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11119474 tn?1428702170

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
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Avatar universal
I have no "O" bands either, but have RRMS and it took many years and many neuro's  before I found one who knew what he was doing.  Hang in there!
Helpful - 0
1831849 tn?1383228392
immie -

O-bands in the CSF but not in the serum are an indication of inflammation in the CNS :-)

Kyle
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551343 tn?1506830518
thanks hun for taking the time to answer my query.
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5112396 tn?1378017983
If your CSF and blood serum showed the same number of oligoclonal bands, then the test is of no diagnostic benefit for Multiple Sclerosis. It will not push a neurologist closer. However, it absolutely does NOT rule MS out.

Lumbar punctures are more of a 'full picture' test, but not a gold standard. Many neurologists forgo them all together. I'm not sure what you mean by 'showed inflammation' as the only thing they're really looking for when MS is on the table are oligoclonal bands. Perhaps it was simply the term they chose to use.

In terms of the MS diagnostic rodeo, your LP was negative. But that doesn't mean you don't have MS.
Helpful - 0
551343 tn?1506830518
Hi essdipity

One of the reasons i didnt get an MS diagnosis was my LP.

I did have O Bands show up on the LP, BUT I had a blood test at the time alongside the LP and it showed inflammation. This is what my neuro told me, with the inflammation in the blood showing it is negative for MS.....

I asked him at the time, could the inflammation in the blood be caused through something else a red herring and he said yes, but still couldnt use the LP as the final bit of puzzle for me.

Now since then i was diagnosed by a private doctor who checked all my MRIs and my test results etc and did more and she said i had MS with a co-infection of Lymes .... Erchilosis.

I get confused though as my neuro wouldnt give me the diagnosis.

Now I HAVE a new one anyway on top which is Transient Epileptic Amnesia so i am now see my neuro again who is excited as this is rare lol. BUT I have it in my head should i talk to him about this lumbur puncture result again do you think?

I had positive VEPs for MS
Positive Lesions twice seen on my MRI.

Sorry didnt want to hijack the thread but you seem to know your stuff with regards to LP.
Helpful - 0
11119474 tn?1428702170
Thank you Theresa,
Well, today was the first day of the Solumedrol treatment for me.  I was on an IV drip for an hour.  The only bothersome side effect so far is a headache, and thankfully, I don't normally have a persistant headache at all.  So, I'm about to go to bed and I sure hope I can sleep!  I've read on here that a lot of people have trouble sleeping, so we will see. I certainly am tired.


~LinS

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Avatar universal
Yes we are, along with alot of other people. Its not lonely in here. You hang in there too.
'
We are NOT going to let this get in our way from living our lives the best possible. You hang in there too and keep us posted on your updates.

Theresa
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11119474 tn?1428702170
Hey Theresa,
I guess we are both in a tenuous waiting game.  I'm so sorry for all of the issues you are having as well.  I only hope you the best.  Hang in there.

~Linda
Helpful - 0
Avatar universal
Hello,
I am kinda in the same boat as you are. I am 54. I have had cervical fusion on C4 and 5 back in 2000. I was in a car accident in March of this year and had a bone chip off of the metal in my neck and cause a contusion.

I have had numbness for the last several years in my feet and hands. My balance is increasingly getting worse all the time. I have a strange gait. This summer I didnt leave home without a cane. Since its gotten cooler I dont need the cane as much. However I am now having hyperreflexia. Which my GP is having me do a MRI on my lumbar spine (which I am afraid wont show lesions if i have any because I read where they show up in the thoracic and not the lumbar) Please someone if I have that wrong tell me.

I have severe cognitive issues. I had a brain mri in Sept of this year and it showed this
"There are several scattered foci of increased T2/FLAIR signal in the
     periventricular, subcortical and deep white matter and adjacent to
     the corpus callosum,"

Had a LP in Sept and it came back neg so the neurologist told me to forget about the brain lesions they are nothing.

My GP is an angel and is not settling for that Neurologists opinion and I have an appt. with a different Neurologist in Jan 2015.

I am so worried that my GP should have ordered the MRI to be of the thoracic and lumbar spine. I have that done tomorrow. I do believe I was told that I have stenosis in the lumbar area and I hope the drs dont dismiss the brain lesions because of the issues that I have had with my cervical and possible stenosis in my lumbar.

I wish you luck and keep us posted on how you are doing. I wanted to let you know you are not alone. Somehow that always helps me be alittle more (not much lol ) patient in figuring out my darn body.

Theresa
Helpful - 0
11119474 tn?1428702170
Thank you so much!  Actually, I'm not able to get into the MS Clinic until nearly the end of February, so yes, I will call them and ask for consideration if there are cancellations.  That's a long time to wait, and I'm just so frustrated because all this has been ongoing for months now.  :(  I was never any good with "patience".     In the meantime, I suppose my local neuro thinks that a round of Solu-medral may help me, and that starts tomorrow.  I'm a bit anxious about that because of the side effects, but at least it's something to try at this point while I play the waiting game.

Thanks everyone so much for your help.

~Linda
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
I really really hate to say this to you.......my understanding of your brain and spinal MRI reports, the radiologist is actually saying your spinal lesions could be MS but you need a brain MRI to see if MS is likely.

Now when you add the 'unspecific' periventricular brain lesions to the diagnostic picture, it becomes even more suggestive of MS because that means you have 2 out of the 4 identified diagnostic locations (see Mcdonald criteria) for the MRI evidence needed for clinically defined multiple sclerosis (CDMS), which unfortunately put's MS at the top of your list of more likely explanations......

Spinal: "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."

Brain: "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."  

Obviously i'm just a lay person, but I don't think MS can be ruled out of the possibles..........I know this is really hard to do, but your going to need to find a bottle of patience, because it's unlikely that you'll get a better understanding of what exactly is going on, until you've seen the MS neuro in december, so hang in there!

Hugs.........JJ

Oh you could try calling the clinic to see if they can put you on the cancellation list, which may get you an earlier appointment.
Helpful - 0
11119474 tn?1428702170
"right frontal lobe"
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11119474 tn?1428702170
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
Helpful - 0
987762 tn?1671273328
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  

  
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11119474 tn?1428702170
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.  :(

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5112396 tn?1378017983
I second ess.
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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
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