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Conditions and Diseases > Multiple Sclerosis Forum > Is It Multiple Sclerosis? w/o lesions or spinal tap indicators ?
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Q: Is It Multiple Sclerosis? w/o lesions or spinal tap indicators ?
asked by: mollie doodle on November 21st, 2007
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I was diagnosed 5 years ago with MS. I have had multiple bouts of optic neuritis. My physician says that I have 7 of the 9 indicators. I do not have brain lesions & nothing showed up in the spinal tap that was just recently done.
My neuro-ophthalmologist still believes that I have MS. Is it possible to have a form of MS without lesions or anything showing up in the spinal tap? I am stimied. Please help me.
Mollie Doodle
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jutzee
replied on January 29th, 2008
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Diagnosed with ms in 1972
Hi Mollie,
After being diagnosed with MS for all these years, and having all the classic symptoms, now I'm having to go through more testings, because no lesions showed up on the open mri that was taken recently.
Did you get answers to your questions about the lesions?
I'm new in here, but not new to ms.

miles of smiles......jutzee
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mollie doodle
replied on January 29th, 2008
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jutzee
Yours is the first response that I have had. I wish someone would answer both of us! Is there a Doctor in the House?
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mollie doodle
replied on January 29th, 2008
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Doctor help us Please.
Bumping this up for answers.
Mollie Doodle
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jutzee
replied on January 29th, 2008
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No Lesions!
Hi Mollie;
Thanks for your reply. Here's something interesting that I have read about some others like you and me. After being on Copaxone for about 6 years, I have improved so much. I have also come across others who have had MS for years, and been on Copaxone, and their lesions are also gone. Now their neuro is saying the same thing as mine....We don't have MS. I think that's so strange after all these years. MS doesn't just disappear. Anyways...we all feel so lost now.

miles of smiles....jutzee
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mollie doodle
replied on January 31st, 2008
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No Lesions Either!
jutzee,
I have been an asthmatic all my life and have taken so much prednisone that my doctor says that could be the reason for no lesions. I sure would like a second opinion.
Smiling today, Smile
Mollie
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EncoreKennel
replied on March 2nd, 2008
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MS without Lesions
Hi All

I am in the same situation. I was diagnosed with MS in 1995 and have had all the indications but no lesions on MRI. Recently I began having severe pain in my R hip and after 7 months of doctor visits no solutions. A new MRI still shows no lesions and now Social Security has decided I am no longer disabled because I do not have MS.

I am not able to work, but with the new doctor stating no lesions equals no MS, now I no longer am eligible for my SS either. I have no peripheral vision, severe weakness, fatigue, memory lapses, and am in a lot of pain. I also have decreased reflexes in some areas and hyper reflexes in others.

I just wish someone would let me know what it is, if it is not MS, that is the disturbing part. Please let me know how you all fair with your situtation and best of luck.
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mollie doodle
replied on March 3rd, 2008
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Welcome to my world.
I have been hoping that one of the on-line Doctors would answer our questions. So far, none has. I just wanted to tell you that I understand how this affects you. It is so disheartening to go from Doctor to Doctor and still not have the answers. Stay in touch. Maybe someone will see our posts and help us to find an answer. My best to you.
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tmthack3
replied on May 10th, 2008
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Im with ya!
My Mri showed several lesions and I have a boat load of symptoms, yet my doctor still will not officially dx me and start me on treatment. I've heard the sooner the better and now hearing this, I really want treatment. What do I gotta do, beg?
This disease is so strange. Anyway, best wishes to you all. Yes, I'm with Ya!
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arealluckywoman
replied on July 15th, 2009
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MS Diagnosis?
I was diagnosed with MS and treated with Copaxone for 4.5 years. But then in 2006 I was told that I do not have MS but that I had multiple strokes and that is the reason for the lesions in the brain. After I stopped the Copaxone almost 3 years ago, the symptoms have returned. I have numbness on the right side, pain that wakes me up at night and headaches upon wakening. I am seriously allergic to some of the foods I love, especially if it has red dye in it. I have had just about every test in the book, lyme disease, thryoid, diabetes, with no definitive answers, but the pain continues. I am going to a doctor on 8/7 to insist on a diagnosis. I have something, and it is scary not knowing what it is!!
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louisaje
replied on August 10th, 2009
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My best friend has MS & she has lesions, I have done a lot of reading on the subject for the last couple of months. I've read there are many people who when being autopsied or having MRIs for other things are found to have lesions, but they dont have MS or any symptoms. Many people dont believe that MS is caused by lesions at all (me included).
Research natural remedies - many people have stories of their symptoms being cured completely with a change in diet (paleolithic diet low in saturated fat). Or chiropractic treatments (best to find someone who has dealt with MS before). There are many options out there. Im not into pharmaceuticles - be careful of them.
Good luck
xo Lulu
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jdub1a
replied on August 11th, 2009
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I am a physician and a patient. I have had various eye symptoms, muscle and nerve symptoms for years. Now the right leg weakness and abnormal reflexes are worsening. Initially, the only finding was non-specific white matter changes on MRI. Initially the evoked potential tests were negative. Now they are abnormal although "non-specific." I too will probably have to have more tests although I probably have the primary progressive MS which is not treatable by convential drugs anyway. My point is that it is a very strange disease. Like many syndromes which contain various symptoms, MS is probably many different diseases all classified as one. It is not unusual for some symptoms to show up before others. It is a very strange disease.
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