Had 2 spinal taps within 8 weeks...one showing 5 bands...next one showed just one..so I'm back in Limboland

[Erin65]

Hi, Everyone.

Deborah here...longtime reader..I've posted only a few times before.  Short history: 1989: foot drop for 2 months, left leg weakness, followed by left arm; no left hand grip (left handed), etc.  Crutches for a year or so, resolving after that.

Vertigo (for days at a time, as if everything was on a record player (but me))...bilateral leg weakness/left-sided arm weakness followed thru the years - each time resolving after short periods (a week or so). Leg/arm weakness would come 4-5x year, sometimes more.  But generally, I was doing pretty well. Numbness accompanied the weakness, but really only in "patches" - I mean, I could have drawn a rectangle around the area, etc.

Then fast forward to last March...and the legs stop taking my weight...and I wait...for it to resolve. But it doesn't.  In April sometime (not sure when this started, but it's still with me), I'm (sorry, graphic!), um, trying to use the toilet...and I can't feel if I've wiped.  Huh?  I'm numb "down there", and on my thighs, up to my belly button. I'm also numb on my upper left shoulder since then.

Okay.  So.....lots of MRIs...guess what? They're clean.  Except for "a single, nonspecific, punctate, subcortical, white matter focus of increased T2 signal is noted of the left parietal lobe".  Not classic MS stuff, as you all know.

June: brings incontinence - didn't feel the need to go, or the going, just "went".  Not fun.  : /  I've had urgency for several years; now I just use the bathroom all the time...avoiding unintentional voiding...ha ha.

So, basically, my neuro (whom I really trust, and like, and respect), found decreased ankle reflexes initially, and after my using a cane for a few weeks, suggested a spinal tap - done in May.  I'd had one done 20 years prior (at the onset of all of this which was inconclusive.  

Results? Bingo - 5 bands.  Suggestive of MS.

But....because all the other tests (even spine MRIs) are all coming up negative, he/we confer with the UCSF MS clinic and together they/we agree to "re-do" the spinal tap.  To rule out a lab error.

We redo the tap...2 weeks ago.  In between both taps (and probably not effecting the outcome of the second), I did have a 5-day solumedrol infusion - which helped a great deal, to begin with...but the good aftereffects were short-lived.

2nd guess what?  The follow up spinal tap was negative.  Showed only 1 band.  So the first was a lab error.  And MS is now ruled out.

Now what, oh Wise Site Users?? : )

I've been tested for every other mimic, so I'm good there.  Any suggestions, other than the obvious...wait it out?  

My first reaction was the validation I'd received from my neuro (after 21 years) was singlehandedly taken away through the follow up phone call, but I really just want to be able to treat my symptoms.  My left arm tires too easily (and now have a tremor), my legs don't work right and I'm numb in places.  It ain't right.

Thanks for reading....

Deborah

[Erin65]

Wow. Thank you, Missy.  I hadn't heard/read that before your post.  

Funny, how (as I read all of the interesting posts on here), I come back to something very familiar...we sure know our bodies pretty well, don't we?!

And we keep on keepin' on...!

Okie doke.  Onward.

Deborah : )

[missy72450]

When I had my LP one of the things I could not do was start steroids before because it may skew the results. So i had to wait until after. My Neuro and my internist agreed upon this.

Just a thought

Missy

[Erin65]

Hi, Red...thanks for your support! I've read a lot of what you've been through and know you, and the others, "get it"!  I'll check out Marin County.  My neuro isn't with UCSF, but I did have a consult there...they're the ones who told my neuro "maybe she doesn't even have the bands?"...so we did the 2nd spinal tap.  : /   Curses!  Best to you...I really appreciate the encouragement.  
Deborah

[Erin65]

Hi, Michelle,

Just wanted to say you don't need to be symptomatic for the tap; if the bands are there, they're there, or so said my (nice) neuro... : ).  Good luck to you!

[RedFlame]

Hi Deborah,  I''m so sorry about what is happening to you!  Unfortunately it happens all too frequently.   I really wish someone could explain why doctors are so relunctant to diagnose MS.  

I'm with Helen41, why take this recent test as gospel, perhaps the early one was the right one.  geesh

I see you are from San Francisco and went to UCSF.  We have had a couple of people go there who had a negative experience.  

I grew up in Marin county and am wondering if there isn't a clinic there or even in Sonoma county.  Just a thought.

In the mean time hang out here with us.  There are many in same or similar circumstances----hang in there.

Red

[michelleislay]

wow, i've been checking out this group for about 4 weeks now, symptoms of ms have led me here (i'll describe at the bottom).  i have been waiting nearly 5 weeks to be referred to a neuro., and i as of yet, still have no date.  i can't believe how many people seem to suffer for years--even decades on end with no results!!  

thank you everyone for all of the posts here and i too will be more assertive about my health with my "nice" doctor.

question--for a spinal to come back as positive (with bands) does one need to be symptomatic?  i certainly am symptomatic now and i'd hate to miss out on results just because of the long queue at the neuro's office.  

thanks to everyone for your wonderful advice.  this is an important thread for those needing to advocate for their own health!!!

maybe i should add my symptoms-they include paraesthesia (numb/burning/itchy/tingling) left side of body, lt. thigh and a few other patches (going on 8 wks), what i have only ever found described as an ms hug (band of tightness, 6 inches wide, starting from my belly wrapping around my left side) dizzyness, extreme fatigue, low grade fever and just begun to have some muscle weakness in my arms--especially after nights of not much sleep.

