Is this good news or bad news?

I'm going for a second opinion on an ALS diagnosed. My nuero just wrote a quick note on my spinal tap results before he went on vacation.

His nurse and on call dr don't know what he meant when he wrote:

"Your spinal fluid showed immune bands that were present both in spinal fluid and blood work. This is more suggestive of a systemic (whole body) immune process instead of a primary CNS (brain) autoimmune disease."

Does this mean he doesn't think I have ALS!?!

Don't know Dear. Seems like he would have said something to that affect to you. If his nurse and on call doctor don't know then, who does? When is your next appointment?

NotALS,
Are you no longer being treated by a Lyme specialist? Are they reconsidering? Keep us posted. No clue what the above means.

I don't know what he means, but I think its a big deal. My doctors searched hard and long for any sign that I had an autoimmune process going on. That you're showing something in your spinal fluid as well as your blood labs, is a solid indication that you have an autoimmune condition, regardless of the specific name attached to it. You know how some people refer to false positives to antibody testing? Well, for you to have it both places is a way to show that you most likely do not have a false positive.

Such huge good news! Autoimmune will respond to treatment. My interpretation of him specifying that it is not just confined to CNS is pointing out you have body wide response may be his way of saying "not MS, and maybe not ALS" (?) Trying to compare it to motor neuron diseases, PLS is CNS, PMA is not CNS and ALS is both upper and lower neuron involvement.

MS involves inflammation, and it shows up in spinal fluid. But, MS is a Demyelinating disease, and it affects only central myelin, So, its a CNS disorder. Whether that means he thinks its not MS, I don't know, because, people with MS have symptoms so similar in many ways to MND...


Have they tried aggressive immune suppressants with you? One of the ways my doctors tried to uncover an underlying auto immune condition for me, was, after increasingly strong immune modulation therapy did not have an affect (Methotrexate, Plaquenil, and Prednisone in varying strengths) they finally resorted to a two week trial of very high (60mg) Prednisone a day, and when I had absolutely no response, everybody agreed, including the doctors at Hopkins, that I did not have an autoimmune condition.

If this has not been part of your diagnostic process, then, autoimmune has not been completely ruled out (IMO) and, now that this is showing up in your testing, you're bound to have some sort of inflammatory process going on. I'm not saying it means you don't have ALS, but, they can't say you DO have ALS unless you're treated for the autoimmune, and you don't have improvement.

Good luck! I hope the culprit is found, and its not ALS after all.

I think Rose said it best, and my 2 cents worth of opinion is that I'd go back and look at Lyme Disease again... have you had the Western Blot test? Check out the Lyme boards Lyme dot net I think is one that I looked at. It sounds like its something more treatable than ALS at least! Good luck!

That is good news in relation to not having ALS, as Rose said. Zaphoon has just had the same result and has discussed it on the pls forum, if you want to go have a look. Congratulations

The bands found in your csf and blood serum are a big find. Those oligoclonal bands are present in both if you have some sort of autoimmune or inflammatory condition going on. The bands may be identical or dissimilar.

From what I've read, if the bands are in your csf but not your serum, it could be indicative of MS. If they are in both and are identical, it points more towards autoimmune disorders. The following may be of interest (copied/pasted):

The presence of oligoclonal bands (OCBs) of immunoglobulin G (IgG) in CSF provides evidence for the occurrence of a humoral immune response, but it is not always appreciated that the oligoclonal IgG may have originated in the serum. To determine the diagnostic significance of serum OCBs 146 patients with serum OCBs were identified among 1874 patients with suspected neurological disorders (7.6%). Clear diagnoses had been made in 112 of these patients: in 56 identical CSF and serum bands were present, revealing a systemic immune response, while in 46 additional unique CSF bands indicated that intrathecal IgG synthesis was also occurring. In the first group neoplasia and peripheral neuropathies accounted for over 50% of the diagnoses, infections and systemic inflammatory disorders for 32%, and multiple sclerosis was diagnosed in only one case. These figures contrast considerably with those reported for patients with CSF OCBs alone. Diagnoses in the second group of patients, with unique CSF OCBs in addition to serum OCBs, resembled those among patients with CSF OCBs alone. Examining CSF and serum in parallel for OCBs of IgG provides more diagnostic information than examining CSF alone, and the latter is potentially misleading.

Here's another copy/paste blurb on the subject:

The IgG immunofixation patterns of CSF and serum from the same patient are then visually compared.
This allows detection of oligoclonal banding that represents intrathecal synthesis of immunoglobulins. Five different patterns may be seen after the isoelectric focusing (see Fig. below):
Type 1: Normal CSF, no band present in the CSF.
Type 2: Intrathecal IgG synthesis. CSF with restricted oligoclonal bands not seen in the serum, found in multiple sclerosis.
Type 3: Intrathecal IgG synthesis: CSF with restricted oligoclonal bands with additional bands seen in both the CSF and serum. It is found in multiple sclerosis and brain inflammation in systemic disease, for example, sarcoidosis.
Type 4: Identical oligoclonal bands in the CSF and serum. Monoclonal bands found in systemic inflammation, for example, Guillain-Barrè syndrome.
Type 5: Monoclonal bands in both the CSF and serum. It is found in myeloma or monoclonal gammopathy of uncertain significance.

And finally, click on this url for a graphic on the bands:Oligoclonal Band | Antibody Patterns

As a Post Script, go to this url for a really nice, clear graphic at the bottom of the page:http://www.interlab-srl.com/microgel08/microgel-csf.htm

rose said:

Trying to compare it to motor neuron diseases, PLS is CNS, PMA is not CNS and ALS is both upper and lower neuron involvement.

Click to expand...

PMA is a disorder of the CNS. The lower motor neurons are located in the spinal cord -- specifically, the anterior (ventral) horn of the spinal cord. Last I heard, the spinal cord was considered to be part of the CNS.

If you have a reference that states otherwise, I'd be interested in seeing it.

At the risk of sounding stupid, I have a question.
If a person has an autoimmune disease could they fail the emg's?

You are not being stupid!
Yes many autoimmune conditions with a neurological component, will have various abnormalities that can show up on an EMG.

What Aly said...

Trfogey,

I stand corrected. It is my understanding that motor neurons connect the brainstem and spinal cord to muscle fibers, and their job is to convey information out from the central nervous system to muscles (or glands) - And the reason I qualify it with glands, is the extreme dryness I have with secretory glands that are innervated by the #7 facial nerve.

But, when I was writing my earlier response, I was thinking upper versus lower, (upper sending messages to lower )and confused that with cns versus peripheral ( peripheral NOT being part of the CNS, and sending messages to the CNS).

I do apologize, I was writing my response amid almost complete chaos here in my home, as the guys are taking this weekend to make major changes to our kitchen. Notice how that sentence kind of morphs into comparing upper and lower? Its not real excuse, but I was answering too many questions here at home while trying to type a coherent response to what I believe is encouraging news for her.

Susan, Yes I failed an EMG but yet that did not make my doctors throw up their hands and say it had to be MND. We still explored autoimmune for a few months more.

Rose, did you try antibiotics?

No, No one suggested it, no past history of tick bites (although I had two this summer!) None of my blood labs supported any sort of indication to try.

Is your new neurologist still away on vacation? It must be maddening to have to wait like this!