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Avatar universal

Road to MS Diagnosis?

Hello all, I appreciate reading everyone's posts.

I'm not diagnosed w MS or being officially evaluated for it, but I seem to be having increasing symptoms that point in that direction.  I know I just have to see how my symptoms & testing progresses, but any comments welcome.

I'm currently taking Detrol, Tramadol & Gabapentin for my symptoms.  I have an 8+ year history of low back pain after a car accident, which moved from myofascial pain to facet joint issues to sciatica-type problems - leg pain, heaviness, lots of nurming and pins and needles / tingling..  

In addition to lots of pain I have increasing weakness in my legs, tripping / stumbling etc.  (I had similar symptoms over a year ago and had an RF procedure, which seemed to help.  My spine doc was planning to schedule me for another RF, but I developed complications after the nerve block test.  I developed incontinence / leaking which they can't really explain why it hasn't yet resolved.  I had an emergency lumbar MRI done and it was largely unremarkable.  I had a pelvic & renal ultrasound done which were unremarkable.

I've since developed severe neck pain particularly when I move my chin to chest.  They dx'd it as cervical radiculopathy and I'm scheduled for an MRI without contrast next week.  I've also been having pain / weakness in my right hand that I thought was carpal tunnel but they now believe is related to my neck.  Also my legs & arms fall asleep really easily & I have lots of ins/needles sensations, intermittently.

I have the cervical MRI next week, follow up w my ObGyn on the in continence tomorrow, and a neuro appt in Nov.  Also a follow up ultrasound in DC and urology appt in December if still needed.  So far they are all hoping I'm experiencing temporary complications from the nerve block & I'll just gradually get better, but they can't yet explain my symptoms.

A couple additional notes.  I had EMG testing done on my legs about 18 mo ago and it was normal.  Around the same time I had nerve testing in my arms - carpal tunnel & ulnar.  It showed mild carpal tunnel as expected but they said nothing that really explained the symptom of waking up with my arms numb / completely asleep.

I also had vertigo testing done around then which was negative, and at that point my neuro made a point of saying no results indicated MS.

An additional new symptom I have is feeling really fuzzy / difficulty concentrating,  that could be due to my deep fatigue, which they believe is due to not sleeping well due to my pain levels - why they started me on the gabapentin.

So bottom line on where I am (I think, lol) - I've had some tests done in the last couple years that could have indicated MS but didn't; I have increasing symptoms that would be on the MS symptoms list or have another cause, but as of yet no other cause has been ID'd.

(xpost - I originally posted most of this on the wrong board.)
7 Responses
5112396 tn?1378017983
As tempting as it can be to wish for a single diagnosis that can explain many disparate physical issues, please remember that even those of us with MS don't have that luxury. We can still have issues that are caused by back injury, cancer, other auto-immune conditions, the general ravages of time, etc.

Your neurologist says nothing points to MS and I have to say that I (a layman) agree.

987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome,

You need to keep in mind, that any time you look up symptoms (sx's) like tingling, numbness, incontinence, muscle spasms, weakness, fatigue etc MS will definitely come up but most of the sx's connected with MS, are also connected to many other more common conditions.  

Structural spinal issues would have to be one of the common causes of the issues you've mentioned, many of the conditions that effect the peripheral nervous system can create similar sx's of MS. MS is a condition that effects the central nervous system though and the similar spine related sx's are caused by lesions in the spinal cord itself.

I did a basic google search "nerve block developed incontinence" and found medical papers etc listing this type of side effect from the procedure. To be honest, from my understanding there isn't anything you've mentioned that couldn't be explained by your dx spinal issues and treatment, so i don't understand why your spinal issues wouldn't be identified as the more likely cause.

Technically MS isn't a dx of exclusion but part of the dx process is for there 'not' to be any other medical condition (red flags leading away from MS), along with having diagnostic evidence eg MRI etc, clinical signs (physical evidence of brain and or spinal cord lesions) for MS to be a possibility. I'm actually thinking, you would probably benefit from a second opinion on, if your spinal issues are the cause of everything or if there is something else going on too.

Cheers..........JJ



  
Avatar universal
Hello, and thanks very much for your comments.  To be clear, I am definitely not wishing for an MS diagnosis.  I have a family member and two close friends with MS so it's certainly not something I would hope for.

The initial neuro statement about not MS was 18 months ago and before a number of my recent symptoms - that was when I was just dealing w vertigo-type issues..  Sorry if that wasn't clear.  In the immedite conversations, my spine dr had talked about referring me for this latest neuro appt because she couldn't explain my symptoms. My PCP also had a conversation w me about this in the last month and the way she framed it was that there would be many things to rule out before considering MS, a bunch of which (but definitely not all) they have now ruled out.

Nerve blocks definitely can cause incontinence, but normally that resolves within 24-48 hours - that's related to the medication that's been injected which can impact other nerves.  It's not long lasting so that kind of complications dissipate quickly.  The other type of complication that can cuase damage is if the needle actually hits something unintended.  That's less likely because the injections are done under fluoroscope, and I also had the emergency MRI to confirm that wasn't the case, and that I didn't have internal bleeding or something else pressing on a nerve etc.

So at this point I am more than two months past the injection, so the Spine & Pain dr told me straight out she can't explain my symptoms continuing.  On the one hand the timing is suspect because the incontinence started so soon after the injections; on the other hand the timing is suspect because they can't explain why the symptoms would be continuing if it was related to that.

