1st sign of "MS" during pregnancy?

[aukristi]

Hi...Let me start off by apologizing for how long this question is.  I seem to be an unusual case.  I did not have my first episode until I was 7 months pregnant and have not had any really since.  I am a married 32 year old female with a child under 2.  While pregnant I experienced "strange" symptoms after/during a trip to see family.  I was 27 weeks pregnant and took a 10 hour car ride to visit family or the Thanksgiving Holiday.  While there I experienced a feeling of almost being tipsy without drinking. Not bad at all but noticeable for me.  I also started noticing a slight weakness in my right leg.  Once I returned to work after the trip I noticed my handwriting (right handed) seemed a littleoff.  I chalked the leg weakness and the handwriting issue to being pregnant and having swollen joints and/or the baby sitting on a nerve.  

[Quixotic1]

Hi, and another welcome to our forum!  I'll be a medical member to jump in, being a physician (not a neurologist) with MS here.  

Your story is a little unusual in that - as you are clearly aware - typically MS is much better during pregnancy and the biggie presentation or relapse ocurrs a few months after delivery.  Other MS mimics tend to worsen with pregnancy - thinking about the more typically autoimmune diseases like Lupus, etc and infections like Lyme Disease - when the woman's immune system is tamped down.

But, with as infinitely variable as MS is, I wouldn't be surprised if the first presentation of MS is quite possible (a little weird, but possible) during pregnancy.  Your symptoms were certainly not weird or off the charts.

So you had a big lesion that immediately began shrinking - not uncommon.  Has it completely disappeared?   And it sounds like no new lesions since then, right?  So you had one aspect of the MS MRI that is typical - they aren't usually stable.

Fie on the careless neuro that did an LP and failed to collect the proper tests and the serum sample!  That tell's you that he is an amateur with regard to MS.  No doc ever wants to do a "make up" LP.

Good for you with regard to the Second Opinion - one of my favorite tests, lol.  It is always a good thing when dealing with something of this magnitude to get another brain involved - specially if the first was inadequate.  Sounds like this neuro is really suspicious of MS - based on the presentation and the appearance of the LP.  The lesion in the corpus callosum is a red flag for MS.

So, the LP and a VEP were negative.  This does not rule out MS.  The Consortium of MS Clinics - a highly regarded source of reliable info states that up to 10% of people with Relapsing Remitting MS will have a negative LP.  And up to 50% of people will have a negative VEP.  those tests are best for helping to rule IN MS - not so much for ruling it out.

So, you would be characterized as having CIS - a Clinically Isolated Syndrome.  That is just one "attack" of symptoms suggestive of demyelination.  (the most common demyelinating disease by far is MS).

In looking at RRMS which is what you would be considered for, the doc needs to show that the disease has spread in time (two or more attacks).  You aren't there yet.  And they need to show spread in space - problems in two or more different areas of the central nervous system.

The next piece of the puzzle that we would need is the result of your neuro exams.   We know from the history of your symptoms that you had problems in more than one part of your central nervous system.  For instance you had numb gums and a weak leg.  The nerves for those two problems occur at different points in the CNS.  

At any point did you have an abnormality on the docs' exams?  This would be something like hyperactive reflexes - especially on the leg that felt weak?  Or muscle weakness anywhere?  Or could they show a loss of sensation anywhere?  Poor balance?

What we would look for in this last part is any evidence from something objective (observable) that the problem had.  That would satisfy the "Spread in Space" requirement.  This is what I didn't hear anything from you about.

Then they need to do the whole big batch of tests that rule out the other diseases that can cause symptoms like MS and lesions on the MRI.  Things like ANA, B12 level, ESR, Thyroid tests, VDRL, HIV, ACE levels and several more.  The mimics must be ruled out before a diagnosis can be made of MS.  You should have already had this done.

Then they factor in the MRI.  In reality, just a lesion or two is enough to predict about an 40% likelihood of converting to Definite MS in the next 7 years and 80% in the next 14 to 20 years.  More than three lesions and you are looking at an 80% likelihood of seeing definite MS by 7 years.  I have this data and it is backed up by multiple good studies.  But, you would have to have "some" objective evidence of damage to the brain or spinal cord on exam.

So, does your current neuro think you have enough exam evidence of CNS damage to call this a CIS?  Or does he think the negative LP and VEP solved the whole MS worry?

The symptom you describe from when you would look down while breastfeeding does sound like L'Hermitte's.  This can be seen in very few things beside MS - like tumors and cysts.  And it does point to the cervical spine as a place to look for more lesions.  Many people have lesions in both the brain and the spine.

I had a little bit of what you are going through.  I had plenty of symptoms and plenty of exam evidence for MS (after the rule outs were negative).  But, my spine MRI was "normal".  My neuro (2nd opinion) had diagnosed me anyway (weakly positive LP)  I had only one brain lesion.  Right after the diagnosis I complained that when I looked down I felt a jello-like vibration in my left thigh.  They repeated my spine MRI on a better machine and - voila' - lesions in my cervical spinal cord.

