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LP RESULTS--NO O-BANDS ,but


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Old 03-10-2006, 05:25 PM   #1
duttin
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LP RESULTS--NO O-BANDS ,but

After 6 weeks of waiting for lumbar puncture results I finally called Neuro's office and talked to his assistant ,she faxed me the results after I promised her I would not tell him where I got them from.He had the file marked HOLD.To make a long story short the results state no oligoclonal IgG Bands detected.But,Myelin Basic Protein,ELISA---High elevated level.Report states elevated levels of MBP are seen in active demyelinating states consistant with MS,also seen with accute exacerbation in MS.

I wonder now with this test and the Lesion on the MRI will get my neurologist on the move.I'm releived now.I knew what I was feeling was real.

All the DRs I have seen which have been numerous stated that my symptoms were not correlating with MS.
Symptoms:
numbness and tingling--legs and hands
muscle cramps--legs and arms
muscle vibrations--felt like cell phone vibtrating thru body
facial numbness
heat intolerant--put hands or feet in hot water they go numb
fatigue--afternoon,hit me instantly
loss of balance
visual distortion or loss,some pain
occasional headaches
bladder oops
constipation
sexual disturbance--not hubbys favorite
mood swings---caused by pain and Drs not listening
stress---with all above who wouldn't be stressed

This has been a very long road,which seems to go on forever with out a ending.

After 4 neurologist and the belief of a Neuromuscular Doctor,I finally have a peice of mind.I am very much looking forward to my appointment with her on Tuesday.I'll be having a EMG/NCS and a MRI.

I may never get my local Neurologist to say MS,but the previous MRI and the Lumbar Puncture report states it all.Tonight I will have the best sleep I've had since this nightmare began.

keep listening to your bodies,you know how you feel.

Thanks to everyone on these boards,everyones stories gave me the courage to continue seeking Drs. and testing.Some of you know the heck I went thru with the LP,I'm still not recovered from that,still have difficulty walking,but very well worth it.

Bless you all

Toni

 
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Old 03-11-2006, 05:02 AM   #2
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Re: LP RESULTS--NO O-BANDS ,but

Nuffs, I am glad to hear you will finally be getting some answers! No one wants to hear the diagnosis of MS... but not hearing anything and being dismissed as "crazy" is much worse! So hopefully now you can start getting some treatment and things will start looking up! Good luck to you

 
Old 03-11-2006, 04:57 PM   #3
duttin
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Re: LP RESULTS--NO O-BANDS ,but

Curious11,

I finally can say I am not crazy!I'd like to send the lumbar puncture results to the first 3 neurologist and tell them I'm not crazy.I just hope these neurologist don't get this,and if they do I hope they get better DRs than what they were to me.

Toni

 
Old 03-11-2006, 05:26 PM   #4
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Re: LP RESULTS--NO O-BANDS ,but

I'm glad that you have (finally) found some peace.

Your symptoms are so consistent with what I have as well... I don't have a dx. So far my tests (the EMG, NCS, CT, and EEG) were all negative. I had an MRI on Thursday and am waiting for the results. (By the way, my Dr. DID order contrast- w/ and w/out. I thought that he didn't). I asked the Radiology and imaging place to send me a copy of the results as well as send them to the Dr. They acted like that was no problem. GREAT, because I don't want to wait another two weeks (like it matters at this point). I expect them to be negative, but we'll see...

Let us know how your appointment goes!

~Angela

 
Old 03-12-2006, 08:34 AM   #5
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Re: LP RESULTS--NO O-BANDS ,but

Nuffs... I'm glad i'm not the only one who feels that way. I have wanted to take my original MRIs back to my 1st neuro and say "Hey, take a look at these. Are you SURE there are NO lesions?" Cause had he taken the time to look at the films, rather than accept the opinion of the radiologist's report... I would have surely prevented some of my disability!

