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Multiple Sclerosis Community
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11119474 tn?1428705770

Diagnosis Limbo

Hello everyone.
I just found this group while searching for information on the use of Solu-medrol for which I have been scheduled for a three-day treatment beginning Monday by my neurologist.  After doing a good bit of reading, I think I have a pretty good idea of the possible benefits and side effects, so my questions are not related the that specifically.

My frustration comes from the massive amounts of testing and the time it takes to determine the cause of my symptoms, the most disturbing being the numbness that I have in my body from hip level downward.  It started over a year ago with numbness in my big toes, then my feet, then calves, and now to the point where it's definitely uncomfortable all of the time up to and including my pelvic and rectal regions, eually on both sides.  :(   My gait and balance are definitely off... I fell in the store a couple of days ago when bending down to look at a product on the bottom shelf, and I have great difficulty walking and my family physician labelled that "claudication".

Over the past year I have had 7 MRI's including brain, cervical, thoracic, and lumbar spines. Lesions found in my brain and cervical region. The brain's were non-reactive, but the cervical were. I have been tested for all sorts of heavy metal poisoning, Lyme Disease, and have had EMG's all negative. My neurologist was leaning toward a diagnosis of MS until the Lumbar Puncture ruled that and any masses (tumor) out.  But yet, she has referred me to Vanderbilt University Hospital's MS Clinic for evaluation, but that appointment can't be had until February.  In the meantime, she has ordered the Solu-medrol to begin Monday, to see if that gives me any relief.

A little about my medical history that isn't all that pretty. I am 57 year old woman with a history of osteoarthritis in the spine.  In 1997, I had surgery called a spinal laminectomy on vertebra C-3 thru C-7 to relieve pain and disability due to spinal stenosis. It was successful, but I have suffered a lifetime of pain and dysfunction in my neck, but not nearly as bad before the surgery. The MRI's showed a compression fracture at T-3 that I've probably had for years, and it is always painful.  I have a bulging disc in my sacrum that causes intermittent nerve pain on the right side and down my leg. I have had rectal cancer in 2011 with surgery, chemotherapy, and radiation "down there".  I have been cancer-free for almost 3 years. I have been to a vascular surgeon this past week, who tends to think that the lower body dis-comfort is more likely due to radiation injury to the nerves around the rectum and pelvis, but because he's been asked to completely rule out a vascular issue, he has scheduled me for arterial ultrasounds.  The earliest they can do that is on Dec. 5th which is a full month away.

So, as you can see, I'm a mess and very uncomfortable.  I've been trying to get help for this for months and it's greatly frustrating that it is taking so long. I certainly do not WANT a diagnosis of MS, but what I do want is a diagnosis of "something" and a course of treatment for improvement, or at best, to not have symptoms get any worse than they are. I'm wondering if an MS diagnosis can be missed on Lumbar Puncture?  Also, does it always take this long and barrage of tests to get answers?  Also, in light of my symptoms, is solu-medrol likely to be helpful without a definitive diagnosis?

Thanking you all for any help.
~Linda

17 Responses
Avatar universal
Welcome to our group.

Lots I could say, but will limit it to this for now: Your neuro's major premise is wrong. Lumbar puncture cannot rule MS in or out. If it is positive in terms of MS indicators, that lends weight to a diagnosis. If negative, that proves nothing one way or the other. Quite a few who are eventually diagnosed with MS have negative LPs, especially if it's early in the disease course.

It'd be great if there were a single lab test for MS, but that's just not true. So I'm glad you're being referred to an MS clinic, where the doctors are much more likely to know what they're doing.

I don't at all know that you have MS, especially with your complicated history, so I don't want to come across that way. Just want to set the record straight. I don't know what you mean by reactive vs. non-reactive lesions, since these are not common MS terms. But if your problems at the moment are due to inflammation, IV steroids should help. They are not likely to hurt, though for some the side effects are unpleasant.

