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Oligoclonal Bands & Possible Fibro What does it mean?
4 Replies
PalesAngel - December 5

Hello everyone! I've been going to my neurologist for over a year now. He's actually been really good about everything and treating my symptoms as the have come about, he has given me meds for energy, sleep, pain meds, and 2 different meds for fibro, (one kinda worked but made me gain weight .. and more weight.. and more weight) and the other I don't think is working so well. After I showed him some pictures of my feet being BRIGHT RED and swollen at 8:30 am..... he said that concerned him very much and now he's referring me to a Rheumie.... and not really sure why. (I'm sure he knows me well enough because he is also our oldest's, who has MS, Neuro.)

Last year about this time I was still recovering from being a human pin cushion, or looking like a really bad drug addict that couldn't find a vein, lumbar puncture, and having 6 MRI's done.

My test results came back with nothing in the blood tests, nothing from the small fiber neuropathy skin tests......... And then the whammy.. they found 5 Oligoclonal bands in my CSF, and none in my blood serum that they took at the same time.

My best friend suggested that I take a look at the Fibro symptoms, and I would say almost all of the symptoms match what I have with the exception of the LP results with the 5 Oligoclonal bands vs none in my blood. I feel like I'm 90+ yrs old when I get up in the morning and have to give myself a right old pep talk just to get out of bed and move. I have to take medication to keep me from inplanting my key board to my forehead on a daily basis, (by the way the extraction is painful not to mention the red spots are quite unsightly). Sleep has not been my friend for a very very long time, my neuro finally gave me something for that because my Darling Hubs decided to tell on me to the neuro about the Fogginess, lack of sleep, constant pain in my hips, junk in my truck, down to my feet. (the pain USUALLY feels like some one took a really old rust razor blade and sliced my legs open then dropped me in to a vat of rubbing alcohol.)

I'm wondering if I could have Fibro in addition to something else causing the Oligoclonal bands.

I am just completely and totally at a loss any more... and now I don't know what the heck to do!!! I am just wondering if anyone else has the Oligoclonal bands or am I looking at something else in addition to the possible Fibro?

As long as you don't tell anyone ...we are all just friends here so who's going to know... but if I were completely honest, I am terrified and almost in tears on a daily basis because of the pain and my fears of having to live with the amount of pain I'm in on a daily basis.


Jocelyn - December 6


I believe your Dr. is sending you to a Rhuemy because you may have some sort of arthritis that needs to be looked at. I am not too good at this stuff, but I have not heaer of Oligoclonal banks when dealing with Fibro.

I hope your Rhuemy can help you out, my friend is going through a lot too, with pain. they found she has psuedo gout (not sure of spelling) it was found in fluid from her knee.


PalesAngel - December 6

Thanks, for the information!

My only hope is that it's not some sort of arthritis in addition to fibro. I have almost all of the symptoms and I have at least 14 of the "pressure points".


Nana64 - December 7

Hello friend
First let me tell you that I completely feel your pain as well understand all that you are going through. I was diagnosis with Fibromyalgia in 1995. during that time very little was known about this illness nor was there any regimented treatment plan for it. Finally in 2008 I was able to receive some help with this illness. I am seeing a neurologist for my illness too. I was also given Lyrica as one of the meds for my treatment. I gain a lot of weight from taking this med. & the reason it was prescribe because it was the only med prescribed as a treatment for fibromylgia. in April 2010 Savella was approved by the FDR Admin. and it works better for me.
also please understand that fibromyalgia has three different stages mild, moderate & severe. My stage is severe unfortunately. You shared with us about the swelling in your feet/legs & how you took a pic of your feet. I did the same thing & showed it to my physician. Your swelling is fluid building up in your body from your pain. I was given lasik to removed the fluid & they are back to normal. I too have more difficulty in the morning's. There are days when I am completely unable to get out of bed. Difficulty sleeping, fatigue, fibro-fog, lack of concentration, short-patience, a list of symptoms you will deal with. I found that meditation helps, keep a journal/diary of your condtion. Which you should note things such as temp, weight, blood pressure, your general well being & even the daily weather. Because the weather will trigger your symptoms. And the reason you are checking your weight. because if your weight changes by 2lbs in a day it's fluid. And try not sitting for any extended amount of time, if you can't avoid it, then always elevate. You are going to have to is work with your condition & not against nor give into it. I found that the Salonpas Pain Relieving Patches work well on my trigger areas. Remember only you truly know how well you feel, therfore you can control those external factors that may create additional pain. I hope that I was able to help you with this illness that we both share.


PalesAngel - December 7

Thank you for the information.

I kind of get the feeling that my neurologist is trying to get the Rhuemy to look at me because he's not sure what to think of everything I have going on. My neurologist has been wonderful, and has been treating me the best he can. Like I said before, he knows me because of our history with my son. To be honest I believe that he honestly cares about me and my entire family.

Do what defines the different stages? Because to be honest, mine seems to be getting worse rather than better even with the Savella. I've gotten to the point now that I'm having to take more than just an OTC to control the pain during the day. Until about 3 months ago I was able to get out of bed and get ready for the day with very seldom any help. Now, I have to either have my husband help me out of bed in the mornings, or when he's out of town I have to set my alarm 20 mins before I need to be in the shower just to be able to get from bed to the bathroom, and in to the shower.

I can't really avoid sitting for long amounts of time. We live 30 minutes from my work, and I have a desk job. Granted, I try to make sure that I get up and walk to the printer on the other side of the building several times a day just to help with moving.

I've tried the Salonpas Pain Patches, and they did little to help me. So I talked to my neurologist about them and he gave me lidocaine patches. They work wonders for me on my trigger points especially at night. They also help for the interim when I'm having a particularly stubborn day and trying to "muscle threw" my pain and not take any pain meds. And that usually back fires because I will end up in more pain by the end of the day.

Thanks again everything you said is immensely helpful.



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