgG index is normal (<0.7) and does not indicate intrathecal IgG synthesis. Both the CSF and serum were analyzed by isoelectric focusing for the presence of oligoclonal IgG bands.

The patient has an oligoclonal CSF response, with the paired sera showing a normal polyclonal response.This pattern of intrathecal synthesis is seen in multiple sclerosis and some infections. CSF oligoclonal bands are found in 83% to 94% of patients with definite MS.

Thanks!

[Erika]

Hi Joan,
Good to meet you.

Both infection and MS can prduce a positive oligoclonal CSF response.

I think that what has been writtten means that the normal IgG (<0.7) indictes no CSF infection as a the reason why there is a oligoclonal CSF response. Although not conclusive for diagnosis as a stand alone test, that leaves MS as a reason for the positive result more likely.

Have you had other testing done (MRI, evoked potentials etc)?

With love, Erika

[JoanB]

Hi Erika,

Nice to meet you too, and how kind of you to take your time interpreting my results. To answer your question, I had thoracic and cervical MRIs recently that showed lesions:

Multiple T2 hyperintense lesions within the cervical and thoracic
cord suggestive of a demyelinating process such as multiple sclerosis.

Last year, I had a brain MRI that showed no lesions, but some demyelation and I had a normal CSF except for elevated protein. At that time, the doctor ruled out MS, but I guess now that it looks pretty much like it is. It's not good news, but after trying to get doctors to take notice and dismissing my concerns that something is very wrong for over 5 years now, it's also partly a relief. At least now, it seems I have a 'real' disease, instead of just being whiny and lazy.

I'm hoping that the doctor at Cleveland clinic, who ordered these most recent tests, contacts me this week.

Thanks again,

Joan

[NurseNancy]

one of my pet peeves is when drs are dismissive just because they can't see or measure something.

i'm used to getting an oligoclonal band #. i thought anything 2 or more indicated MS along with mri's and neuro exam etc. so, i'm not used to what you described.

IF it is MS at least you can make a firm plan of care with your dr. please keep us posted.

[weetagirlywirly]

Originally Posted by JoanB

Hi Erika,

Nice to meet you too, and how kind of you to take your time interpreting my results. To answer your question, I had thoracic and cervical MRIs recently that showed lesions:

Multiple T2 hyperintense lesions within the cervical and thoracic
cord suggestive of a demyelinating process such as multiple sclerosis.

Last year, I had a brain MRI that showed no lesions, but some demyelation and I had a normal CSF except for elevated protein. At that time, the doctor ruled out MS, but I guess now that it looks pretty much like it is. It's not good news, but after trying to get doctors to take notice and dismissing my concerns that something is very wrong for over 5 years now, it's also partly a relief. At least now, it seems I have a 'real' disease, instead of just being whiny and lazy.

I'm hoping that the doctor at Cleveland clinic, who ordered these most recent tests, contacts me this week.

Thanks again,

Joan

Hello Erika,

I have seen two neuro doctors at the cleveland clinic in the last 2 months, and both have dissmissed my symptoms and said they were stress related. I was just wondering who you were seeing there.
I have been having speech and balance issues that won't go away now for some time, among many other issues including a lesion in white matter of brain on mri from september and mri of cervical spine that showed no lesions, but straightening of spine, herniated disc, and disc osteophyte complex. Neither neuro doctor would go any further with me.
I wish you luck in finding some answers.

[JoanB]

Hi weeta,

I'm the one going to Cleveland clinic; Erika was just responding to me. I'm sorry you're not getting the answers you need. I'd tell you the name of the Dr I'm seeing, but I'm not sure if it's OK or wise to post actual names here. I could PM you his name if you want.

[JoanB]

Just wanted to let all of you who've been so helpful know that I got the official word that yes, it's MS. And judging from my symptoms, I have PPMS. I have an appointment with an MS specialist here in Pittsburgh on Dec. 9, so I guess I'll know more then.

It's not good news, but after 5 years, 7 neurologists, and screaming and jumping up and down trying to get someone to pay attention, it's something. It's an answer to "When I can't walk 3 blocks or climb stairs, etc., what do I tell people? What do tell family? What do I tell employers when they see me stagger at work like I'm drunk?" At least now I have that.

[EddieF]

I didn't see anyone mention Myelin Basic Protein.
These results are MS in the worst degree for me at the onset.
Years & many meds later i'm much better and haven't repeated spinal tap.
Always get copies of bloodwork & mri's!

[JoanB]

Thanks, NurseNancy. I always try to remind myself that doctors are human too, but sometimes it's hard not to get mad at some of them. I've been told for 5 years that I have idiopathic neuropathy, and the only reason I got the earlier MRI & lumbar puncture is because I kept asking them for it, not because any of them thought of testing for this on their own. I saw in some notes that there "might be some weakness" in my legs, or it could just be "lack of effort by patient during examination." Arrrgggh!

Eddie, thanks for your reply too. I'm glad that you're doing better with meds. I can't find the kind of protein you're talking about. I see this one, and it is high, but I don't think it's the one that you mean:

Component: Protein CSF
Standard Range: 15-45 mg/dL
Your Value: 53

I think I'm going to call the Cleveland Clinic tomorrow. It's been a few weeks (9/13) since I got the lumbar puncture.

[JoanB]

Oh, Nancy, I just reread your post about the oligoclonal band #. Mine was 8. It sounds like that's pretty indicative, hunh?