 
Old 03-14-2006, 03:38 AM   #6
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Re: LP RESULTS--NO O-BANDS ,but

Toni, I'm so glad you are finally getting somewhere. By the way, my neuro ordered some "extra" tests on my spinal fluid. Don't know what they were, but she initially said it did not look like MS but after ALL the results were back (I think it took about 3 weeks) I had 2 of 3 indicators of MS in the spinal fluid.

 
Old 03-14-2006, 04:40 AM   #7
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Re: LP RESULTS--NO O-BANDS ,but

Lilc,

When I received the lumbar puncture results,my general neurologist wrote on the report that the basic myelin protein being high has no correlation with MS.The printed info report fron the mayo clinic stated active states of demyelination with MS,acute exacerbation of ms is indicated,the moderatly high levels of mbp is significate with chronic ms.I called my neuromuscular specialist out of the cleveland clinic ,she told me not to pay any attention to the general neuro,apparently ms is out of his league and this report explains the sensory problems I have been experiencing.
I am headed to the cleveland clinic this morning, a 3 hour drive,they are going to do a deep muscle EMG/NCS to rule out the possibility of myopathy,I do have lumbar and thoracic radiculopathy a form of neuropathy,just for precaution measures.She has sent all my MRI's ,blood work and lp results to the ms clinic to get their valid opinion.I'm also having a MRI of the brain,some high tec machine that shows everything.Past and present.I'll be there about 6 hours,hopefully it will be another well worth trip.
I hope your result show something,many neuro's don't like to state MS with using the basic myelin protein as this is still on a trial basis.iIknow the clinic does,but they are a very advanced facility and their research is wonderful.
The one main point of the lp I'm not crazy,I havn't completly lost it,what I'm feeling is there.After many neuro's and other specialist,I was beginning to think maybe I'm not feeling this.I think after the lumbar puncture and my hubby got all honked of at the neurologist,it finally got the ball rolling.I'm still concerned why this neuro didn't want me to have the results.The Doc out of cleveland had to threaten him to get the results.And he referred me to the clinic.
I know I have to see a shrink from the clinic,routine proceedure.I guess to see where a persons psyc level is at.The first question is are you angry.There isn't enough time in the day to state how angry I am with the neuro's I've seen and the lack of the ability to hear what a patient has to say.And how dare they put there patients on an emotional rollercoaster and dismiss there symptoms.Anger is an understatement.
Today is going to be a possitive day,long but possitive.Most of all I havn't imagined all this,this is real and thats the main thing .
Lilc have a good day,I'm off to my appointment
prayers to you

Toni

 
Old 03-14-2006, 07:39 AM   #8
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Re: LP RESULTS--NO O-BANDS ,but

HI,
I just got out of the hospital, have had two ministrokes, have immune problems, and now they think I probably have MS. WE know our bodies better than anyone else!!! Does anyone else suffer ULTIMATE EXTREME FATIGUE???????????????
This is a great support system!!! I know Something is majorly wrong

 
Old 03-14-2006, 03:07 PM   #9
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Re: LP RESULTS--NO O-BANDS ,but

Toni, I hope the trip today was productive! I had forgotten how bad the LP was for you in the first place, I'm so glad it didn't end up being a waste.
Next time I see my neuro I'll ask what "2" were positive. I'm pretty sure she said I didn't have elevated oligoclonal bands, so BMP must have been positive. In any event, I'm grateful that she kept digging!
Hope you got GOOD FEEDBACK today. Anxious to hear.

 
Old 03-14-2006, 05:53 PM   #10
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Re: LP RESULTS--NO O-BANDS ,but (question to all and curious11)

My MRIs (brain and Cspine) were both negative (no lesions), negative EMG, opthalmologist exam normal (have had blurred vision in R eye for 2 months now). I am now seeing a rheumatologist, testing for arthritis, hepatitis, lyme disease, lupus, and various viruses that could have made me this way.

