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tfofd
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Date Joined Apr 2011
Total Posts : 56
   Posted 4/5/2011 9:46 AM (GMT -6)   
please delete

Post Edited (tfofd) : 6/10/2011 7:08:22 AM (GMT-6)


Gretchen1
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Date Joined Jan 2007
Total Posts : 3567
   Posted 4/5/2011 7:49 PM (GMT -6)   
High ANA is not typical for MS. If you are being sent to a rheumy then I would wait on the lumbar puncture. It is an invasive process and not without risk. It can be painful but for most people this is not typical.

Having MS without lesions is a bit of a controversy. Indeed MS is causing cellular damage that is beyond the imaging techniques of standard MRI machines. Saying that, MS is considered a disease of "scars" or "lesions" of brain or spinal tissue. Some people have symptoms before lesions show up, however most doctors won't give a diagnosis of MS until there are lesions along with several other tests. You can have lesions and not get a diagnosis. An MS diagnosis is a disease of exclusion. All other reasons must be ruled out.

For most people to get a diagnosis of MS they have: an MRI with at least 2 or more lesions, a lumbar puncture with 0-bands, failed or abnormal evoked potentials test, and a thorough neuro exam with abnormal reflexes and reponses typical of MS damage.

http://www.mult-sclerosis.org/diagnosingms.html

This is an excellent website that discusses the diagnositic process of MS. Best of luck to you. I hope you find relief soon.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3567
   Posted 4/5/2011 10:26 PM (GMT -6)   
The link I posted explains the diagnostic process. It sounds like you want what is called an evoked potentials test. Google that for more info.

I am not sure about MS always showing abnormal reflexes. Mine did from the very first exam. There are several neurological reflex tests they do. I had abnormal responses to several of those tests.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3567
   Posted 4/6/2011 6:25 PM (GMT -6)   
Losing time (the bathroom incident) is not at all normal.........not even for MS.  I would have a neuropsych evaluation right away if I was you.  Also, I would stop driving.  You are either going to kill yourself or some innocent driver or pedestrian.  If any of your doctors were to hear this description, they would be forced to report this to the DMV and your driving health would be up for evaluation. 
 
I know you are young, but have you considered Alzheimers?  Your cognitive issues are extreme, serious and dangerous.  This is not nothing!  You need to aggressively seek out answers.  You need to be clear in your descriptions.  Why haven't you told your neurologist half of this stuff? 

fish29
Regular Member


Date Joined Apr 2011
Total Posts : 70
   Posted 4/7/2011 2:26 PM (GMT -6)   
Interesting, I have something VERY similar.
Have you looked at where your spinal cord ends? I ask because I was diagnosed with tethered spinal cord syndrome last year. Urinary problems, nerve damage, pain are all part of that. Interestingly enough I have now developed what they think is myofascial pain.

I was just tested for MS, but no lesions.

fish29
Regular Member


Date Joined Apr 2011
Total Posts : 70
   Posted 4/8/2011 9:19 AM (GMT -6)   
Why have they not done an MRI of the lower back?
Just a word, I know personally we were so convinced I had MS that my doctor and I went over possible treatments (he is world renowned neurologist). I lost function in my hands, my eyes hurt, I had vertigo, my arms would tingle (nothing to do w/ lower cord), I had memory loss, muscle weakness...
We came back clear, and he tested for other autoimmune- all clear. I decreased my Neurontin (for nerve pain) and started doing massage/trigger work. My arms got better etc.

Now with Tethered Cord, it's a congenital disorder. I had bladder problems for a long time before I had back problems, and that is actually typical.
I hope you are not upset with me, just trying to help since I went through all this stuff and I really think you should have a lumbar MRI to rule out other things.
My doctor things I developed Fibro and myofascial because of extreme stress.

fish29
Regular Member


Date Joined Apr 2011
Total Posts : 70
   Posted 4/8/2011 2:50 PM (GMT -6)   
Oh sorry, I didn't get the full scope. It just sounded so similar for a second there.

I hear you on the doctors. I saw 30+ before they finally looked at my MRI, and that guy explained the condition wrong to me and wanted to do a procedure that could paralyze me and would never help!

I do understand the invisible disease, I have started to get horrible pain in my muscles, as if I have lava going through my whole body and still people shrug it off.

Maybe you need a new doctor? Someone should do simple tests for you like do an MRI! That's unacceptable, but like I said, I know that whole war.
I hope you find something better and they figure this out. Do you have to get a referral because of your insurance? If not do some searching and tell them you are having some serious pain issues and you need to see someone (pain clinic), sometimes they will see you. Try asking for the nurse, not the person in the front. The neuro usually does require a referral, but not always. Tell them you are having these symptoms and you don't really have a PCP. Get your foot through the door.
I have e-mailed doctors in the past! Actually that's how I found my neurosurgeon. I ended up getting in ASAP vs. having to wait 3 months because he liked me and knew who I was (through e-mails). You can look on their websites and most have e-mails for contact.

Worst case scenario, make it known to your physician that you need all copies of your medical records because you need to find a new doctor! Remember you are paying him!

fitgal
Regular Member


Date Joined Mar 2011
Total Posts : 157
   Posted 4/9/2011 3:13 PM (GMT -6)   
I just had an MRI and they found "several indeterminate periventricular lesions," and also a herniated disc at c5-c6. Now, what are the chances that the lesions are NOT MS? I don't see the new neurologist until the 26th. Then they will schedule the MS workup and lumbar puncture.

For a tiny bit of background, my PCP sent me to the neuro after seeing him for facial pain, believed to be trigeminal neuralgia. The MRI says "no evidence for trigeminal pathology."

I searched online to see what else the lesions could mean and it said the vast majority of periventricular leasions are due to MS. Any ideas on what ELSE could be the cause?
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