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.

Pulmonologist visit

Had my office visit with the pulm today.  It was quite nice as he had cancelled all but myself and 2 other patients so we had plenty of time to chat.  I know him quite well from work too so that helps a ton.  He had lots of good things to say.

We went over all the testing I have had up to this point.  My pulm function tests are fine and my chest CT is fine other than some mild thymus enlargement.  His next questions were how bad my SOB is and how much it impacts my life at this point.  Thankfully, it is getting better.  A month ago it was at it’s worst.  Now all the same symptoms are still there but much less severe.  However, he did say that they are still abnormal for someone my age who isn’t grossly overweight.  (I’m carrying an extra 5-10 lbs only)  

From his perspective the next tests are an exercise bike test and an echocardiogram.  The bike test will give an idea of both pulm and heart exercise tolerance and will tell generally which system is causing the SOB.  It will also tell if it’s just that I’m hugely out of shape!!!  Yikes!!  The problem with the test is that it isn’t real specific as to a diagnosis just a lot of maybes.  But it at least points to which  system.  The echo will show heart structures and whether they are abnormal at all.  We also talked about some more invasive testing but both agreed that since my symptoms are slowly getting better nothing more invasive is indicated at this point.

The other thing we are doing is what’s called a “treatment trial”.  It will help to rule out if this is atypical asthma.  For two weeks I’m going to do advair (an inhaled steroid) twice daily and then albuterol (a bronchodilator) as needed for the SOB.  If it helps then it’s a lung issue like asthma and I stay on them.  If not then back to the drawing board.

I see the neuro next on the 30th.

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!

Upcoming tests

My upcoming schedule is:  

Single fiber EMG on Thursday 9/18 (will be done by a muscular dystrophy specialist)

High resolution chest CT on 9/19

Appt with pulmonologist on 9/26

Hopefully at least one of these will be able to shed some light on what is going on with me.  I’m ready for a diagnosis.  Bad or good, I’m ready.  Just give it to me that way I can get it treated and move on.

I’ll update when I have more info.  Thanks for following along for the ride and feel free to add comments galore!

A sign sent

After reading some of the heavy topics on Without Wax, a blog I read daily, I knew I needed to go and visit the “God store” as I call it.  It is really just Cornerstone Bookstore, a Christian bookstore.  I was feeling the call to learn to be better at prayer so off I went to get a book on how to be better at it.  

In a previous post I had talked about God sending signs and about how I thought that was silly before I really gave my life over to Him.  Then once I did hand my life over, I really saw what people meant and really started noticing the signs He does send me.  Today He sent me another one.  

I had gone to the store just to get a book on praying like I had said but then went over to the section on topic prayer books.  Not intending to buy one (figuring why overwhelm myself with too much at one) I was just thumbing through one.  It is titled the Jesus Person Pocket Promise Book.  It is broken into 3 sections on God’s promises:  1. for your spiritual needs, 2. for your personal needs, and 3. for your future needs.  I didn’t really look too much at the chapters but was really just flipping through it and it opened to the page titled Is sickness a problem?  and gives 17 verses where God talks about being sick in the Bible.  The key verse says: The prayer of faith shall save the sick, and the Lord shall raise him up.  James 5:15

But the one that really affected me was:   Each time he said, “No. But I am with you; that is all you need. My power shows up best in weak people.”  Now I am glad to boast about how weak I am; I am glad to be a living demonstration of Christ’s power, instead of showing off my own power and abilities.  II Corinthians 12:9 

Wow. How powerful is it that I turned right to that page?  I bought that book too figuring I’d read it more when I got home.  When I did get home I tried to find that page again by looking in the table of contents.   I couldn’t find it.  So, I start flipping pages and I immediately open the book to it again!

Having just given this journey of sickness up to Him it was pretty neat to have been given this sign from Him.  Obviously it was the right thing to do.  I keep saying that He has me on this path for a reason and I still know He does.  I still don’t know what that reason is but there is one there.

Blessings and Peace

Just when I was starting to think…..

Just when I was starting to think that maybe this was getting better I had a bad night again last night.  My leg weakness had been getting progressively better and most of my weakness had been limited to my arms.  I’m now having trouble doing things like washing my hair, stirring things, typing long things, and writing for long periods.  Some may say that if it’s moved to my arms that would be worse not better, but having my legs not be so weak was better in my book.

Then yesterday afternoon I wake from my pre-work nap and my legs are hardly working.  And it just got worse as the night went on.  I was so fatigued too.  It was a hard night.  Luckily work was pretty slow.  My shortness of breath was pretty mild but I think that’s because I was moving so slow all night!!

Only 8 more days until my single fiber EMG.  I’m expecting it to be negative for MG too but the doctor that will be doing it I haven’t seen yet.  I’m anxious to see him as he is a muscular dystrophy specialist and my neuro is hoping he will have some insight for me.

Eye appointment

Yesterday I had my next eye appointment with the neuro-ophtamologist.  I had seen him 4 months ago when the double vision started up again.  I had also seen him in 1999 when I had my first bout of double vision.  He had some good things to say.

First off, he says he would bet money on the fact that I don’t have MG.  He also said that he was literally jumping up and down saying that I don’t have it.  Then he did say that MG is “the great humbler” though meaning that it is hard to diagnose and it makes doctors wrong all the time.  The reasons he gave for saying that he doesn’t think I have it are that when he did some eye fatiguing exercises he could not elicit any double vision or eye lid drooping.  He said that in MG those exercises almost always work if you have active eye/vision symptoms.  He said another reason that he feels this way is that the way my eyes measure on their tests that they use for double vision is the same at every visit going back to 1999.  This would be unusual for MG.  They really should have worsened over time especially now that I have more generalized symptoms.  

I also told him that since I saw him 4 months ago I have noticed that only my right eye will flicker at times making my vision in that eye blurry when it is happening.  He asked me to describe really well what I mean by flickering and I told him that when it’s happening everything out of that eye will jump all around mostly up and down but also somewhat circular.  And it ALWAYS happens only in the right eye.  This leads him to believe that I have a condition called superior oblique myokymia.  It is a rare neurological movement disorder that only involves the eye and results in the flickering and possibly the double vision.  Yipee!!!  Finally a possible diagnosis for something!!!  It, unfortunately doesn’t explain any of the rest of my symptoms.  But it seems the rest of the symptoms could be unrelated to my eyes.  This could be an important diagnostic fact.  I am to start on some daily eye drops and see if they help.  If they do then I probably have it and there are oral medications to control it.  

He is very interested to hear what they ever find with the rest of my symptoms.  He wants me to email him when/if they ever figure it out.  I’m also to email him the pictures of me with my droopy eyelid so that he can see it for himself, as dummy me forgot to bring the pictures.  And I see him again in 6 months.

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???????