Hi, and welcome to the MS Forum. Free Kappa light chains (which are produced when the is an overabundance of antibodies being produced) have been shown to predict who in a group of people who have had one MS-like attack are likely to go on to develop MS. Since you have many symptoms that are very consistent with MS you are far beyond this level.
I found a couple sources online that report kappa free light chains (KFLC) are likely a very uselful test in diagnosing MS. From what I can see they can't yet be used to diagnose MS directly because there are other diseases in which they appear like Multiple Myeloma.
The negative MRI is a huge stumbling block to MS diagnosis for almost all non-MS docs and seemingly most MS neurologists even though their own literature shows that early in the course up to 10% of people have a "negative" MRI.
You say you also have Oligoclonal Bands. Do you know how many of them are unique to the CSF. The report will usually specifiy. The vast majority of MS docs accept that it takes only 2 or more to be consistent with MS.
We are sadly aware that for reasons unknown the Mayo Clinic wants to increase this number to 4 unique bands to qualify for being a positive resul for the purpose of diagnosing MS. This fits in with their apparent campaign to reduce the number of people being diagnosed with the disease.
Your symptoms are concerning and are of the type which really limits your movement. You need a diagnosis as soon as can be done. Do you know if the normal MRI is the holdup? Was your MRI done on a closed machine and using the MS Protocol?
Looking forward to your answers.
Quix , MD
I hate the fact computers can loose your replies, I wrote you a whole loooong reply pushed the send button and think I lost it. So if it go thru and get two replies, sorry. Anyway I am very glad you wrote me with the very helpful info. I had 3 MRI s done last Friday so I will get the results today. The tests were of my brain and thorsasic and lumbar spine with all tests w/wo contrast with the diagnosis for doing the tests as MS. I don't know what type of machine MRI it was. The test for oligoclonal bands just stated "oligoclonal bands present" the test for kappa free chains valve was 134 where range is 0-0.24. I've read you need to have a blood test accompanying the spinal tap. I had blood drawn earlier, and I have those tests results if it is helpful in this case. I am going to see my dr soon(cleveland clinic). When we spoke on the phone he stated that he did believe that I have MS in the early stages and that when I see him he would go over the test results and treatment plans with me. He also says that he believes its remitting-relapse. I don't understand because my symptoms are constant, not come and go. It all started in oct. I had an electric like shock run down my left leg from my neck. Very painful, lasted only a moment. That happened twice, then slowly added the symptoms within a day of left side weakness,twitching(24/7), muscle cramps in various places, several people have also noticed my slow speech and sometimes slurred, and difficult walking. All this has been constant. OT and PT are working with me and they have said I have muscle atropy in various places on my left side. They made me a brace to keep my left hand from contracting. I have the clawing effect in my left side. Now the twitches(which were only on left side) now are on my right. So now I'm afraid that it will made my right side weak (my dominant side). So with the tests results and the symptoms does this sound like MS? Is it in the early stages as my dr believes? I have a constant fear of falling when I walk and when I'm down its very hard to get up. Will MS treatment reverse these symptoms? I want to be sure because for the longest time I was convinced that I had ALS. A diagnosis of MS is a much better diagnosis than ALS. I am so glad you replied and you've been an excellent help to me. Look forward to your reply
Looked at test results again ,the oligoclonal bands test states this". Oligoclonal bands are present in CSF but not in serum. Consistent with Intrathercal synthesis of IgG". So what does that mean? The free kappa chains valve is for me 3.4 and the range for that is<0.7. Another test that might be helpful is as follows CSF albumin,serum. IgG/albumin ratio Mine was0.17 range is 0.06-0.17. CNS I gG synthesis Mine is 2.8 range is 0-3.0 IgG index. Mine is 0.60 range is 0-0.61. Does that give any light to the subject?
I am also in the diagnosis stage with oligoclonal bands found, so I am still learning myself. But I thought the differential diagnosis my neurologist sent me on oligoclonal bands would be of interest to you, and possibly some relief if you are worried about ALS. You will notice that ALS is not on that list.
Information about oligoclonal bands:
The differential diagnosis for the presence of OCBs unique to the CSF includes Sjogren syndrome (present in 75%-90% of patients with neurological symptoms), neurosarcoidosis (40%-70%), systemic lupus erythematosus (30%-50%), Behcet disease (20%-50%), paraneoplastic disorders (5%-25%), antiglutamic acid decarboxylase antibody syndromes (40%-70%), Vogt-Koyanagi-Harada syndrome (30%-60%), Hashimoto’s steroid-responsive encephalopathy (25%-35%), subacute sclerosing panencephalitis (100%), rubella encephalitis (100%), neurosyphilis (90%-95%), neuroborreliosis (80%-90%), human immunodeficiency virus infection (60%-80%), meningitis (5%-50%), adrenoleukodystrophy (100%), ataxia telangiectasia (50%-60%), Leber hereditary optic atrophy (5%-15%), CNS vascular disorders (5%-25%), and CNS masses and structural lesions (<5%).
" Oligoclonal bands are present in CSF but not in serum. "
This language, or similar, is what can be referred to as a positive o-band test relative to MS. It means that oligoclonal bands were found int the cerebral spinal fluid but not in the blood (serum) sample taken at the same time as the LP.
In order to make the comparison, it is important that the blood and spinal fluid be drawn at the same time. If "earlier" means earlier that day it's fine. If it means earlier that month, maybe not so much. It seems unlikely that blood drawn on a different day would be tested for the presence of o-bands. If it were, I'm not sure if comparison to later CSF would be valid.
There is no single test for MS. The diagnosis should be clinical and supported by MRI, LP, rule out blood work, nerve conduction studies, evoked potential tests, some of the above, all of the above...
Most neuros assume 'not MS' and look to tests for supporting lack of evidence. "Your MRI/LP/EVP was negative so you can't possibly have MS. Smart neuros assume nothing and look for clinical signs For direction and further tests to inform them.
Thanks for replying. It was very helpful. Got my MRI results today. Everything is fine, no lesions. Great news! Now how does that fit into the diagnois? Does it mean I don't have MS? Does it mean I'm still in limbo as far as diagnois? Being without a diagnosis is like trying to find your glasses because you can't see! So frustrating. I want to blame my symptoms on something!
That was so helpful especially the part of "ALS". Isn't on that list! So there several other things to imagine that I've potentially got? I just want to know for sure so I can get on with treatment and live a life somewhat normal. So what's your symptoms and story?