Quick biopsy update and new plans

Just had my 1 month follow from the LEEP and I am currently cervical dysplasia free!!  Yipee!  Next pap smear in 6 months.

At this appointment we also talked more seriously (we have been talking about it before now but the cervical stuff took precidence) about my iron deficiency and it’s symptoms etc (see this post) and how difficult life has gotten since having it.  So the planning has started for me to have a uterine cryoablation done.  I am one of those people who bleed very heavily every month so no matter how much iron I eat or take I just don’t make it up.  I’m in the middle of my 3 months of perscription therapy but not feeling any better yet.  The way this has to be planned I won’t be able to have it done until my 3 months of iron is done and my levels are rechecked anyway but he is confident that I won’t be any higher.  He feels this is my best option to a)get better and b) prevent it from happening again.

I’ll update more as it gets closer.

LEEP procedure

The biopsy results came back (see this post) and I have CIN 2.  This bought me a LEEP procedure.   It wasn’t  much different from my prospective than the colposcopy really.  Except that the cervical numbing  agent came in the form of a shot in the cervix instead of a spray…..OUCH!!!

The whole thing was pretty funny actually.  My doctor has a pretty dry sense of humor and usually also just tells it like it is.  For this reason we haven’t always gotten along so well.  In the past, he’s pissed me off more than once and now that I’m done having kids I had actually left him to have my primary (who is also women’s health) just do all my annual girlie stuff.  Let me tell you how much ribbing I’ve gotten for that!!  But lately we are getting along quite well.  We have finally come into a place where our personalities are meshing well.

So, here I am on the table for the second time this month awaiting a somewhat unpleasant procedure that could have potentially bad news.  This time anticipating a shot in the cervix so a bit more nervous.  He and I are chatting a little as he is preparing things and then the nurse and I start talking.  I can’t even remember what she and I are talking about just that I am paying particular attention to her.  All the sudden I get this HUGE pinch down there!!  I whip my head around to him and say “what the f? Could you have at least warned me?”  He starts laughing and says “well I figued you were so attentitive to your conversation you wouldn’t even notice.”  As he’s saying that he sticks me again!!!  I yell at him again and ask if that’s all the pain he’s gonna cause me and he says yes but that at anytime I should start feeling tachycardic (my heart would start racing).  It had about 10 seconds before he said it.  So I roll my eyes I tell him that he’s killing me!!  He just laughs.

Then I’m all numb and it’s time for him to do the actual LEEP procedure.  It uses this tiny knife with a loop at the end. Then they pass electric current thru it to cut out the abnormal areas.  They try and get all the abnormal areas out so that your are free of precancerous tissue.  It’s then sent to the lab to be analyzed to make sure they got it all.

Well this is my time for payback!!  I’m totally numb down there but he doesn’t need to know that!!!  Tee hee hee.  He goes in with the knife and starts cutting.   As soon as he does I yell “Ouch”!!  He jumps back and says “What happened” and I innocently say “nothing I’m fine but I got you didn’t I”!!!  The nurse about fell on the floor laughing.  She could barely contain herself.  Neither could I!  He didn’t think it was quite so funny since it was at his expense!  But I then said now we are even for not warning me about the shot.  He agreed and we moved on with the nurse and I still chuckling!!

He cut out my two areas (though made sure to show me that there were 3 pieces of tissue in the jar instead of 2 because of my little joke at which point I laughed again!!) and results should be in in a week.  Though I probably won’t get them until my next appointment in a month when I see him again to make sure all is healing well up there.

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!!

Colposcopy time

If you remember from this post or this post I had an abnormal Pap smear.  The next step was to have another one in a few months.  Well that one was even more abnormal.  So here I am just after having a colposcopy.  This is where the GYN goes up with a microscope and looks for the abnormal areas and takes as much as (s)he can out for biopsy.  I had 2 such areas.  Results should be back in about a week.

Spinal Headache & Blood Patch

That spinal tap was not so great.  Not only did it not feel good when it was being done but I ended up with a spinal headache just after trick or treating on Halloween evening.   It was awful.

The pounding in my head was so intense.  I could do nothing but lie flat.  If I did anything else the pain was so severe that all I could do was cry and hold my head.  So off to the hospital I went again.

To try and not have another invasive procedure done I opted first to try the caffeine infusion.  This involved having IV caffeine over several hours to see if it would get rid of the headache.  I should have known this wouldn’t work for me since I always get the weird stuff!!  But it was at least worth a try.  Next step, calling the anesthesiologist for a blood patch.  This involves him (or her) drawing blood from your arm and injecting it into your spinal canal to seal off the hole from the original spinal tap.  This hole allows spinal fluid to leak out giving the dreadfully painful spinal headache.  

Luckily my favorite anesthesiologist was on that night, but unluckily he was just starting a C-section.  So I had at least another hour to wait.  The wonderful ER doc at that point talked me into some pain medication and relief started!!  Prior to that I wouldn’t take anything because I needed to know if the caffeine infusion was working.  Needless to say the blood patch was not a pleasant experience but once it was done my head felt like mine again!!

My lower back is still a bit sore and apparently it will be for a few days.  This virus (whatever it is) is kicking my butt!!!   I’ll be glad when it has run it’s course!!

It’s not meningitis!!

It’s been awhile since I’ve blogged mostly because I’ve been sick for 6 days now.  And really it’s been almost 3 weeks in total.  I had a bug for a few days where I had a fever, chills, headache and muscle aches then got better from that but coughed like crazy for about a week.  Figured it was just the bronchitis that the kids had.  Got better and moved on……..or so I thought!

Then my Mom came to visit for a few days and we had a great time so no blogging then either.  

The day after she left I awoke again with the same symptoms:  fever, chills, headache, muscle aches.  This time much worse though.  Today was the 6th day of it and this morning I woke with a very stiff neck that I could hardly move.  So off to the ER for me.  

There they did some blood work and a CT scan of my head which were fine.  The next recommendation was a spinal tap which I wasn’t real fond of but being a nurse I knew I had meningitis symptoms and it was necessary.  It wasn’t the most pleasant thing I have done but luckily it was negative too meaning I don’t have meningitis!!  Yipee!!

Now I’m home recovering and hoping that this nasty virus they say I have will quickly pass and I can get back to myself soon.

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.

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!

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.