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Posted 6/11/2006 3:39 AM (GMT 0)
Hello All! I'm not sure if you remember me but I posted here a while back.  I went through a series of test and the neurologist told me I did not have MS because my MRI and spinal came back OK.  Well, symptoms have returned and my PCP doc thinks that I might have MS afterall.  She said it could take years for the definite diagnosis or lesions to appear. 

I asked her about the spinal tap.  My question is if I'm not experiencing a flare up will MS show up on a spinal.  She said "probably not". 

I'm aggravated because when I was flared up real bad the doctors ho humed around until the flare passed.  They finally did the spinal after I felt better. 

Any feedback is appreciated.

Posted 6/11/2006 3:54 AM (GMT 0)
Welcome back! As far as I know the bands that show up in spinal fluid do not "come and go", they may take a while to show up or may not at all, but they don't disappear. If it's been 6mos. to a year since your last MRI then request to have another. I hope you get your answers soon!

Take care...keep us posted!
Posted 6/11/2006 10:32 AM (GMT 0)
The bands should show up in the spinal fluid whether you're having a flare or not. Sometimes lesions will show up more clearly on an MRI in the middle of a flare. If it's been awhile since you had the MRI, and now you're experiencing symptoms, it might be good to get another one, while your symptoms are present. It does indeed take awhile..sometimes years..for the signs to show up to indicate what is wrong.
Posted 6/11/2006 12:22 PM (GMT 0)
Thanks guys!  I'm at the beginning of this and don't know what is going on.  It does sound like a demylating (sP?) disease.  I was sitting in court the other day and I could feel the stings and movement all around my lips, nose and face.  Last night it was under my fingernails.  The thing that causes the most pain that comes and goes is a band about 6 inches in width right above my knees.  It aches like crazy, especially at night. 

I'm not in a flare up right now.  Everyday I have annoying coming and going of things like above.  In February, however, I almost lost functioning.  Dizziness, my walk was a shuffle, balance and pain that was unbearable.  My hands felt like they were going to buzz off my body.  The pins and needles under my fingernails were unbearable.  The bands above my knee would not let me get comfortable.  The stings in my cheeks felt like glass moving under my skin.  My ears would ring.  It was crazy. 

This forum helped me then and now I'm back.  Right now its mild but it makes me wonder what the years to come will bring.  I can't think about that rather just keep on working and doing and going. 

Thanks!

Posted 6/11/2006 4:19 PM (GMT 0)
Hi Seejo,

I'm sorry you are going through all of this again. We are more than happy to have to you back and I hope in time they can figure out what's up eyes Did your PCP say anything about investigating more into it? Any mention of a new MRI maybe since it's been a while?

Kimber
Posted 6/11/2006 7:09 PM (GMT 0)
I just had the MRI's in April so they are new.  She's saying that it's probably not showing up yet.

Posted 6/11/2006 8:25 PM (GMT 0)

  My problems started back in 1994, dizziness and lack of balance with terrible headaches.  It lasted pretty severly for about 3 years.  Then it went away, but not completely, I would have an occasional bad day here and there, but able to  deal with it.  I had MRI's which all came back normal, evoked response came back normal, even seen an ENT Dr. for inner ear testing, all came back normal.  Now, for the last 6-8 months, I have been having several problems again with my balance, heavy legs, and weakness in my legs.  Seeing a neuro again, MRI of brain and thoracic spine, normal, no lesions. I am now awaiting cervical spine MRI.  After all these years(12) and no lesions, has anyone ever heard of that with MS?  Although, I am still awaiting the Cervical MRI, at this point I have no lesions.  But, still have all the terrible symtpoms... I have posted here before, and like many of you, I still have no dx. and not one doctor able to tell me anything close to a dx. It sure makes it hard to not know what the hell is going on with your own body.  The neuro I am seeing now thinks it is not MS, since I have no lesions to show since 1994, no bowel/bladder problems and no visual problems. Of course that doesn't help, I still don't know.  Is there anyone out there that has been given a dx of MS, after many years of normal MRI and evoked potential tests?  

ShelleyLVN

Posted 6/12/2006 12:46 AM (GMT 0)
ShelleyLVN...as your neuro said .. after 12 years, with a normal MRI, it really isn't likely that it's MS. Have you seen a rheumatologist? There are several rheumatological disorders that can have symptoms such as you describe.
Posted 6/12/2006 1:49 AM (GMT 0)
My doc says that there are many neurological disorders out there they probably don't even know about yet to dx.  Probably many things similar to MS are lumped under MS but are actually something else not known.

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