Mystery diagnosis

I feel like I’m living in an episode of mystery diagnosis.  You know, that show on the discovery health channel?  My life is really beginning to resemble it in a big way.

I had my appt with my neuro yesterday.  He is great.  He had lots of good info but no real answers unfortunately.  He says with negative acetycholine antibodies and negative anti MUSK antibodies along with a negative EMG the likelihood of me having myasthenia gravis is pretty low.  I could still have it but it’s becoming more unlikely with each test.  I am to still go for the single fiber EMG in Sept though, if for no other reason than to met with that doctor and get his prospective. 

He asked what my biggest complaints were and I answered the shortness of breath and the muscle weakness that is so bad that I cannot do certain things anymore.  I can live with the double vision and swallowing difficulty and droopy eyelid but the other two are quite debilitating at times.  I mean I was SOB just walking from his waiting room to his exam room!!

He wants me to meet with a lung doctor (which I was already in the process of setting up) and aggressively pursue that avenue.  We had been looking at this as a primary muscle disorder that where the weakened muscles were causing the SOB.  But his theory is that this could be a primary lung issues that is causing me to chronically be low on available oxygen throughout my body which would make my large muscles weak.  It makes sense and is entirely plausible.  Heck, at this point anything is plausible!!!

We are also going to do an MRI of my brain to rule out MS.  He doesn’t think it could be this but just in case we will do that.  He also said that there is NO WAY this is ALS.  I was being asked if it could be that and he reassured me that it is not and that if it was it would have been found on the EMG.  Hopefully he’s right about that one.

I’m not sure what God is testing me for on all this and I’ll admit that my faith is really being tested at this point.  My usually upbeat spirit is wavering.  I’m doing my best but this is all getting so frustrating.  I know this journey He is putting me on is for a reason.  I’m so trying to keep the faith.  I just wish He’d ease the burden somewhat though.  An answer and/or effective treatment would be enough at this point.  Please Lord…………………………

My big boy is 5!!

My big boy turned 5 today and started kindergarten!!  I’m so proud of him.  He did so well getting on the school bus and going to school for the first time.  He got to bring cupcakes to his class for his birthday so he was extra excited about that! 

I cannot believe that I have a kindergartener!  Time just flies by so fast.  Sniff sniff!!

On the health front, I’m feeling pretty decent the last few days.  Not too bad really.  My legs are doing fairly well but my arms are now pretty weak.  I go to see my neuro tomorrow so we’ll see what he has to say.  I have been talking with a pulmonologist that I know well and he has a whole list of tests that he wants to do for all this shortness of breath.  He gave me a script for the first set of tests and says he wants to see me within 2-3 weeks in the office.  A good start at least!!!

Really paying for the party

Today I’m really paying for having the kids’ birthday party.  Each year we do a combo party since all 3 have their b-days just 4 days apart.  And since it’s a once a year thing we just throw a big BBQ.  It always happens to fall on hubby’s first day of cross country practice too so the majority of work falls to me.  Being the good mom that I try and be I just ignored my body yesterday and forged ahead with it all.  BIG MISTAKE!!!

The party turned out great but today I’m struggling.  I was asleep on the couch by about 8:30 pm last night and was so dead asleep that hubby left me there which he usually doesn’t do!!  Then I could barely drag myself up this morning despite the fact that the kids and hubby needed me.  Usually I get up and get breakfast going etc but today I could have cared less if anyone starved.  That isn’t me AT ALL.

My body feels just miserable today.  I feel like a big bowl of jello and like none of my muscles work.  And if this stinkin elephant doesn’t get off my chest so I can breathe I’m gonna lose it.  And that’s just when I’m sitting doing nothing.  When I get up and walk around it’s quite difficult to breathe.  If this goes on much longer this might be the first day I actually consider visiting the ER for the shortness of breath.  

And to top it all off my week of vacation from work is over.  I go back tonight and start my new job.  I used to work in a cardiac ICU where if it was quiet (which was about 50/50) I could at least sit down for short periods of time.  But now I’m a resource nurse, so this means I’ll be up and walking around for the entire 12 hours of my shift from 7pm to 7am!!!  Ahhhhhhhhhh.

