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! 

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.