EXTREMELY OVERWHELMED

[aiMelissa]

Sorry for the capital letters but I just NEED someone to figure me out.  I'm 25 years old.  I am richly blessed with 4 fabulous children and a great husband.  I have the all american family, 7 year old son, 3 year old daughter, 1 year old twin boys, a hubby with a great job that will be around forever.  But I am so so so so so tired of living.  

God, where do I start?  In the interest of time and for those that don't want to read my babble, you can skip to the bottom part after that ~~~~~  Long story short, have other autoimmune issues, neuro suspects MS now, symptoms listed after the ~~~~   Thanks for reading!

I came to this board looking for MS answers.  I am having an MRI and LP in the morning at 10 and 11 and I'm VERY mad and scared about it.  I have been "sick" for about 5 years although I didn't know it until late 2006.  I started having problems with pain in 2002.  I had just had 2 miscarriages so I was blown off because my docs though my pain was psyhosomatic from the miscarriages.  Yah, whatever.  

Fast Forward

October 2006 I was diagnosed with and autoimmune (AI) disease called primary biliary cirrhosis (PBC).  I'd had some funkiness with my liver enzymes and my liver and spleen are very enlarged (hepatosplenomegaly).  A week before my PBC dx I found out that I was pregnant again.  My hepatologist (hepa) suggested I terminate the pregnancy (triplets!)  but I won't even consider it.  One baby died and I delivered healthy twins May 2007.

Next disease....after a couple of emergency surgerys (appedectomy & spontanious perotonitis caused by an abcess in my pelvis that came from nowhere)  I was going at it again trying to find out what was wrong. I had a liver biopsy, MRCP, and ERCP and was dx with primary scerlosing cholangitis (PSC) in August 2007.  It's another AI disease that is like PBC but destroys different bile ducts.  "Supposedly" I have both PBC and PSC but most doctors refuse to believe they can overlap.  

Anyway, my liver is doing great now.....all liver function tests are normal (or close enough).

So....

April of this year.  Was walking around any my hands turned blue.  Thought I'd touched something but it happened 4 times.  Was dx with Raynaud's syndrome in May.  Not a biggie, stay away from cold stuff or my hands loose circulation, at least that's what I'm told.  

So in May when my fingers were tingly and numb I thought it was the Raynauds.  Well the numb and tingly fingers turned into numb and tinlgy arms, feet and legs from the knees down.  You know that sensation of when your leg falls asleep and it's trying to wake up....yah, well that's how it feels.  And my arms just HURT.  I've had joint pain for years now but this is different.

I go to my primary care physician (PCP) and she does every lab known to man kind.  My estrogen, testosterone, cortisol and vitamin D is low.  TSH is high.  So I have hypothyroidism and "who knows" whats up with everything else.  My vitamin B12 was "great" so I was referred to a neurologist.

I saw him and tried to explain myself to him, all the while feeling like a complete moron because I don't know what the heck it is or how to explain it.  How do you explain to someone what a strawberry tastes like?  Well...how do you explain what this intesne freakin' pain feels like.

Anywho.  He does a neuro exam and my reflexes are "hypersensative" and my eyes wiggle.  I knew that all along, been happening for a while now.  I though it was being tired, he calls it nystagmus.  Then he said it, what I was worried about "With your symptoms and age, I'm very concerned about the posibility of MS.  Have you heard of it?"  Yes I have.  My uncle has it and is now unable to talk much and can barely walk.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
So that's my story, so far, at least the condensed version.  I'm scared.  I really am.  I know that people say MS doesn't kill you and all that but it does make you feel like ****!  And I'm more worried about living for 50 years and suffering everyday not being able to play with my kids than dieing "early".  I am praying like crazy that  I just have a pinched nerve.  I came home and started reading about things and I have had neurological symptoms for a while now.  It was just ignored because of my liver issues.  

I get this twitchy thing where my head jerks to the left, only the left, and I can't help it.  Don't know when it happens, why it happens, or how to stop it.  It's just like someday it will happen frequently and then go away for a long time.  Some time my arm flips up too.  Left arm.

The wiggly eyes....they just go back and forth, horizonally, really quick and it takes a few seconds to recoop and open my eyes and focus.  It happened each time the neuro shown light into my eyes.  So I know I'm not imagining that.  

The numbness, tingling, and pain....I think I've covered that well enough.  (arms and legs)

Hypersenstive reflexes and wiggly eyes (nystagmus).

I have a hard time remembering things and I trip over my words sometimes.  Or I can't say the word that I'm thinking of.  I don't know how to explain it.  It's frustrating.  I used to be in nursing school.  Had a 3.9 GPA (hated statistics class) and was super freakin' smart.  Now I feel like a babbling fool.  

Balance and coordination.  Well I can do the finger to nose trick.  Both more important things, like walking, not so great at.  About 3 weeks ago I feel walking down the hallway carrying my 1 year old.  Nothing in the way my leg just stopped working.  I stumble sometimes, like I'm drunk.  I also get REALLY dizzy and it lasts for 10 minutes or more, sometimes hours.  Nothing helps, nothing makes it worse.  It's just there.My 7 year old is my cane, he's at the perfect height for that.  