[Erin65]

Thank you, Lulu, for your support, and thank you for all the work you do for the site.

I don't really know what I'd do without this group.

A really appreciative Deborah  :)

[Erin65]

Hi, Mary,

First of all...thank you for your post. I read it (and re-read it)...and get that I need to be more assertive, and you make many valid points.  My doctor hasn't given me the test you describe (for numbness).  I'll ask for that.

And I can see by your post that you've experienced much of the same.  Kudos to you for sticking to your guns and recognizing what you need - what works and what doesn't; that's what I must do, I know that.  

I must say, my current neuro has allowed me a perm. disabled placard, knows I have some sort of disability, just cannot define it.  I work full-time (but have recently applied to work from home, only because I'm exhausted on all fronts:  I commute by train, have two boys, ages 5 and 11, and am separated from my ex...but we live in the same house (...btw...how's that for stress?!)).  

You asked about the "inconclusive" tap...my original one was done in '89, came back with handwritten notes on it, saying something about "trace proteins found" in the spinal fluid.  I just remember my neuro back then (different doctor) said something about the test being "inconclusive".

I have never been followed by neurologists for this; I've seen several over 21 years, and only when my symptoms were really difficult to ignore (i.e., weakness plus vertigo, etc.).  But because it was never worse than the initial onset (2 month foot drop, total left-sided weakness for 6+ months), and it always resolved, I just went on as before.

But this last bout has lasted 4+ months (as opposed to my "usual" 10 days, after the presenting signs)..and I have never had this lasting numbness, arm tremor, incontinence...so we started the round of tests again.

The reason I see this neuro is because he had thought I was suffering from complicated migraine (20+ years of severe migraines); he doesn't think that now.  He told me via telephone he knows there's something wrong...he's just not sure what.

I'm just having a tough time being back where I started..."do not pass "go"...do not collect $200!"  : (

I appreciate your advice, really; it has helped me to focus my thoughts.

Deborah (and "Erin" is just a nod to Ireland : )...)

[Lulu54]

Hi Deborah,
Ditto what Mary said.  Just reading her response has me nodding, agreeing and prodding her on in my head.  We all have doctors that are nice people, but nice isn't good enough when it comes to our health.

I hope you can digest all that Mary had to say and know that our tough love around here can be painful to hear but in the end is usually  for the best.  

hugs to you and please let us know what comes next,
Lulu

[twopack]

Lordy, lordy.  I certainly wish it was possible to unring a bell 'cause I would wave my magic wand over all of Californee and wipe any thought of even doing a repeat LP out of everyone's memory and future contemplations.

Why oh why oh why do so many neuros look everywhere for proof positive of MS and seem so blind to the evidence sitting right in front of them?  (Don't worry, I'm not really expecting an answer to that.)

Deborah, there is a very simple test that will show your numbness.  Perhaps your neuro has already done it?  You close your eyes while the doctor touches you with various sensations and degrees of pressure.  Your job is to say when you feel it and if it is light, sharp, dull, cold, vibrating, blunted.  If you don't feel it you say nothing and that relays the neeeded information.  It's a real and valid test.  

Of course, I'm pretty sure you have had this done many times but if you haven't you most definitely need to tell this doctor you like him as a friend but will be breaking off the professional relationship.  

So it comes down to why your doctor doesn't trust his own findings.  He doesn't trust his own physical exam.  He doesn't trust his ability to diagnose and start treatment so consults with someone else and then just caves to their call.

Please don't tell me this doctor you like and respect is letting you, indeed MAKING you, live with increasing symptoms over the years without offering as much as any treatment.  How considerate of him to not berate you for the cane and crutch usage.  

I don't know how old you are but there is not a age advanced enough to make incontinence or perineal numbness normal for a woman (or a man, but I firmly believe a male would be taken seriously since pregnancy and hormone crack don't keep their bodies in constant flux).

So what does this doctor do for you?  How does he expect you to get financial help, assistive devices, medical or job assistance with no diagnosis?  Isn't that the question that follows immediatley after your name and address on any of those forms?  Has he ever referred you to a orthopedic specialist to rule out spinal problems?  Has he ever considered trying you on a DMD to see how you progress - or perhaps don't?  Does he at least sign the script for a handicapped placard for you?

I don't know if you have MS Deborah.  Apparently your neuro doesn't know either.  If he hasn't done more than scratch his head (and other body parts) for 21 years I do believe he needs a wake-up call of some sort.

