Now I’m really confused

All this iron stuff is really confusing me.  I have my endocrinologist who is saying that my iron being so low is not good.  And that makes total sense to me.  You need iron to make blood etc.  So not having much cannot be good, right?  Plus I don’t feel good.  That is why I started this blog in the first place.  Because I had all these crazy symptoms:  fatigue, muscle weakness, shortness of breath with any exertion, difficulty swallowing.  And for those I had this HUGE work up as everyone thought I had myasthenia gravis.  But that was all negative and no one could figure out what was wrong with me.  Then the symptoms got better for a bit but then they have come back.  Not as bad but they are back.  Also back is the double vision.  It’s back with a vengeance along with the eye movement disorder that the eye doc had I think called superior oblique myokyma.  I had always thought the double vision was bad but the movement disorder is so much worse.  And they are here together making it double awful. 

My endocrinologist tells me based on my results that I need more iron but that she isn’t an iron expert and to call my primary doctor.  So I do and the short version of that story is that she tells me that since I’m not anemic and I’m a female who still gets my menses this level of iron deficiency is normal.  WHAT?????   Along with how I feel it’s normal???  Who do I believe?

So I scour the Internet and come across this article.  And it pretty much describes me and how I feel.  And it talks about how unrecognized this problem of latent iron deficiency is.  Latent meaning that you are iron deficient but NOT anemic.  So I call the primary doctor again and basically get the same response.  Take a multivitamin with iron if it will make you feel better but you aren’t anemic so you don’t need to worry.

So, now what do I do?  Ahhhhhhh! 

I have a diagnosis finally!

I had a follow up appointment with my endocrinologist today for my hyperthyroidism.  We were discussing how my symptoms had come back.  The double vision, shortness of breath with any exertion, muscle weakness, etc.  See this post for more on that.  Luckily it’s not nearly as bad as it was when I started this blog. 

During the appointment we talked about that I’m not anemic but that after I gave a unit of blood when my daughter had surgery back in July I never seemed to make it back.  I actually jokingly told her that!!  I had remembered that she had told me at my visit several weeks later that my counts had dropped a little and I had told her it was no big deal as I had given blood.  You should make that back in 6 weeks though and I never did.  At that point she asked if we had ever checked my iron levels. 

She thumbed thru some pages in the labs section of my chart and found that she had checked them.  Then she got quiet.  I knew it wouldn’t be good from there.  And it wasn’t………for two reasons:  1) they were checked about 6 months prior and 2) they were not good results.  Now let’s talk about each of those.

She was quite embarassed that these bad results had been sitting in my chart for so long.  She went on to try and quickly explain how it could happen etc.  She knew all that I had been thru with the massive work up and how horrible I had been feeling etc.  AND that I had never gotten an answer.  That doctor after doctor had basically told me that they could find nothing wrong.  You can imagine how she thought I would be feeling.  However, I am a nurse….I work in the medical field and understand how papers, results, labs, etc get misfiled everyday.  I totally understood.  And you also have to understand that not only is she my doctor but she is MY FRIEND.  We usually spend most of my appointments talking about our families or work.  Then in the last 5 minutes we cram the entire appointment in!!  I wouldn’t change this for the world.  She gives me the best care of any of my doctors.  For those of you still wondering HOW it happened it went like this………my thyroid labs come back the same day whereas the iron studies take longer.  All the labs sit in a pile awaiting her signature to be filed in my chart.  She signs them as they come in.  What most likely happened is that she signed the thyroid ones and then the iron ones came in.  Someone saw her signature and just filed them.  She never even saw the iron ones.  Happens in doctor’s offices everyday……….moral of the story……no news isn’t always good news!!! 

As to #2…the results:  My ferritin (the most accurate for gauging your iron stores) was 7.  That is quite low, severely low actually.  And it could account for all my symptoms that I’ve mentioned on this blog before.  All the symptoms that they were blaming on me possibly having myasthenia gravis.  Imagine that.  Something as simple as iron deficiency and I had the million dollar work up for myasthenia gravis!  My thyroid doc wantes me treated with iron right away but knows it isn’t her speciality she forwarded all this to my primary doctor.  I’m waiting on word from them as to what I do next.  I’m hoping some iron is in my future!!

Neurologist appointment update

I don’t think I ever updated about my most recent appointment with my neuro.  It was on Sept 30.  I had a sick kiddo at home and almost forgot the appt!!  Luckily I had programmed it into my phone for an hour before to alarm or I would have been a no show!!

