Support needed

[kansifornia]

Hello there.  

I am a 43 year old mom, wife and nurse.  Started having numbness, heaviness and tingling in my arms September 2007.  Went to my family doc who referred me to a neurologist.  MRI showed "increased T2 signal in cord at C4 and C5 indicating possible underlying MS."  Brain MRI was normal.  LP normal.  VEP normal.  Neurologist said we'll just wait and see what happens.  Numbness went away after about 6 weeks.  Felt really tired for months.  

Had another episode of numbness and heaviness and slight lack of coordination in my arms.  Neurolgist said, "we'll just wait and see what happens."  

Recently had a 6 day episodes of unsteadiness/vertigo, along with difficulty emptying my bladder/urine retention, and occasional brief (less than 20 seconds) bouts of feeling like there is a boa constrictor around my rib cage.  Repeat of MRI October 2008 showed an "area of gliosis adjacent to the posterior horn of the left lateral ventricle.  This finding is nonspecific."  

Neurologist says he "cannot rule out MS" and wants me to see the MS specialist in our area at the University of Kansas.  There is a 4 month wait for an appt with the MS specialist.  I am frustrated.  I wish I hadn't wasted this year seeing someone who does not specialize in MS.  I am scared.  Thanks for listening.
  
Gentle Hugs (not the boa constrictor kind!)
Kansifornia

[Quixotic1]

I forgot something.  You can attend MS support groups and learn quite quickly who the smart, compassionate and aggressive specialists are and who the stinkers are.  Pick an area that would have a larger number of specialists, like a close city.  When you begin hearing praises of the same doctor, that's a good choice.

Also the MS Society publishes lists of the MS specialists with the area of their chapter, but the catch is that the doctors volunteer to be on the list.  The list is not a recommendation.  I got my first evil neurologist from that list and lost 2 years to his arrogance.

Q

[Quixotic1]

You need an response from me.  Having spent the first 10 years of my life in Wichita and having grown up and educated in Huntington Beach, and being also in the medical profession, you and I are a good match.  

I, too am frustrated by what seems like "wussines" in your neurologist.  But, I was trying to put together what he had to work with.  You had the two attacks to count for the first part of the diagnosis of MS.  You had one clinical lesion, the problem in your arms which was accounted for by the lesion at C4-C5.  What he needed was evidence of what is called "Dissemination of the disease in space" or evidence that the disease had hit a different part of the central nervous system.  This was completely lacking until possibly now with the lesion (possibly gliosis or scarring) near the horn of the ventricle.

Now, the question is whether he had enough info to decide to treat you as a presumptive MS with the 2 attacks and the one lesion.  He did the LP and the VEP and they were negative.  An SSEP of your arms would be predictably positive because of the location of the known lesion in your cervical spine - so the SSEP would not have been of use.  None of this rules MS in or out.  At that point, if he couldn't decide, I feel he should have requested an opinion by a specialist - as you were clearly presenting atypically.  Just waiting is not the best option, though sometimes its all they can do, but not before exhausting every avenue (like a 2nd opinion by a subspecialist).

I assume he did the full blood work battery looking for mimics - ANA, ESR, Antiphospholid Antibodies, VDRL, HIV, ACE, Lyme (by Western Blot), Copper Ceruloplasm, etc.

There might be the question of a relapsing Transverse Myelitis, which can be a standalone disorder or part of MS.  It can also be the presenting thing (along with later optic neuritis) that make up a disease called Neuromyelitis Optica or Devic's Disease.  for this there is an antibody test for which 70% are positive - the NMO-IgG.

If the new specialist feels the new area near the ventricles is more like an MS plaque, then I suspect they will decide to treat.

Do you know the strength of the MRI they did, especially on the spine?  Images are hard to see in the spinal cord and the best images are obtained on MRI machines of higher resolution.  Strength is measured in the Tesla units of the magnet in the machine.  The best is if the machine was a 3T, but 1.5T machines are much more common.

Another important point is to look at what other diseases will cause what you have been though.  There are far fewer things that cause lesions in the spinal cord, than those that cause lesions in the brain.  Spinal lesions must be viewed with high suspicion.  A minority (20% or less) of people with MS present with spinal lesions only.

As for waiting for the MS Specialist  at KU (My whole family are Jayhawks - ROCK CHALK!) you might ckeck to see if there are any other highly respected specialists.  One place to look is msneuroratings[dot]com.  There are a couple of posts that speak of MS specialists, one at KU and another at MidAmercia Neuro Science Institute in Lenexa.

It's hard to wait, but you are welcome to hang out here with us.

Quix, MD (not a neurologist and here unofficially)

[essdipity]

Hello and welcome.

What you describe sure does sound like MS. I too wish your neuro weren't such a wuss. At least he is now admitting that he doesn't know enough about MS to diagnose it, so you can move on to someone who does.

It is indeed maddening to have to wait so long to see a specialist. I don't know how to help you with this, but I do have some suggestions as to what you can do meanwhile.
Gather all your test results yourself. Although your neuro will forward them, you should have your own copies of everything. Make sure you have had the appropriate tests to rule out the mimics of MS, of which there are many. Prepare a timeline of all your symptoms, when they occurred, when they resolved, and how your life was affected by them. Don't speculate as to what could have caused them, but just be as factual as you can.

Have you had evoked potentials testing? The specialist is likely to order this, but you can save time by having the tests beforehand. Same with a lumbar puncture. The idea is to give the new person enough information to make some determination sooner rather than later, keeping more delays to a minimum.

If a lot of this sounds like Greek to you, spend some time, a lot of time, actually, reading our Health Pages. (See above right.) There you'll find a wealth of information that should answer lots of your questions. I don't know whether you have MS, but I do know you need to give a name to whatever it is that's causing all those symptoms.

Also meanwhile, feel free to join in on our discussions and commentary, some of which is actually fun!

Again welcome.

ess