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dolphinlady
New Member


Date Joined Feb 2009
Total Posts : 7
   Posted 2/17/2009 7:13 PM (GMT -6)   
I had a spinal tap a little more than 2 years ago.  Could it be possible that the negative for MS could now be different or was incorrect at that time?  I went to a neurologist and was told that everything is presenting as MS, but he didn't schedule me for any tests.  I have recently moved from Centrla Illinois to Western Kentucky and the docs don't seem the greatest and everyone is telling me to go to Nashville!! 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 2/17/2009 8:39 PM (GMT -6)   
Hi dolphinlady,
 
Welcome to the board.  Your lumbar puncture from two years ago indicated that you didn't show signs of MS.  That was then, this is now.  You can certainly have different results if you were tested again.  Why do you suppose your neuro says that you are presenting as MS yet he did not order any tests?  Did he indicate a reason to you? 
 
I would certainly get a second or even third opinion.  It can be very difficult to get an MS diagnosis.  What symptoms do you have that lead you to believe that you could possibly have MS?  I hope you feel welcome here.  Please ask any questions you may have.
 
By the way, not everyone that has MS shows the oligoclonal bands for it.  Research indicates that 80 - 90 percent of those with MS show the o-bands in the csf.  That clearly means that there are 10 - 20 percent of those diagnosed that DON'T show those indicative bands. 
 
The site below should give you plenty of information on how a MS diagnosis is obtained these days. 
 
http://www.mult-sclerosis.org/diagnosingms.html
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


dolphinlady
New Member


Date Joined Feb 2009
Total Posts : 7
   Posted 2/19/2009 9:21 PM (GMT -6)   
In fall of 2006 I had an incident at a restaurant where I lost most of my sight in my right eye.  I originally thought it was just because of a glare off of a car bumber in the parking lot.  Went to the doctor who sent me to the opthamologist who finally did a field of vision test.  That showed black on the right side of my right eye.  I cannot see the peripheral on that eye.  Had MRI that showed 3 spots (lesions) on my brain.  Also had spinal tap (negative) and MRI of the spine (no more spots there).  Had a stereotactic brain biopsy on th spots that turned up inconclusive.  Gave up on docs for awhile.
 
Then about a week ago had more problems that scared me.  I had a "wrong" feeling and tingling in two of my fingers on my right hand.  Saw a doc here in KY who told me my BP was high (140/90) and sent me to a neurologist in Madisonville, KY.  Then I started getting more tingling feelings in both hands, face, mouth, lips, tongue, and chest.  Went to Madisonville neuro for a nerve test and was told that I was presenting like MS.  Today another thing surfaced.  Now my knees feel very weak and shaky and I felt like I was going to do a nosedive all day today.  I called the neuro and originally was told that it was due to migraine (receptionist came back and said that th tingling was due to migraine not the knees).  The neuro says that I have to see the opthamologist before he will do anything else, but symptoms seem to be getting worse and definitely scarier!!!  Any suggestions??
 
Thank you very much for any help you can give me.  I greatly appreciate it.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 2/20/2009 8:34 AM (GMT -6)   
Yes! You need to keep at this. Find a new neurologist and what you need is an MS specialist. Get copies of all your MRIs and the reports that go with them. Most radiology departments will put your MRIs on a CD for free. You need make a notebook with all your tests and records. Most of the time I would say not to mention MS to any doctors you see but it has already been brought up. If they tell it is not MS then ask them to explain exactly what is causing your symptoms and lesions.

I would also go to the drugstore and get your own blood pressure cuff. They sell for 60 to 100 dollars. It is pricey but worth it. If your blood pressure is up you are at risk for TIA or stroke and that also can cause "lesions". Take your blood pressure all through out the day and see if it is high. You want it averaging below 120/80. If your BP is up then get that treated so that is out of the way. There are many many meds for that that have few or no side effects. Once you have take care of that, then your BP can no longer be blamed for numbness.

We get many many people on here that don't impress me with their symptoms. I am certainly not a doctor, but your situation worries me. I think you have something to be concerned about and you need answers. Good luck.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


dolphinlady
New Member


Date Joined Feb 2009
Total Posts : 7
   Posted 2/20/2009 5:21 PM (GMT -6)   
One of the scariest things is that no one is giving me anything to treat any symptoms so I feel like crap all day long and have to suffer through it.  It is also getting worse and not better or staying the same or going away.  I'm afraid that if I wait much longer things will go to heck and I'll end up so bad that I can't walk or talk or anything!!!!!!!!!!!!!  This is extremely depressing.  I'm also the type of person who goes to work, gets things done and takes on a lot throughout the day.  Today my pain was gone but I felt extremely drained all day and my knees were stiff so I was still walking bad.  I work at a freezer plant that is a very good size.  Ended up walking to our dry storage area which is some distance from my office and felt terrible!!!!!  I can't have this affect my work!!!!  I am the breadwinner of a family of 5.  My boyfriend just recently got a job down here (luckily with my company), but I feel terrible asking him to take time off to take me places (doctors).  I don't want it to affect his job status.  It was because of me that we made the move from Central Illinois to Kentucky!!!!  Also, I just signed the sale papers for my house.  I'm scared to death that this is getting worse and the docs seem to be stuck.  Can't I just go somewhere and start fresh so the docs don't have a preconception of anytihng??  Sometimes I think that might be the best.  Oh well, suck it up and work harder will be my motto from now on.  thanks for listening to me rant and rave.  It has helped already.
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