Oligoclonal Bands in CSF and Serum, with my history

[cherubi]

Hello, I am new here and without diagnosis for the last 2.5 years, I'm only 36.

Bilaterally, I have muscle weakness in legs, arms, and I believe hips too.Over time, I have developed chronic pain in my feet, knees, and hips, and being on my feet makes it worse.  I have muscle twitching/fasciculation, from the onset 2.5 years ago. I feel tightness in my muscles, especially calves/achilles tendon, like a pulling, squeezing sensation that never goes away. My fingers, toes, arm, hands, shoulder, sometimes jerk out of nowhere, and this usually happens when I try to relax in bed. There was a period when this was happening so much, I couldn't sleep.  I have these crawly irritating sensations in my legs when I try to sleep, like what they call restless legs (this became really bad several months before things came to be what they are now).  I have these strange low vibrations going through my body when at rest, and other times when I put pressure on my feet, these vibrations/internal shakiness become strong. I feel this cold burn in my feet, especially the heels where my feet hurt the most. I feel off balance walking, and I feel unstable when moving about the sidewalk, and also feel this off balancde sensation in my eyes too. I have dry eyes, mouth, vagina, skin, swallowing issues, lisping certain words, neck and jaw tightness.

I've had 3 emg/ncv which didn't show anything so they say, which is concerning because I believe my symptoms scream NEUROPATHY or MYOPATHY of some sort.  At least one dr, an emg physiatrist, not a neuro, admitted that these studies will not catch all neuropathies/ myopathies.  I often wonder what their criteria is for abnormal, if I'm having all these problems and "normal" electrodiagnostic studies.

My bran mri showed many UBOS, I do not have headaches...Cervical mri showed nothing- both doen on tesla 1.5.

I  have only 3 abnormal tests: High C-reactive protein(9.0), dry eyes and mouth through stain and collection tests in sjogrens clinic, mild lymphocytic infiltrates in minor salivary glands(biopsy), and most recent:

Multiple restriction bands in both Csf and Serum, in which the origin cannot be determined whether coming from CSF or Serum.   Normal IgG index, protein,glucose, cell counts etc...

The neuro would not explain the results to me and that is why I am here. I have been forwarded to an MS Clinic and have to wait 3 months to get answers. It's torture what this neuro has done to me to add to my stress.

Please, can anyone provide me with insight about my specific pattern. It does not fit into the classical MS pattern, although I read that 10% patients can have it- if this is this mirror pattern?

Which other diseases could present this o-band pattern, what is the differential for this pattern???

I was so active before this, I can't imagine what happened to me :(
Thanks for reading,
Cherubi

[nana68]

I am in the same place as you I have 4 periventricular near the latereal horns and occiptial horns and 2 in the juxtacortical frontal lobe regions they are all 3 mm except the occipital which are 10 mm and one is irregular. I have 2 o bands matching in serum and spinal fluid..normal emgs nvcs, normal other blood tests except elevated ch150 total complement and high d dimer. I have most of the symptoms you have and more. I was told I have clinically isolated syndrome with atypical pyramidal dysfunction whatever that is...it could be a possiblity but the neuro did not understand that I have critical illness polyneuropathy and myopathy and was paralyzed before any symptoms happened due to status asthmaticus and ventilator induced fungal pnemonia which caused sepsis...so ms or something else I wish I knew.

[S. Kaul, MD]

Hey Cherubi!

Well, without a detailed clinical evaluation it would be difficult to determine the cause of your symptoms. Possibilities that may need to be considered include a few autoimmune conditions affecting the neuro-muscular symptoms, atypical MS, hormonal/ endocrine issues, micronutrient deficiencies, heavy metal poisoning, medication/ drug side effect, infections, inflammations, vascular issues etc. while a few patterns of neuropathies/ myopathies may present with normal EMG/ NCS, these would still form an unlikely diagnosis with normal tests. I would suggest considering a detailed evaluation by an internist initially and depending on the cause diagnosed/ suspected it can be managed accordingly or specialist (rheumatology/ neurology) may be sought.
Hope this is helpful.

Take care!