So, as I type all of this out I'm getting more freaked out thinking it's MS.  But it can't be, right?  I mean, I already have 2-4 autoimmune diseases depending on which doctor you ask.  Couldn't it just be a pinched nerve?  That's what I'm praying for at least.  I have my MRI at 10 am and LP at 11 am.  I SO do not want to have the LP done but I'm assuming it's needed.  I'm hoping someone on here talks me out of it in the next 8 hours.  =)

Thanks for lettine me vent/ask questions.  This board has such a great amount of info.  I hope I don't have to "officially" join your group but I can see you'll be great support if I do have MS.

How long after the tests will I know?  Okay....I'll shut up now.

Melissa

[Quixotic1]

Your message is sounding very depressed and futile.  You have as much as said that you are considering ending your life if you have MS.  I believe that you need some mental helath support right here and now.  If you have the perfect family and kids, would you really throw it all away and take "you" away from "them" because you feel bad?  That you are even saying this speaks to the fatigue and terror of the nighttime or to rapidly developing depression.

My strongest advice right now is get to some help.  Sounds like your PCP is very tuned into you.  Print out what you wrote here - or not - and tell her what you told us.

On the other side, most people with MS do not suffer continuously.  Your young age, gender, and the predominance of sensory symptoms speaks statistically to your having a more benign course if this is MS.  Reread that last sentence.  You have three of the qualities that tend to be associated with a milder disease course.

We are certainly here to keep you supported and informed.  Most of us have been trhough something similar.  But, you may need something for depression and/or anxiety until you have more information.  Stay with us, but get some help in reallife, too.

Quix

[mercyone]

I understand you are scared. I'd be scared out of my mind in your shoes.....treasure what you have now the best you can and don't let the scared rob your ability to enjoy life.......even the smile of your blessed children or the helping hand of your son.

Keep us posted.

Mercy

[mae1]

just wanted to welcome you Melissa, i know this is a scary time.
hang in there and keep us posted..
hugs
april

[MrsPriz]

Welcome to the board Melissa :)

Please do post and let us know what answers you get from your tests today.  Ang go lie down or you WILL get that headache!

[floridamom2]

Hi!
I just want to say welcome to the forum!!  Regardless of whether you have MS or not we are a great group of people here available to give you support.  I am glad your tests are done now and that you will hopefully have some answers soon.

In the meantime I will be praying for you!

Kristin  

[aiMelissa]

You asked:   Have you been checked for anti-phosphlipin antibodies, anticardiolipin antibodies, Lupus anticoagulant and Factor V Leiden?  


Yes.  They were all normal but my lupus anticoagulant was "kind of slow" don't know what that meant but I had take baby aspirin to have a successful pregnancy.  Thank you for your comments.  Today wasn't as bad as I'd thought but it hurt.  And my back is still hurting pretty bad.  No headache though.  Hope to know soon.  

[Quixotic1]

I'm so sorry to hear what has brought you here.  First, I want to say that just because your uncle has been severley disabled by MS, does not mean that, if you have it, that you will be, too.  The vast majority are still doing fairly well after 20 years and many live out their lives with little disability.  The severity does not run in families.  If you have MS there is no reason you can't enjoy your grandkids.

Second, you have so many indicators of autoimmune disease that it would be my great suspicion that this is still your problem.  The Raynaud's, the other AI diseases, the liver and biliary problems are not typical of MS.  Yes, many of your neurologic symptoms are pretty characteristic of MS, but also of several of the MS mimics.

Before MS can be diagnosed, no matter what the MRI looks like, the MS Mimics must be ruled out.  One AI disease in particular makes me wonder.  Your history of repeated miscarriages makes me think of Hughes Syndrome, a problem with the blood clotting too easily.  Clots can go to the CNS, or any of the organs.  Have you been checked for anti-phosphlipin antibodies, anticardiolipin antibodies, Lupus anticoagulant and Factor V Leiden?  If not this should be done.

Another huge AI mimic of MS is Sjogren's Syndrome.  This would be suspected if you have a history of dry eyes and dry mouth.  There are some antibodies (SS-A/Ro and SS-B/La) associated also with it, but having them is not required for the diagnosis.

Your case is so complex, I'm not going to be the one to talk you out of the MRI of your Brain and Spine which should be done with and without contrast.  Also, the LP might give valuable information.  I could see if they have not tested you for the antibodies, that they might want to do this before the LP, but I can't make a great argument for this.  I think your doctors are going to need all of the data they can get.  If you are heavy then you might want to request that the docs do the LP under fluoroscopy in the radiology department.  Mine was done that way and it was a painless breeze!

The low hormones and Vit D are definitely often seen in MS, but I do not believe that it is specific for MS.  Low Vit D is seen in most of the AI diseases.

Lots of people that have symptoms and histories suspicious for MS end up having other diagnoses.  We have lots of those people here.
Please hold on.  You know that you are tired of being so sick and so tired and being without answers.  We all understand that here.  MS is not a death sentence and your uncle's case is definitely NOT the normal one.  Treatments are improving and slowing down the disease.

Hang on.  You suddenly now how a whole family right there with you getting your MRI and your LP.  Your neuro will have to tell you how long the turn-around time is.

Quix, MD