undiagnosed but suspicous

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larae
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 8/4/2008 2:10 AM (GMT -6)   
Hi everyone- I am a newbee. I had some questions for you all. I recently had a brain MRI that showed negative lesions but I am experiencing so many symptoms of MS. Is there anyone who has MS that was not diagnosed with a brain MRI but through a spinal tap, etc.? I have horribly heavy legs, weakness, fatigue, weak dorsiflexion bilaterally, feeling out of body, pain in hips and groins, etc. My doctor told me it was psycological... I am an avid runner and a physical therapist assistant...I know my body. I also have a positive ANA which he dismisses as well. I can't sit and wait for this to keep progressing without knowing what is going on? So, I hope anyone can offer any insight on how they were diagnosed and their symptoms. my legs feel like a sack of potatoes!
Thank you,

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 8/4/2008 9:11 AM (GMT -6)   

Hi and welcome to the board.  I am sorry you are feeling so badly.  We do have occassional members that are diagnosed without lesions but remember that "multiple sclerosis" does mean more than one scar.  The current criteria leaves it up the doctor - so a doctor can diagnose you without lesions but it is assumed that those lesions will then show up in the next two to three years.  If they don't, then it is highly recommended that the diagnostic proceedure starts over.

Certainly a lumbar puncture at this point is helpful.  It can indicate many things that mimic MS.  And you should be researching all the diseases that mimic MS.  Google "diseases that mimic MS" as a place to start.  You may also want to post your symptoms on our Lyme disease board because of the shared symptoms.  The pain in your hips and groin is not a typical one for MS, and most doctors don't look at ANA for MS. 

Good luck.  It appears you will be off for a second opinion.  I hope you find some answers real soon.  Please ask as many questions as you like and again, welcome to the board. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006


larae
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 8/4/2008 1:44 PM (GMT -6)   
Thank you for this bit of info. What would be the proper diagnose procedure for a doctor to do for MS? And, if I understand correctly, a positive ANA has nothing to do with MS? What are the tests I should ask for?
Thank you,
Barb

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 8/4/2008 4:52 PM (GMT -6)   
It is different for each person and the doctor they have.  The typical route for MS is a complete neuro exam - this would test reflexes, strength and balance, a brain MRI, some doctors like a cervical and thoracic MRI as well, a lumbar puncture, blood work, and evoked potentials.  Evoked potentials usually means vision, hearing and upper and or lower extremities.  The ANA could be used to look for other issues but it not typically used for MS.  

Gretchen       co-moderator MS board       diagnosed with MS July 2006


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 8/8/2008 8:53 PM (GMT -6)   
Yes, larae, I am one who has no lesions (that they've found yet) and no Obands via the LP... however, by all accounts thru a neuro exam and nerve conduction test and Optic Neuritis, my neuro has dx'd me with MS as of March this year. He calls it "benign".
 
The other thing he points out is that Standard MRI machines are 1.5 Tesla magnets, while some more specialized others are 3.0 Tesla magnets... and open MRI's are .5... this all makes a difference because some lesions won't show up every time on the standards.
 
Your neuro will know. It's a long arduous ordeal of monitoring and testing, reporting symptoms, keeping journals etc. All this leads the neuro to a conclusion when he gets enough info to confirm it to him. As Gretchen pointed out, it is "multiple" so if you have everything in just one area like all numbness or legs only etc... then that's only one area of issue, whereas, balance, numbness, and Optic Neuritis then makes it conclusively multiple. Be patient and keep a journal of your symptoms it'll be helpful to the drs.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 8/10/2008 7:33 PM (GMT -6)   
Hi Larea,
I just noticed your post tonight. I too am a PTA. You know your body more than anyone. You learned about it in school, this is what we do. Do not stop looking for an answer. Geesh, it was like reading my own post 2 years ago. I went to so many doctors i lost count. It seems as tho no one will listen to you complaints. One doctor diagnosed me with piriformis syndrome, another with muscle spasms, another with bursitis, and la la la. I was sitting in their office crying and rolling my eyes at them. I had balance issues and severe weakness in my left leg. Numbness and such brisk reflexes, my leg could probably kick a ball a mile when they would test my knee reflex. Come on, i knew something was wrong. My leg felt like it weighed a thousand pounds. All text book MS symptoms, but no one knew. I kept saying MS, but nope, no way, i was crazy and didn't know what i was talking about.. I walked like a typical neuro patient. Very frustrating. I am in PA. I do not practice but have a valid license. I work at a mobility manufacturer doing rehab mobility sales and support. Thank god for my job or i would be on disability right now. I can barely stand up myself and walk, can't imagine trying to hold someone else up, lol. If you have any questions for me, feel free to email me. Just click on my name and it will prompt my email.
Good Luck
Lynn
 
Dx MS December, 2006
Started Tysabri March, 2008
Baclofen/Zanaflex Combo,
Cymbalta and Provigil


inter456
New Member


Date Joined Aug 2008
Total Posts : 1
   Posted 8/18/2008 2:41 PM (GMT -6)   
In the beginning of 2000, I began having numbness in my left hand. I had a neck x-ray, and the doctor said he didn't see anything unusual. Thereafter, I started falling down at my desk at work. I also could not stand hot water showers. Hot water made my body weak. I had to take cold showers. I then went to a neurologist in October, and he did a spinal tap which came up a little high. He must have hit something because I had a drop foot. Then he did some tests, and said I had MS. I started taking prednisone and was gaining tons of weight. In December, I had an MRI with another neurologist and they found out that my C4/C5, C5/C6 had broken and was impinging on my spinal chord. I was almost in a wheelchair at that point. I went in for emergency surgery. The doctors didn't think I would ever walk again. But, IT WAS A MIRACLE....I walked. Took alot of rehab. Still have numbness and tingling in my arms. And my walking is still unsteady, but I was TOTALLY misdiagnosed. Please don't let this happen to you or anybody you know.

There is so much more to this story. This was a brief overview. Hope it helps.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 8/18/2008 6:16 PM (GMT -6)   
I am sorry to hear of your troubles.  I am glad to hear that you are feeling better.  This is a forum for support of those that have MS.  I have MS and I am sure of that diagnosis, but thanks anyway.

Gretchen       co-moderator MS board       diagnosed with MS July 2006


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 8/19/2008 7:48 PM (GMT -6)   
(clapping) Bravo Gretchen! 
 
Misdx's happen... but they're not encouraging when we know what we're dealing with and others are seeking.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

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