Anyway, we went over all my results and he is pretty adamant that I don’t have MG.  They have all said that negative antibodies, negative RNS/EMG/SFEMG = a 95% chance that you don’t have MG.  

He was willing to go along with it being some kind of “viral syndrome” like the other docs have said.  They just love to blame things they don’t know on a virus.  Grrr!  I’d love for it to be that too but really I just want to feel better.

About how I’m feeling:  I was starting to feel better and I’m still better than I was at my most low with this but I’m not myself at all.  I’m still wanting to sleep as much as possible, I’ve had to wear my glasses the past few nights I’ve been working to shave off the double vision and the muscle weakness is still there just not as bad.  I get worn out so easily.  At least at this point it’s not so bad that I cannot do things with my kids like before so I guess I can live with it where it is.  It just would be nice to feel like myself again.  The SOB is also better but still there.  The inhalers the pulm gave me aren’t doing anything positive.  I used the rescue inhaler the other day when I was SOB and it helped a tad but then for the next 4 hours I felt horrible.  Jittery and anxious.  

I’m taking comfort in my Lord, who I know has me on this path for a reason.  I just wish He would show me why soon.  I got an email the other day with Saint Theresa’s prayer on it and it gives me comfort in this trying time.  This is it:  

Saint Theresa’s Prayer 

May today there be peace within. 

May you trust God that you are exactly where you 

are meant to be. 

May you not forget the infinite 

possibilities that are born of faith. 

May you use those gifts that you have received, 

and pass on the love that has been given to you. 

May you be content knowing you are a child of God.   

Let this presence settle into your bones, 

and allow your soul the freedom to sing, 

dance, praise and love. 

It is there for each and every one of us.

Results are in

The latest battery of testing is done and I have results:  

The single fiber EMG was completely normal.  According to the neurophysiologist that did it this definatively rules out MG along with the fact that my blood work for MG was normal and so was my regular EMG.  He had no other suggestions for what this could be either.  The only things he did have to say that was good was that a lot of “really bad things” have been ruled out so this should reassure me.  And that in his 20+ years of doing this he has seen quite few people come in with similar symptoms and have a totally negative work up like me.  And then one day the symptoms disappear as mysteriously as they appeared and they never do find out what it was.  

The CT scan of my chest thankfully showed that I have normal lung anatomy: no tumors, abnormal fluid, or inflammation, etc.  Wonderful, wonderful news!!  The only abnormality on the scan was that my thymus glad is larger than it should be.  This is a common finding in autoimmune disorders.  So, it may be related to my Grave’s or it may be related to all this that is going on.  My Grave’s is in remission so not sure if my thymus should still be enlarged from it or not.  Will have to ask my endocrinologist.

For now I’M DONE!!!!  No more tests.  I’ll just live with this for a little while longer and see what happens.  Maybe I’ll be one of those that it just mysteriously disappears for too.  I do see the pulm on Sept 26 and neuro on Sept 30 so I’ll ask them what they think and then go from there I guess.

Oh and not sure if I ever posted about my brain MRI but it was normal too.  So no MS!!!  Whoo hoo!

It’s all just so frustrating in the end.  I just want to know what’s wrong with me.  I can live with whatever it is but the not knowing is torture.  I was driving the other day on my way to the SFEMG listening to Alicia Keys and this short song came on and I about lost it as it so nicely describes where I am sometimes now.  It’s titled Prelude to a Kiss and here are the words:

Sometimes I feel like I don’t belong anywhere.

And it’s gonna take so long for me to get somewhere.

Sometimes I feel so heavy hearted but I can’t explain.

Because I’m so guarded

But that’s a lonely road to travel and a heavy load to bear.

And it’s a long long way to heaven but I gotta get there.

Can you send an angel?  Can you send me an angel to guide me?

Now don’t get me wrong….I’m nowhere near ready for heaven!!!  But I could use the angel’s guidance at this point!

Without wax and feeling some peace…finally

I wanted to introduce those that read my blog to my newest friend that I have met on the blogosphere.  His name is Pete Wilson and he’s the pastor at Cross Point Church in Nashville.  I’ve been following his blog for some time now and I wanted to introduce it to others.  It has quickly become a daily required read for me.  

The thing I like a lot about Pete and his blog titled Without Wax is that it really makes me think.  He asks a question daily at the end of his posts.  And he gets TONS of comments.  I’m lucky to get a few here and there but he gets anywhere from 30-90 a day!!!  And reading the comments is as fun as reading his posts as his commenters make you think too.  

