MS?

[ka217]

Hello!

Finally after 10 months in the neurology community, I figured out that there was an MS community.  Let me bring you up to speed.  Here is my original post from last March:

Hi,

I am a 28 year old female who has been having pressure and numbness on the right side of my face.  My initial diagnosis was a sinus infection.  I went on two rounds of antibiotics and there was little to no improvement.  My doctor ordered an MRI.  The results came back reading like this:

"INDICATION:
Ventricles not dialated.  Brain volume normal for age.  No hemmorrhage, mass, acute infarct, or extra-axial fluid collection.  There are several scattered punctate foci of T2 hyperintensity in the subcortical white matter of both cerebral hemispheres, involving the right and left frontal lobes, the left insula, and the left parietal lobe, measuring up to 6 mm in diameter.  Appearance is nonspecific.

IMPRESSION:
Scattered nonspecific subcortical white matter hyperintensities.  Diagnostic considerations include chronic microvascular ischemic changes, which would be unusual in a patient of this age, as well as demyelination, although the pattern and distribution of the lesions is not typical for demyelination."

The only thing i got out of my doc is that I don't have a tumor and didn't have a stroke, but could possibly be MS, although the pattern isn't typical.

Since then the numbness on the right side of my face is better, but last night the numbness came to my left side of my face.

I can't get in to see a neurologist until April 13th and am scared to death.  I keep waking myself up at night wondering what is wrong with me.  If anyone can provide me any insight on what this might mean, I would really appreciated some advice.  

**Here is my story now:

28 year old, female, overweight, from MN

I had an MRI done in 2005 as well, but the highlighted item on that was a retention cyst on my sinus.  When she read into the results more, there was some mention of the "several scattered punctate foci..." as well.  It just wasn't as highlighted.  There were no changes in the pattern of these "white spots" in 4 years.

  I saw a neurologist last March to follow up on the items mentioned above.  He was an MS specialist.  He did an MRI of the cervical spine and tons of blood work, which revealed nothing.  He also did an Evoked Potentials test and I had an Optic Nerve conduction.  All of which revealed nothing.  He didn't feel that this was MS.

Now...here I am 10 months later and I started feeling dizzy and having the numbness on the right side of my face again.  Also dealing with fatigue.  I am being treated with antibiotics from my GP, as she thinks it is a sinus infection.  She also told me to maybe go to the dentist to make sure I don't have some kind of infection in a tooth.  I have mouth guards that I am supposed to wear at night, due to me clenching and grinding my teeth and I haven't been wearing that lately.  I have also read that sleep apnea (I am overweight and snore...so my husband tells me) can possibly cause some of these symptoms.  

Today I have started to experience some pain in my foot, along with some numbness in my leg (all on the right side). I am also having numbness in my lips and tongue this morning...and feel like I need to cough out some stuff from my throat!

Sorry this is so long...but I am trying to determine what my next steps should be.  Should I consult my neuro again?  Possibly do an LP?

Thank you,

[ka217]

Hi!

Wow!  I just read you story in your profile with your MRI findings.  The only difference I noted is that the locations of the "spots" are in different areas.  Otherwise it sounds like our stories are very similar!

I think my biggest problem so far is the constant headache and dizziness...and then there is the facial numbness and this concern about hearing my pulse in my right ear (the side where all of my sypmtoms are present).  

I am scheduled for another appointment with my neuro next week (this will be my second time seeing him).  He is an MS specialist.  He has not done an LP yet.  Have you had one?  He did however order a repeat MRI...this time with and without contrast.  So, I guess we'll see how that goes!

I am a mother of two (6 and almost 3) and it is so hard to function some days.  I am sure I have some anxiety of the unknown and am completely stressed out at work (I am an accountant and we're trying to close our books for year end).  I know this doesn't help the situation!  

When I talked to the nurse yesterday, she found it odd that I had made it through the entire summer with no symptoms...it seems like they are triggered by cold instead of heat!  We'll just have to wait and see what happens at the appointment next week!!!

Thanks again for replying to this post.  It is always nice to hear from someone else who is experiencing something similar...makes me think I am not completely crazy anyway!!!

[samandsprout]

Hi, there.  You sound just like me!

When I was 28 I had some wrist numbness and asked my dr about it because my mom has MS and I was nervous.  Because of my family history, she sent me for an MRI not truly expecting to find anything, but rather to put my mind at ease.  But, it turned out I do have lesions, many of them punctate, though 2 larger ones, and they are also not typical MS lesions.  But with my family history, it is a big concern.

I also have only minor symptoms, mostly sensory.  
I have had repeat MRIs at 3 years, 5 years, and 2 MRIs this year.  One radiologist's read of the films suggests little to no change (a couple lesions may appear brighter/larger).  A second opinion neuro thought she saw more change than that, so she gave me a CIS diagnosis (which would qualify me for DMDs).  