I know this isn't comforting for you, but it sounds like your neurologist is on the ball.  If it is MS, wishing it wasn't won't do diddly squat.  So, if you do have a problem, better a good doctor finding it and letting you deal.

Do I think you have MS?  Honestly I don't have enough info, but I see why they aare suspicious.

Please stick around so we can help you with what happens and answer questions AND help you know that you are not alone.

Quix

[michelleric]

Just wanted to welcome you to the forum here!

I dont have time right now to say much more at the moment, but I will be back later.

Just saying hello for now,
Michelle

[Armygirl73]

Hello there,

Welcome to the MS forum. There is a lot of great information out here and really supportive members ... I'd say you came to the right place! :-)

I'm sorry to hear all the ups and downs you are going through. Unfortunately, it can be a pretty common issue with MS. It seems that neuros are not as proficient with diagnosing this disease as they could be ... some diagnosis on clinical evidence w/o positive MRIs or LPs, and then others won't do that unless they have that and other positive tests. Some will start you on DMDs in the limbo stage, others don't. In fairness to the neuros, it's a difficult disease to diagnosis.

Everyone had different symptoms, but mostly I think it's because it's a disease that can be attacking you before it ever shows positive signs of appearance. You can "pass" certain tests and not others and have MS.

If your neuro has not told you to do so, start keeping a diary of symptoms. There is also a tracker on here for the same thing. I keep the diary, but that's just because I haven't gotten off my tush to fill in my tracker! ;-)

When I did my diary, I went back as far as I could remember for any weird symptoms I'd experienced. I put how long I had them, an approximate timeframe and what they felt like. I will warn you that you might be shocked at how long you've actually been experiencing symptoms if it is MS. For me, as far as I can remember I started having a tremor almost ten years ago ... it comes and goes, but mostly seems permanent now. I was just diagnosed a few months ago.

I know it is really hard right now ... MS is scary and the internet is full of thousands of stories. Please try not to freak out. There are plenty of us who live perfectly normal lives with some modifications to our routines to adjust. If it turns out that you have MS, we will all be here for you ... as we will throughout this diagnosis process.  

We have some great people on here with a lot more knowledge about all the "technical" things you wrote about, so I won't attempt to go there but I will say you can have some wacky things come back on these tests and neuros who don't do a full work up, and that will drive you nuts. Hang in there though ... you need to get answers.

Blessings,
ArmyGirl73

[aukristi]

I had a follow up MRI 3 months later after I delivered my son. No new symptoms. No new lesions although a 5mm "lesion" was noted but when compared with the original scan was there but not noted earlier "genu of corpus collosum" as it was just better demonstrated on this scan.  After 1 1/2 years I had another follow up MRI.  The radiologist noted again a new "lesion" in the frontal lobe".  In reality it was probably not new but rather the "venous angioma" noted on an earlier scan.  My Neuro wanted another lumber puncture.  I was hesitant b/c I had not had any new symptoms and the "lesion" proved not to be new (had a re-read done of all the scans at one time).  I went for a second opion (BEST ADVICE I CAN GIVE).  He stated that the lumbar puncture I had originally wasnt just inconclusive but it was incomplete.  They did not test for certain items (blood work, proteins, etc) that would help with an MS diagnosis.  He ordered me a 2nd lumbar puncture and an evoked potential exam on my eyes.  Both have come back completely normal.  He wants me to have an additional MRI of my neck to check for "lesions" b/c about a year ago I remember having what I thought was a pinched nerve in my neck.  I was breastfeeding at the time and only noticed it when I looked down.  He stated that it could have been L'Hermitte's Sign. I have read on the internet about it and now I am freaking out.  Just when I thought I was going to get "good" news about MS I am afraid of what the MRI of the neck will reveal.  Has anyone had any experience like this? Any medical members want to comment? Thoughts?

[aukristi]

Over the next couple of weeks I noticed being dizzy when I turned my head a certain way and I started to notice numbness on the rightside of my tongue and gums.  Again this all occured over a 3 week period of time. Nothing immediate. Nothing truly alarming until the numbness in my tongue and gums.  Went to a Neuro who performed a brain MRI without contrast. It showed a 15mm "lesion" in the right brachium pontis".  Being pregnant the Neuro was hesitant to do much but was concerned enough to order an MRI with contrast.  It showed no malignancies and that the "lesion" was decreasing in size.  This 2nd MRI was 1 month after the first one.  In the meantime they had me undergo a lumbar puncture.  It was essentially inconclusive.  A couple of heavy bands were noted but couldnt be confirmed due to lack of serum to compare against and nothing more.