Hopefully a good nap this afternoon will help.

And then hopefully a visit with my neuro this Thursday will help even more……………..

My babies are 3 today!!!

My twins are 3 today!!  I still call them my babies though it’s probably time to start dropping that line huh!!

I can hardly believe they are 3.  It seems like yesterday that I was being wheeled into my room after my c-section and seeing my hubby holding them and reality that I actually had TWO babies to take home setting in.  And then it seems like the day before that I was getting my older one out of bed and some voice inside my head told me to do a pregnancy test that morning even though we had been unsuccessfully trying for about 9 months at that point and I had all but given up on getting pregnant on my own again.

My life is so blessed.  I have a wonderful hubby and 3 wonderful children.  I only wanted 2 children.  You know, the whole I have 2 hands for 2 kids etc line…….  But then God blessed me with an extra and though it gets hectic at times (well most of the time!!!) I wouldn’t change it for the world. 

We are having a big BBQ for the 3 of them today as Benjamin’s b-day is this coming Wednesday.  Quite the busy week for us!

Here are some pics down memory lane………..

Now:

Jen at birth:

Sam at birth:

Happy stinking birthday to me!!

So yesterday was my birthday.  I’m 32 now!!  A major milestone huh!!  In all seriousness it was not a great day.  It started off with me feeling blah like usual.  But I was at least in an upbeat mood.  My husband and I were on our way to lunch for me (without the kids too!!!) when the daycare calls to say that Benjamin (my oldest) had just puked all over the place!!!  Uggh….so much for lunch.

Hubby was nice enough to go and pick him up so that I could go and get all the party supplies for the kids b-day party on Sat.  Then later in the afternoon I pick up the other two and by 6 ish Samuel is puking.  Jennifer had her turn around 9:30!!!  I decided right then that I am cancelling all holidays that have anything to do personally with me as I seem to remember cleaning up puke on Mother’s Day too!!!

On the medical side of things for me, I have had tons of blood work done in the last few days.  My muscle damage tests (CPK, LDH and liver enzymes) are all normal.  Today I had a sed rate, C-reactive protein and rheumatoid factor done to check for inflammation etc.  No results on them yet though.  Hopefully on Monday I’ll hear.  

Oh and my newest symptom is muscle pain.  I played tee ball with Ben the other day and today is the first day that my triceps in my arm don’t ache like mad.  I felt for 2 solid days as if I had swam the entire English channel!!!  

To answer some of Jana and Rachel’s comments:  no tensilon test.  I don’t think it is commonly done around here in the US anymore.  But I have an appt with my regular neuro on Thurs this week so I’ll ask him then.  As to the ice test….my eyelid does get droopy but not to the degree that that test would be possible.  I think if you go to the about me page there is a pic of me that has the droopy lid in it and that is about how bad it gets….maybe a tiny worse at times.  But never to the degree you are saying.  Thanks for the insight though and keep it coming!!

8/24:  Edited to add:  I went back and looked at the picture and it isn’t reflective of what my lid looks like when it’s droopy.  I picked the best pic of course!!  I’ll have to go back and find one and post it.  But it still doesn’t get droopy enough to do the ice test and it’s very unpredictable as to when it will get droopy.

Still no answers

I had my nerve conduction study and EMG yesterday and am still no closer to a diagnosis.  Also got the results of the anti-MUSK antibodies bloodwork which was negative.  This doesn’t mean I don’t have myasthenia gravis (MG) but is leaning towards that NOT being the diagnosis. 

The doc who did the nerve conduction and EMG was really cool and I liked him a lot.  He was just as frustrated as I was during the test as he said he could tell that there IS something wrong with me based on the amount of muscle weakness he could elicit during his physical exam but the test just didn’t show it.  He tried hard to get something to show up but nothing did.  This is good and bad.  Good in that I don’t really want to have anything wrong with me but bad in that obviously something IS wrong with me but we just cannot figure out what.  And until we figure out WHAT we cannot treat it.   The next step in the process is to have some more bloodwork done today to test if my muscles have any inflammation in them.  And then in 3 weeks I go back to the hospital I was at yesterday and have another test called a single fiber EMG.  This will be the final determining factor as to whether this is MG or something else.  The doc said if this one is negative then it is something else and the next step is a muscle biopsy. 