I think my favorite part though is that Pete is quite down to earth.  Even though he is a pastor and is in charge of this huge church and of spreading His word at the same time Pete never hides the fact that he is a human just like the rest of us with human struggles and human sufferings.  He even asks for advice on how to get through his own hard times.  And with as huge as his church and blog community are he takes the time to make personal connections that are always well appreciated.

Go and check him out.  You can find him here.

On a more personal note…..I had my brain MRI yesterday.  It is to rule out multiple sclerosis (MS).  Have no idea how it went.  I do know it took longer than they said it would but you can read anything into that.  I should hear something next week.  

While in that loud clanking and banging machine I didn’t have much to do though so I had a nice conversation with God Himself.  And I gave all this up to Him.  This dreadful illness whatever it may be, and all the symptoms that go with it.  I told Him that He gave it to me and I knew that only He could either take it away or lead the doctors down the right path of discovery.  

I wish I could say that when I got up I had no further symptoms but, of course, that wasn’t the case!!  However, I can say that I’m finally feeling more at peace with things.  All the symptoms are the same but I’m at least less frustrated that they cannot come up with an answer yet.  I know that in time they will.  God has me on this path for His reasons and I’m going to try my hardest to no longer question them.  Not to say that I won’t have my moments of frustration but I’m trying at least!!!

Pulmonary Function Tests done

Had my pulmonary function tests done and the results are………………………………..you guessed it NORMAL.  The therapist said I have wonderful lungs even!!  Though my pulmonologist did say he thought they would be so I’m  not to terribly surprised at this one.  I just recalled his office about when I actually see him in the office but he did say the next step would be a CT of my chest and probably an ultrasound of my heart.  

As my lovely (she really is lovely, I’m not being sarcastic in this instance) SIL said, perhaps I should add psychiatrist to my medical team at this point.  I’m really starting to wonder……is there actually something going on in my body or am I just going looney tunes???????

A first for me

When all this muscle weakness got to the point it’s at now it was mostly my legs that bothered me.  I had days where I had trouble walking and climbing stairs are pretty much a thing of the past except the ones I have to do in my house.  The other symptoms are pretty mild although somewhat annoying.  Those being the double vision and difficulty swallowing.  Then there is the SOB which we won’t even talk about in this post.

But over the past week or so a new area of muscle weakness has cropped up.  My forarms.  It started out pretty mild but has been building to the point where I can no longer ignore it.  They get worn out typing.  Making my kids’ b-day cakes was hard.  Making anything that has to be stirred is now nearly impossible.

Are you wondering where the “first for me” is??  Tonite I’m in the shower getting ready for work and washing my hair.  Washing went fine.  Then onto conditioner.  OK so far until I go to rinse out the conditioner and realize that my arms are now on fire!!!  I can barely move them at this point.  Ugggh.  I get out of the shower and here comes the first…………..I had to have my hubby towel dry my hair………sniff sniff.  I’m 32 and I couldn’t dry my own hair.  How freakin sad is that.  I’m so done with this. 

False Hope

I just had the last 4 nights off and while the first one off is always a recovery day and kinda bad the second one is usually pretty good.  Probably because I sleep about 12 hours the night before to catch up!!  But then I’m so rested that next day that I feel great.  Unfortunately though it gives a sense of false hope.  

This week that day was Saturday when I felt great for the first half of the day.  My body was working great.  I could climb the stairs and not be SOB etc.  So, this idea edged itself into my mind that maybe this was some sort of weird virus and I was finally getting over it.  Then hubby decides that since the weather was beautiful and it was a long weekend we should do something as a family.  I feel great so I go along with this great idea.  Are you sensing what’s coming next????

We go somewhere that involves being outside and LOTS of walking.  BAD IDEA.  I do well for about the first 1 1/2 hours and then it was like I hit a brick wall.  Suddenly my legs are like jello and then about 30 min later the SOB strikes.  That’s about the same time that my 3yo daughter decided that she is also tired and wants “uppy”.  And, of course, Daddy isn’t good enough and only Mommy can do the uppy.  It all just goes downhill from there.  Luckily we had already eaten lunch so we pack up and leave go and get some ice cream and go home for the day.  

Tomorrow morning is my pulmonary function tests.  The next step in getting my diagnosis hopefully.

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!!!