My main neuro has tested me up, down, and sideways, and no other tests point to MS (negative LP, VEP, BAER, normal neuro exam), nor to any of the mimics.  I have either remained on a mild course of MS for 7 years, or I may be one of the lucky ones who will never progress to definite MS.  I am still trying to decide what to do about DMDs.  

I just wanted to share my story with you, and the advice I have is to keep asking for tests until you get some answers...I hate the not knowing, but unfortunately with MS there is often a long period of not knowing.  Luckily my neuro is open to continued testing, and I have asked for things I have heard about here on this forum, and he has agreed.  This forum also pushed me to get a second opinion, which got me my CIS diagnosis.  So, stick around, it's great here!

I have a question for Quix, as I have heard you say this many times about the better prognosis for those presenting as "female, young, sensory symptoms"...do you have any resources you can point me to where this is evidenced?  This is me in a nutshell, so I feel better every time I read it, but I'd love to know more...

Best,
Laurel

[shawnie31]

Hi there, I don't have much detailed info to offer you like Quix. She really puts everything out there for you to read and understand.

What I wanted to mention to you that our MRI are quite similar. My white matter lesions aren't at the typical MS place but I'm to young to have ischemic changes shown in the MRI. When my symtoms started almost 2yrs ago I had alot of facial numbness, forgetfullness and fatigue, urinary issues.

My spinal showed nothing, sleep study done one month or so ago showed insomnia. I'm still in limbo, I'm taking Baclofen for muscle spasms and Effexor which is suppose to help with my mood and energy level but it does nothing for me at this point.

In my experience with what I have been going through is that you need to be patient. If it's MS or something else neurological it will take time to figure out. Your symptoms will change, get worse, new ones may come, you may not be able to function like ususal ect.. Dr.'s seem to want to wait for more symptoms to show before making a firm decision.

I am also approx 50lbs over weight, my spouse used to blame my fatigue and pain due to in-activity. But that's not the case any longer. I can barely function at home with house stuff now so things are on the decline but I'm hoping with time I will have answers to get back to normal.

Take care and good luck

[ka217]

Thanks.  I am in the process of scheduling another appointment with my neuro with a repeat MRI...I will make sure I mention this to him again before we do the scan.

I would love to hear back from anyone who has any advice on this!

Thanks!

[Quixotic1]

Again, I'll be back later, but several people here also know a lot about dizziness and pulsatile tinnitus.

Typically they do a special MRI that focuses on the 8th nerve pathway.

Quix

[ka217]

Another symptom I have is I can hear my pulse in my right ear all the time.  I googled this and found that this, combined with the dizziness and numbness could all be due to something called acoustic neroma (sp)?

Would this have shown up on the initial MRI's, or do they have to do a special scan for that?

[ka217]

Good Morning!

I just read through your post again and have some additional information:

I actually had my first "attack" in 2005.  At the time, we didn't realize it was an attack...but now looking back at the MRI results from that time, it appeared that there were these "white spots" on the MRI then too.  When they compared the two MRI's from 2005 and 2009 there were no changes, but the symptoms were the same.

I am assuming I had a "normal" nero exam.  When I saw him, he didn't really spend a whole lot of time with me.  Could you explain what a "nero exam" should consist of?  I want to make sure I am following up properly.  

They did bloodwork and tested me for Lyme (which I understand can present the same symptoms), Syphillys (sp), and a couple of other diseases which I can't recall right now.  I also understand that most of the time the Lyme test isn't accurate.  Could this be a possibility?

The numbness in my face is more of a tightness and pressure feeling I guess.  I wouldn't describe it as pins and needles...and I can feel my face if I touch it.  It extends from the top of my right eye down to my chin and back behind my ear.

Over the past 5 years I have also had some pain that extends from my left armpit into my left breast...a radiating pain that comes and goes.  I have had mammograms and breast exams which all revealed nothing, so I am wondering if this could be associated with whatever might be going on with me.

Thanks for listening!  I look forward to hearing from you,
Kelly

[ka217]

WOW!  That was a lot of information!  VERY HELPFUL!!!  I should have been over on this forum sooner!!!

I will definitely take your advice and will be contacting my GP on Monday to see what the next steps should be!

Thank you again!  It's great to have a place like this!

[Quixotic1]

Ooops!  Yes, you should have a evaluation for sleep apnea.  It can cause many of the symptoms seen in MS, but would likely not cause such assymetrical sensory symptoms.

Q

[Quixotic1]

We can't diagnose anything online, but I can talk about what you have told us in the context of MS.