I’m pretty scared and frustrated at this point.  I mean I turn 32 tomorrow and I feel like I’m turning 72.  I can’t walk up one flight of stairs without having to stop and catch my breath and having my legs feel like jello.  I drive somewhere and try and get out of the car and it’s not easy to do b/c my legs don’t work right.  I try making my Goddaughter a cake and it takes me twice as long as it should b/c stirring food coloring into the frosting is nearly impossible b/c my arms are so weak.  And the longer I sit at this computer typing the more double my vision gets.  Those are just some examples too.  What is wrong with me?????  My husband says I’m just out of shape!!  But I don’t think being out of shape causes all of this.  Today my muscles actually hurt on top of being weak.  I feel like I just competed in some sort of triathalon or something.  Or that I did some sort of extremely strenuous activity and used muscles I didn’t know I had.  But I didn’t.    I’m over it!!!

But at least I got good news on the pap smear that I said about in the last post.  I have to have it repeated in 4 months but the cells themselves are fine.  I had early pre-cancerous HPV changes 10 or so years ago and this time it just showed that the HPV virus is active again.  So it could turn pre-cancerous again at any time.

Seriously, one thing at a time please!!

If you’ve been reading this blog for any length of time then you know the struggle I’ve been having with my body with these myasthenia symptoms.  I go for my EMG test on Tuesday to get or not get the diagnosis.  You’ve also seen that I’ve been for the most part pretty upbeat and accepting of this being my new reality.  

Well all that changed with a phone message on Friday evening.  I’m now pretty messed up.  The message was from my doctor’s office saying that I needed to call them on Monday as they needed to discuss some test results with me.  Now, this was NOT my neurologist who is handling my myasthenia symptoms.  This was my regular internist who I just had a physical with on Tues and the ONLY test I had was a pap smear.  

Now, normally I wouldn’t just jump to conclusions but I did have an abnormal pap about 10 years ago that turned out to be early pre-cancerous changes.  It resolved on it’s own and I have been fine ever since but now this phone call.  And again, I’m sure that things will be fine but it’s another process to go through.  I have one process (the testing and then possible start of treatment for the MG) to go through and now you can add in another.  

As you can guess I’m having a WHY ME????? day today.  All I did all day was yell at my husband and kids.  And I felt bad all day doing it but at the same time I couldn’t help it.  I’m tired of being strong.  I’m tired of doctor’s visits no matter who they are for.  I’m tired of flying to Cleveland (for DH’s heart), or driving to Boston (for DD’s stuff…see her blog), or taking DS to the cardiologist, or this one to this or that one to that, etc.  And now add in two more kinds of visits……for me.  Enough already!!!!  

Though I do have to say that I had a great conversation with my Amma Jackie and several of my other friends who remind me that the Lord doesn’t give us more than we can handle and when it seems as if He is then we call on Him and each other to help.  It’s funny…I called Amma to ask for some scriptures to help strengthen me and we chatted for awhile too.  At the end she told me how much *I* helped her with her recent journey (her husband died recently).  And about how my call reminded her how He calls on each of us to help each other.  Isn’t that cool!  So, I’m trying to see that He does have a plan for everything.  I just wish I could better understand His current path for me!!!

Isaiah 40:31

But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run , and not be weary ; and they shall walk , and not faint .

Psalms 57:1

Be merciful unto me, O God, be merciful unto me: for my soul trusteth in thee: yea, in the shadow of thy wings will I make my refuge , until these calamities be overpast .

A personal connection

Tonight I’m taking care of a patient with myasthenia gravis (MG).  I especially took her in my assignment to be able to talk to her about the disease and how it has affected her life etc.  She is very nice and has a kind heart so I shared with her my recent struggles and symptoms.  It’s been quite nice to make a personal connection.

At the same time it makes me a bit more nervous for my upcoming appointment.  The reason why is that she first asked me what my symptoms are like and responded with “Hmmm……..yup sound familiar.”  Uh-oh I’m thinking!!  Then a bit later she tells me that my eye rims are red and says that’s a symptom…….really???  Then a bit later asks me if my eyes ever flicker?  Yup.  And at this point I jokingly fuss at her to stop asking me such questions as she’s making me realize that this probably is my reality.  Then we both have a good laugh.