If I sound angry, it's because I am!  I get frustrated at my own doc sometimes because he goes on and on about my case not being 'classic' (brain lesions aren't exactly where he would like them to be and LP was negative).  I'm about ready to tell him to just get over it already!  Like your doc, he's a very personable guy.  But I stay with him because he offers me anything I want to try to fight against this disease that sneaks around leaving only subtle clues it's invaded me.  After six months under his care I'm hopeful and feeling a bit better than I have in quite a while.

My MS specialist (who is not a neuro but works in a center that treats only MS) did offer to send me for another opinion.  (FYI - I've had symptoms for 20 years too and this doc was the 2nd opinion on this diagnostic go round after #1 changed her mind about having the balls to diagnosis.)  His offer was tempered by the verbalized fear that there was always the chance opinion#3 would refuse to diagnosis MS based on non-classical test results and send me home with nothing.  I listened and appreciated his warning echo of what I already feared.  I told him to stop freting.  I was ready to stop testing and start treating.  He believed in his exam findings and my reported symptoms.  He had shown me lesions on the 1990 MRI and more on the 2009 one.  I could live with his discomfort about their exact location.

Whew.  Sorry about all that Deborah!  Talk about TMI.  I truly apologize for ranting on and turning this into the personal rant that has been brewing inside me, begging a voice for a little while now.  I do thank you though for providing the trigger that gave words to my feelings and clarity to previous uncertainly.

I do hope that something in this posting will inspire you to find your own voice and direction.  IMO you are being shortchanged, overlooked and underserved.  Being shafted isn't made better by service with a smile.

One last question.  What was the basis for the inconclusive LP finding years ago?  Inconclusive isn't negative, is it?

Now turning you over to the originally planned topic while I attend a meeting of Dr. Quix's On-and-On ANON support group.  I'm required to report this relapse.

Mary (who is certainly going to scan and save before I hit the Post Comment icon!)

[Erin65]

Sorry - my IgG index wasn't elevated, but when my neuro gave me the diagnosis of MS, he said the index wasn't necessarily elevated in everyone, and the fact that I had the 5 bands was enough of an indicator, etc.  Deborah

[Erin65]

Thank you for your comments, Julie.  It is really discouraging, and yet being able to post here and get support is so very encouraging. The numbness is the worst because it's always present.  If I'm sitting, I don't notice my legs are weaker than they should be...and if I'm not reaching for something, my left arm doesn't "overshoot", etc.

I had convinced myself over the years that a diagnosis didn't really matter.  Well, it didn't, when this (whatever it is) would come and go.  But now that it's been here for 4 months, I'm so tired.  I just want it to end. And it seems like I need a name for it before I get treatment, which is so frustrating.

But thank you so much for your kind words.  Everyone here is so helpful. I read others' posts and marvel at the support you give each other.  It's amazing.

Deborah

[Erin65]

Hi...and you have a point...I didn't think about the 50/50 issue until talking with my brother (he mentioned 2 out of 3 would be more indicative of the likelihood of a positive or negative, but that 50/50 is just, well, 50/50...!).  The clinical signs/symptoms seem more significant to me as well. Thanks for your input :)

[Sarahsmom46]

First let me say how frustrated I felt when I read your post.  But, don't let this nes LP stop you in getting properly diagnosed. You doctor can diagnose MS without a positive LP as you already know or hve read in our Health Pages.

What did the rest of the LP show, such as the IgG index? Was that normal?  

You can be diagnosed by the one lesion, the one band, and especially the positive clinical exam.  Yep, your doctor if she is confident in what she does can give you a diagnosis on what she is seeing in the neuro exam.  

I'd sit down with her and have a good talk about all this. The mimics have been ruled out, you have one lesion, a positive response to steroids (points to something inflammatory), and if your clinical exam is positive then what they didn't find in the LP is not as relevant.  

Maybe if she is not comfortable putting her name on the diagnosis, many neuros are over cautious about this, then she can refer you to someone else who is possibly more experienced and more willing to see the whole picture rather than a test result and hopefully get off the fence.

I sure hope you don't get discouraged about this recent test result.  Stay focused on what you need to do for yourself.  

Julie

[helen41]

Frustrating that despite you having symptoms, they decide the clean LP is the correct one. There actually is a 50-50 chance that the other was correct, even if they completely disregard your symptoms.
It does sound as though they have found clinical signs, though, with your decreased reflexes. That is validation as well and with that in mind, you can only assume they will take your word for the numbness.

[Erin65]

Hi - thank you, and thanks for the response.  The reason they thought there might be a lab error is the fact that the other tests are so clean. Only one lesion (brain) on MRI, negative VEP (but haven't had vision problems) and normal somatosensory test (was hoping that the last would show the numbness, but it didn't).  

I'm just wondering - isn't there ANY test that would show the numbness I'm experiencing? There's got to be a way to show that other than my saying "it's there".  ?!  

Deborah

[LATW]

I have no medical help on this but I am so sorry!! How upsetting.  Why did they think there was a lab error to start with?  My MRI's are not clean but they are not strongly pointing to MS.  
My LP showed 14 o bands.  That is a lot for not having more lesions than I have.