First I have to agree with the assessment that MS is in the picture.  Now, let's look at the rest.  It sounds like you had this first bout of pressure and numbness in the right side of your face about a year ago -->?sinus infxn w/antibiotics --> no help --> yada yada.  When you say numbness, do you mean really numb when you touch it on the outside or a numb, pins&needles feeling?  Where exactly was the numbness ? (how high did it go on your face and how low did it go?)

The MRI must have been almost a year ago.  It showed scattered lesions thoughout the white matter in mostly a subcortical distribution.  I would hardly call these punctate (pinpoint) if they are as large as 6mm!!  That is a good-sized lesion.  I agree with your doc that these may not be classic for MS, but atypical for MS hardly rules MS out.  More and more the MS field is noting how wide the range is of MS symptoms and lesions.  "Typically" the subcortical area is the place you see the lesions of small vessel ischemic disease which is high blood pressure, diabetes, migraines, etc.  These lesions are usually tiny.

However, MS also is know to cause lesions there.  It is not just one or the other.  You would like to see the MS lesions in other parts also.  But, the radiologist is correct that you are the wrong age for small vessel disease.  And "typically" the lesions of small vessel disease do not cause neurologic symptoms like you have.  Any diagnosis should explain - NOT just the MRI lesions - but also the symptoms.

Your doc is following the recommended procedure.  When you had had just the one apparent attack of symptoms, he was looking to the MRI to give him more evidence.  He didn't think it did, so he did the MRI of the Cervical spinal cord and a VEP - those were negative so he didn't have any more evidence that pointed to MS.  It is not clear if he thought that they ruled out MS.  So far nothing you have told us has ruled out MS.

Let's quickly walk through the process for putting together the evidence for a diagnosis of MS.

1)  First the doc looks for a pattern of attacks of symptoms that can be seen in MS.  You have had one of these, with the R-sided facial numbness.  This would be a problem with a nevre called the Trigeminal Nerve and is often involved in MS.  But until recently you only had had one such "attack".  Then the docs look for a period where the symptoms improve or go away.  This did happened to you.  

But now you appear to be having the second attack, this time with numbness on the other side of your face, fatigue, and pain and numbness in your right lower extremity.  These are all symptoms consistent with those seen in MS.

2)  The second thing the docs need to do is document objective evidence that there has been damage to at least two areas within the Central Nervous System.  They do this with a good neuro exam and testing.  Until recently you only had the problem with the sensation in your face.  Was your neuro exam normal last year?

3)  The neuro would then look at the MRI. Without, good objective evidence on the exam or from the VEP, your doc would not have had enough evidence to diagnose MS unless there were specific kinds of lesions seen on the MRI.  He would probably have advised to wait and see.

4)  An critical part of the diagnosis of MS is looking for all those many diseases that can mimic MS.  Most of this is done through a whole bunch of blood tests.  I assume all of this was negative.

So up until recently I would have agreed that the info just wasn't there.  But, with your new onset of several more symptoms, you now have two attacks.  Now we need to know two more things.  What is your neuro exam like now?  You need a good exam.  Your PCP might be able to do some of one to see if there are any new findings.

You also need a new MRI which could be ordered by your regular doctor.  It would be important to have that MRI done on the best MRI machine available.  when it is ordered it needs to specify that they are to follow the "MRI Protocol for Diagnosis of MS".  If more lesions have appeared, it could cinch a diagnosis.

Those two things should be done, I think, before an LP, but an LP might also become necessary.

Now, you should notify your GP that you have these new symptoms.  You GP should notify the neuro and get you in earlier than April.  This is exactly what the neurologist was waiting for - another attack.  If the neuro still cannot get you in earlier, then ask to see another one, preferably an MS specialist.

What you are going through is quite consistent with a very mild presentation of MS.  The abdominal pain is not so common, but happens.  The very isolated and asymmetric nature of the symptoms is VERY characteristic of MS, though to someone who knew little about MS it might seem like you were a little nuts.  Join the party.

I just looked all of this over and it is clear that I am not having one of my clearer days.  I hope all of this made sense.  In the context of MS, I think you are having your second relapse and you need a repeat MRI of the brain AND the full spinal cord.  An LP might still be needed depending on the results of the repeat exam and the new MRIs.

I hope this helps and that you stay with us to lets us know how this unfolds and to help answer questions and give support.

Quix

BTW - IF this is MS, you are presenting with a combination of things that make it likely that you would have a less severe course - female, young, sensory symptoms (as opposed to muscular ones)

[ka217]

Thanks for touching base!  I am very interested in what you have to say!

I hope you had a wonderful New Years!!!

Kelly

[Quixotic1]

Hi, and Welcome to the forum!  I have a fair amount to say to you, but the New Year's festivities are beginning and I'll be back to tlk.

Quix