She goes on to tell me that while it is a burdeon it really isn’t that bad and like anything else it’s what you make of it.  Of course, she is 74 and retired and I’m almost 32 with a hubby, 3 young kids and a full time nursing job working night shift!!!!  But I do know that God put me on this path for a reason and while I don’t know that reason and may never, He does have a plan for me and if I let him lead me then I will be OK.  Sure, I’ll have bad days but I’ll have good days too.  And in the end I’m still #1 a wife, #2 a mom, and #3 a working nurse.  MG will have to take #4 spot.  I’ll just have to have His help with keeping it in that order.

On a positive note too I talked with one of our lung docs and told him what was going on and he is willing to take me on as a patient if MG is what I have.  Lung capacity is something that has to be closely watched and he knows enough about it to comfortably take care of that aspect for me.  That is wonderful news as he and I get along quite well and I will feel better knowing he is involved in my care should I need it.

All in all I’m doing ok.  I’m a bit depressed but I don’t think that’s all from this looming possibility of MG.  I have a ton going on right now and I think it’s just the combination of it all.  My daughter just had major surgery and we are weaning how thick the liquids she drinks (her blog is in my sidebar) and won’t know if the surgery was successful until Oct, tonight is my last night at my current job and then in 2 weeks I start a new one, my oldest is starting kindergarten in 2 weeks, and my husband goes back to being a high school teacher in 2 weeks after having the summer off.  So life is quite busy and stressful right now.  I just don’t have time for health issues of my own KWIM??? 

But, like I said……….I know with His help I can make it through this.  What other choice do I have right

Having a rough night

Been having a rough few days actually.  I had gone on vacation with my family and felt pretty good.  Though I did notice that I get tired pretty easily.  Even my husband, who doesn’t usually notice things like that, noticed.

Now I have a cold and it’s kicking my butt.  Summer colds are the worst anyway but this one really has been a gloomy one.  It takes not much to make me short of breath as heck. 

Tonight I came to work since it and tomorrow are my last two nights at this job before I start my new position.  How can I miss my last few nights with my current coworkers you know?  But I’m struggling.  Luckily it’s been slow.  I was sitting at the computer for a little while working on Jen’s blog and got up to go to the cafeteria to get some dinner and I could barely stand, never mind walk!!  Yikes!!  I limped my way there and got some dinner but I’m definitely in a bad way.  Not sure really how to describe it except to say that my legs just feel quite weak and as if they don’t work…..at all. 

Luckily my eyes aren’t bugging me too much tonite though.  That is the most annoying symptom that I have.  If you’ve never had double vision then consider yourself lucky as it is quite distressing to deal with.  Closing one eye makes the double vision go away but then your depth perception goes along with it. 

All in all I just feel kinda blah.  I’m just praying that I can get some answers soon……whatever they may be.  And then some sort of treatment.  I’m tired of being tired and weak.

I’m praying to God to lessen my burden on this path that He has me on.

Combining of blogs

I had said in my Hello World post that I had really considered whether I wanted to start another blog as I had several.  I’ve been doing some thinking and I decided to combine two of them.  This one and the one I was using as My Spiritual Journey.  I had started a blog on that because though I have always believed in God and have been a church goer I have only recently really given myself and my life over to Christ and become one with Him.  I was blogging on that so that my spiritual friends could keep up with my new journey.  Then I realized that I had a blog for this and a blog for that and a blog for another, etc.  But really it’s all the same me!!  (Though I plan to keep Jennifer’s separate with a link to it on here as that is really about her, and my nursing one separate too)

I started this blog to document my feelings and my health issues of late.  But then came to the realization that it is God who put me on this path and only He who can show me where it leads.  I must admit that at first I was a bit apprehensive to combine the two as I didn’t want those who don’t have the same beliefs that read this to think whatever they would think.  But then I decided hey whatever it’s MY blog and I’m gonna say how *I* feel.  And this is it!!!  So come along for the ride!!