Curious11, are you saying your neuro didn't look at your films and just told you they were normal when they werent?? maybe i do have lesions afterall?? Please take a look at my symptoms:

Blurred vision R eye (january to present)
Abdominal pain after eating (january to present)
Dull pain in back of neck (feb to present)
tingling/vibration feeling in left hand (feb to present)
tingling in ankles (feb)
protruding swollen feeling by "adam's apple" (feb to present)
chest pains/heart palpatations (feb to present)
tight achy joints and muscles (march to present)
slight overall fatigue..generally feeling off, not as strong as usual, get more tired after a workout (this could be due to the fact that i have been stressed eating everything in sight, not working out gained 6 pounds in one month--usually at the gym everyday)

What do you guys think? I haven't gotten a lumbur puncture or anything but i do have copies of both mris... i should go to another nuerologist for a second opinion and bring the films right?

Thanks,
Michelle

 
Old 03-15-2006, 04:35 AM   #11
duttin
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Re: LP RESULTS--NO O-BANDS ,but

Lilc,

The appt. wasn't as productive as I hoped for,but there is no evidence of neuropathy or myopathy.I will never have a deep muscle EMG done again.I'm still in pain today.All blood work is normal.This neuro stated her hands are tied under medical criteria's that they can not confirm MS thru the basic myelin protien.She's 99.9% positive it is MS.For my Doc's here she classified the muscle twitching,vibrations and spasms to benign fasciculation syndrome and stated unsure the cause of sensory symptoms.This had confused me at first,it's do to insurance reasons.She wants me to schedule another MRI,have another LP in 6weeks(I don't think so) and to go to the pain clinic.IN all honesty I'm ready to take a break from the testing.I have had so many test in the last year,it gets mentually exhausting.
Dwallech-I get fatigued,it has subsided some what.I have learned limitations.
Burnt Bees-You have a lot going on.MS can be tricky to diagnose.My first 2 neurologist did not read my mri's only the reports.

Prayers to all
Toni

 
Old 03-15-2006, 03:49 PM   #12
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Re: LP RESULTS--NO O-BANDS ,but

Toni, I'm kinda glad my neuro is unavailable for a few months - she still wanted to do an EMG!
I'd imagine you feel like you finally got to the head of the line and they closed the ticket booth to go to lunch...At least it sounds like you got some empathy. Do take a break from the tests...
You've made me realize how incredibly fortunate I am to have "several" lesions! They are small, but the fact that there are 10 or 12 combined with a slightly positive LP and one "attack" got me under the wire and on meds.
Will keep praying for you!

 
Old 03-16-2006, 02:29 AM   #13
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Re: LP RESULTS--NO O-BANDS ,but

Toni
What did your neuro say they need to confirm 100% MS, is it another lesion or something else?
Also now the neuro has said 99.9% sure MS, have you told people in general you have MS or just 'still waiting for diagnosis' - just curious.
Sooty

 
Old 03-16-2006, 08:14 AM   #14
duttin
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Re: LP RESULTS--NO O-BANDS ,but

Sooty,

They need at least one more lesion ,clinic record of another attack or positive o-bands.The high levels of basic myelin protein is still under study.yes,my family is all aware of MS and have went with me to several DR appointments,I have a great support system.2 of my sisters are nurses that helps,my mom takes it pretty hard.
Lilc,
I think half the DRs I've seen have been out to lunch or on a perminent vacation.I did call my local neurologist,who all in all is a good DR,MS is just out of his scope.I've had 2 episodes this week of blacking out after taking a bath.I need to learn to turn down the temp of the water.Then afterwards my eyes get all blurry.I've had a terrible time with heat this week.Waiting to hear back from him.I'm going to take a break and enjoy the spring and the Easter Candy!

Prayers to all

Toni

 
Old 03-16-2006, 08:58 AM   #15
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Re: LP RESULTS--NO O-BANDS ,but

Toni, can you describe what it feels like when you get out of the hot tub. I'm awaiting my appointment to see Nero doc with numerous symptoms, worse being the dizziness/vertigo feeling. When I get out of my hot tub I seemed to feel short of breath, faint like feeling, almost need to do the head between the knees thing to feel normal again. This only happens if I stay in the hot tub for an extented peroid of time.

 
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