I have had chronic pain for about eight years so I am pretty acutely aware of what those symptoms are like (and the ups and downs and variety of them.)  I raised the question because of the new unexplained symptoms I am having, and that I've been through 5 doctor visits (3 different drs), blood work, urine culture, and a bunch of imaging and so far they can't explain it.  They are hoping that whatever it is is temporary and will anti-climatically resolve without explanation (although they keep recommending further testing and eval, which I appreciate.)  If that's the result (and not something more serious) it would be totally ok with me.

For those that responded if the symptoms I am describing don't read like MS to you, that's great to hear.  Thanks.
Avatar universal
" I'm actually thinking, you would probably benefit from a second opinion on, if your spinal issues are the cause of everything or if there is something else going on too"

Yes, that is part of the reason for my upcoming neuro visit.  My spine dr had actually recommended me to consult with 1-2 other doc's before proceeding on any further nerve treatments.  (I have had eval from a couple other doc's so far but they weren't nerve specialists, that was more related to seeing if there were other explainable causes for the incontinence.)  

I totally appreciate that about her - since she can't conclusively explain, she's recommending I get a second opinion to confirm nothing is being missed and/or get concurrence on the dx and treatment so far.

Thanks again all for your thoughts.
1831849 tn?1383228392
Hi PM -

As JJ mentioned, MS attacks the central nervous system. The central nervous system effects just about averything. THis means that MS symptoms can pop up almost anywhere. Because they can happen anywhere MS appears on the list of possible causes for many symptoms.

There is a fairly standard battery of tests used when diagnosing MS It includes some combination of the following.

* MRI of the brain, cervical spine anf thoracic spind done with and without contrast.

* Blood work to rule out MS mimics like Lyme disease.

* Lumbar puncture to look for ologiclonal bands in cerebral spinal fluid.

* Evoked potential tests.

* Nerve conduction studies

In addition to these tests a thorough clinical exam, optimally performed by an MS specialist is vital. The clinical exam is the most import part of the diagnostic puzzle.

If you suspect MS I would look for a neurologist the specializes in MS. Orthopedists, OB/GYNs, pain docs and PCPs will not be able to help you. You seem to have a lot going on, much of it overlaapping. Chasing individual symptoms can be frustrating and futile. If there is a common cause it may make sense to try and find it first.

Many of my symptoms, which I chased periodically, were all connected by MS.

Kyle
Avatar universal
Thanks Kyle that's helpful. It definitely is a challenge with multiple diagnoses when medicine generally treats you one body part at a time. Whatever the outcome I do feel like it's good timing for me to start thinking about having a specialist take a holistic view of my symptoms & testing to date and give me recommendations.

I do want to get through this next round of appointments and exams, and see if I get any new info or more definitive answers. If there comes a point that I do need to seriously consider eval for MS, and/or continued lack of a definitive diagnosis, it's really helpful to know generally how that might proceed - thanks.

I'm not going to jump to any conclusions based off of a possible worst case from webmd (lol) of course, but I do really appreciate info & insights from those who gone through issues first hand.  Actually webmd thinks I have cat scratch fever.  (Kidding.)  :)

Thank you all for your time and perspectives!
Avatar universal
Hello, thought I'd post some updates for benefit of anyone else reading and/or dealing with similar.

I'm now three months past my last nerve block - the projection if I was experiencing temporary symptoms related to that was that it would resolve spontaneously in 4-8 weeks, followed by the hope maybe I was just taking longer than typical.  I'm fairly well out of that window at this point.

I had my cervical MRI which thankfully turned up nothing in particular (just what ypu'd expect for someone in their 40s with two prior neck sprains.)  I am referred to PT for that which starts later this week.   Their current theory on my wrist pain / weakness is that unrelated to my neck.

I've had to increase my detrol dosage (for the incontinence symptoms) which seems to be helping, although comes with an increase in side effects.  I also had to increase the Gapapentin, which is helping my nerve related leg symptoms and will probably continue to be increased further.

A few weeks ago my balance / stability issues worsened enough that I had to start walking with a cane.  That has gotten much worse the last two days, to a point where the cane is barely adequate to keep me mobile.  

This may be random but I've also had numbness developing in my face. one side.  That could be related to either my migraines or TMJ, doesn't necessarily portend something else.

Here's what I have next in the queue for evaluation - meeting with my neurologist on Friday for a comprehensive second opinion on all the nerve related issues.  

I am also seeing my PT on Thursday (she is the one who first recommended me to use the cane, or a walker or crutches - with her agreement, I chose the cane to start out.)

I also have one more ultrasound next week, a follow up to a possible complex cyst ID'd in my first MRI.  The expectation is that there will be nothing of note whatsoever in this, it's to r/o last possibility that there's a cyst putting pressure on nerves somewhere.  But they don't believe that to be the case.

One remaining option on the table is that the leg weakness and difficulty walking are related to the fact that I haven't been able to get back injections / RF procedure, due to the unexplained incontinence.  

One possibility (probably my best hope) is that the neurologist will confirm I'm on the right track / no additional testing needed; the ultrasound will r/o any cyst issues; and then, hopefully even if the incontinence is still unexplained, perhaps they will feel enough has been ruled out that I could proceed with low back treatment.  The medications I'm taking to manage during this time address pain and sciatic symptoms, but wouldn't do anything for weakness.

If that's the resolution, it would still leave me on medication (or considering surgery) for the inc0ntinence, but if I had that but could walk normally, at this point I would take that.
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