The journey to diagnosis is often very long and very frustrating, so hang in there.

ess
5112396 tn?1378021583
I second ess.
11119474 tn?1428705770
Thanks so much.  I guess I don't have this terminology down as of yet... I guess I meant to say that the lesions in the cervical MRI enhanced with contrast.  Does that make more sense?  Okay - I was under-informed then, or mis-interpreted what my neurologist said. I was under the impression that the Lumbar Puncture would give a definitive result one way or the other.  :(

987762 tn?1331031553
COMMUNITY LEADER
Hi and another welcome from me...

Yes that does makes sense, and it's actually very common for people (sometimes even neurologists) to believe a negative LP rules out MS, diagnosing MS would definitely be less complicated if the LP was a definitive test (:o)

People can definitely still have MS even if the brain lesions did not enhance, the location of the lesions are more valid than whether they enhanced or not! Enhanced basically means the lesions are 'new or still active' when the MRI was done but the window to catch active lesions is only between 30-40 days.

MS is one of the common causes of cervical cord lesions but it's not the only cause and with your rectal cancer, structural spinal damage, spinal surgery, and spinal osteoarthritis history (hugs) i would think there 'could be' a potential explanation somewhere in there and your spinal surgeon and cancer specialists i hope have been consulted for there opinions......

MS would still have to be high on your list of possible causes because you have both brain and spinal cord lesions, but because of your extensive and complicated medical history, the brain lesion maybe related to what you've gone through already eg ischemic vascular lesions. I think it might be an idea though, to check exactly what the brain MRI's reports say....their location, any changes noted, new lesions, new location, size, shape etc looking for anything that changed from the original through to the last one you've had, to see if there has been any notable changes.

I do think its a very good idea that you have a second opinion scheduled with an MS specialising neuro clinic, your history is going to make working things out more difficult than it already is, so you are better off with someone who has a lot of MS diagnostic experience and be confident in the outcome.....

Cheers.........JJ  

  
11119474 tn?1428705770
Thank you so much,  I can give you the findings from the cervical and brain MRI's.
Cervical:
Impression: 1. Two foci of abnormal signal and enhancement with the cervical cord at C4 and C5.  There is quesionably some mild expansion of the cord at the C5 level and mild cord edema versus myelomalacia change.  Conceivably the findings could be on the basis of prior surgery, but the enhancement would not be expected given remote surgical history in 1997.  Differential considerations to include multiple sclerosis with enhancing active plaques, an atypical appearance of spinal cord neoplasm such as astrocytoma or less likely metastatic disease.  
Recommend MRI of the brain without and with contrast. 2. Multilevel degenerative disc disease and uncovertebral spurring throughout the cervical spine resulting in foraminal stenosis bilaterally, greatest at C5-6 on the right, correlate for clinical signs of impingement.  3. Postsurgical changes with resection of the posterior elements from C3-C7.

Brain:
Findings: The venricles are normal in size shape and position.  The diffusion-weighted images show no recent infarcts.  FLAIR sequences and T2-weighted sequences show a few scattered focal areas of increased signal involving the periventricular white matter.  For example, there is a 5 mm lesion within the right frontal on image #15 series 6. There are additional bilateral lesions but none of these lesions enhance with contrast.  Apparently, there were two focal areas of enhancement within the cervical cord on the MRI of the cervical spine dated 08/04/2014. There were no extracerebral fluid collections and no mass or mass effect.
Impression:  1. There are a few scattered focal areas of increased sginal within the periventricular white matter which are nonspecific but would support the diagnosis of multiple sclerosis.  However, there was no contrast enhancement.  No evidence of a mass.  The remainder of the study was within normal limits.

And just a week ago, MRI was repeated on the cervical and thoracic spine, and I was told there were no changes from the previous studies, but I do not have the written reports yet.

There you have it.  Thanks for all the help you all are giving me.  :)

~Linda
11119474 tn?1428705770
"right frontal lobe"
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