Musings of a Medical Zebra

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Archive for the ‘After Diagnosis – More Symptoms, Complications, Etc.’ Category

Iron Infusions

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July 19th, 2012 Posted 5:10 pm

I found this post in my drafts. It was written on 9/15/2011, but apparently I never got around to posting it. So, here it is…

Over the past couple of months I’ve received seven iron infusions. My ferritin and iron levels were very low. I do not tolerate oral iron, so IV iron was my only option. Luckily I am not scared of needles and I’m an easy stick because I had to get a new IV each week. The first two forms of iron caused adverse reactions. The reaction I had to the second form was delayed by several hours. It caused my hematologist enough concern that he requested  I see him the next day.

I wasn’t a stranger to the problem causing iron.  I was infused with it three times — one infusion per week for three weeks. Everything seemed fine until  four hours after receiving the third infusion. At this point, I began to itch.

At first, I didn’t think much of it. When the itching woke me up — this was roughly 9 hours after receiving the infusion — I decided to look in the mirror. My chest and back were mostly covered with a rash. It hadn’t dawned on me what was occurring, so I went back to bed. I managed to fall asleep . I woke up again, due to itching, around 7am. I got out of bed for the second time to look in the mirror. This time, my eyelids were quite swollen, as were my arms and legs. I loaded up on benedryl, and called my hematologist a couple hours later. He requested that I see him. By the time I arrived at his office — the next morning — the rash and swelling were gone.

Making Progress


May 9th, 2011 Posted 6:29 pm

I have been seeing a new doctor in Chesterfield since March. Over the winter, I suddenly gained 15 pounds. I knew my diet wasn’t the problem, but I wasn’t sure what the problem actually was — my internist wasn’t sure either.

I found out about  my newest doctor through word of mouth. He had helped a fellow EDSer with sudden weight gain. Her situation sounded very similar to mine. I decided to make an appointment.

I am being treated for a number of health issues that he diagnosed via blood and urine tests. Apparently, the weight I had gained was fluid. The treatment I am receiving has enabled me to lose the fluid — apparently I have been retaining fluid for years, it has only recently gotten worse — and gain muscle over the past seven weeks. My doctor is happy with the progress I have made thus far, and so am I. I will continue to improve as the weeks pass. All the fluid I have gained recently and the fluid I have been carrying around for years will be gone — hopefully by the end of June.

The biggest relief for me is that my heart has improved. The fluid retention made my clicking heart valve even louder. As the fluid has left my body, the click has gotten quieter. 🙂 More details to follow at a later date…


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February 1st, 2011 Posted 11:23 am

Tired — that word sums up the last several months. Fortunately, I have a new sleep specialist. Not only is he a great doctor and a nice guy, but he also has an interest in EDS. At my first appointment, we spent 20-30 minutes just talking about EDS — the types and their manifestations.

When he was in medical school, EDS was still classified using Roman Numerals. For him, Classical EDS was split into two types — EDS Type I and EDS Type II. Now it’s one type and called Classical EDS or cEDS. Similarly, Hypermobility EDS was EDS Type III and Vascular EDS was EDS Type IV. They are now hEDS and vEDS, respectively.

Of course we didn’t just talk about EDS. The bulk of my time with him was spent learning about the various drugs that can be used to help me sleep, and those that can be used to keep me awake. Unlike my previous sleep specialist, my current doctor understands the most important reason for me to remain alert during the day  — so that I can drive, thus maintaining a certain level independence. 🙂

Currently, I’m taking a drug to keep me awake during the day and a couple drugs to help me to sleep at night. Though I still have a few nights a month where I am only able to sleep for a couple hours in a row, I would say that my ability to stay asleep has drastically improved. My level of alertness during the day has made some improvements as well, but not in proportion to my sleep. I still spend about half the week too tired to make it through the entire day without a 2-3 hour nap.

I meet with my sleep specialist again in February.  Perhaps he will have more suggestions, which will lead to further improvements. I will keep you posted. 🙂

Farewell to the Sleep Specialist

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April 21st, 2010 Posted 12:06 pm

After a bit of a discussion, my sleep specialist prescribed Provigil at my last visit. I started with a 100mg dose. It helps for a few hours and then stops working. He bumped me up to 200mg and it doesn’t do much more — just makes me jittery. I called him to mention the jittery feeling from the 200mg dose and to let him know that it doesn’t do much more than the 100mg dose. His nurse returned my phone call this morning.

My sleep specialist says that his hands are tied until my pain and stomach problems are under control.  He said when I can sleep through the night, he can help me. Until then, there isn’t anything he can do. *sigh*

I explained to him at my last visit that I have a gastroenterologist and a pain specialist. The gastroenterologist has not been able to fix my stomach problems and my pain specialist will not be able to make my pain go away entirely. I thought the sleep specialist understood that, but apparently not.

I have a follow-up with my internist in a few weeks. I will talk to him about this and see what he can do. I see no reason to meet with the sleep specialist again.


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December 31st, 2009 Posted 7:28 pm

I have been so tired these past few days that I have barely been able to stay awake. This weekend we will be traveling a couple hours from here to see my husband’s family. I am hoping I will be able to stay awake long enough to visit. We’ll see.

Next week I meet with my pulmonologist to talk about the results of my sleep study. I cannot wait.

I will be back…

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November 11th, 2009 Posted 12:26 am

soon. I haven’t been feeling well recently.  As a result, I’ve been doing a very poor job of keeping up with this blog. I will try to post an update in the next few days. Hope to see you then. 🙂



October 31st, 2009 Posted 9:36 pm

I’m exhausted.


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September 9th, 2009 Posted 8:24 pm

Much has happened since I last updated this. I went to Cincinnati to see an EDS specialist; I have a cardiologist; I started aquatic therapy; I have a copy of Dragon Naturally Speaking; I made two pies; Danny mowed the yard at least once; we visited our families twice; I ordered a couple pairs of shoes from; and we’re awaiting a new dining room table from Pottery Barn.

I think I am most excited about the new table. It will be so nice to have enough room to seat more than four people. I am certain that Martha would be pleased as well. 🙂

Next to the table, starting aquatic therapy is relatively high on the list of exciting things since my last post.  I find it exciting because it’s  an opportunity to get stronger, and relieve some pain in the process.  Unfortunately, it’s going to take a fair amount of time before I feel some pain relief. While I’m excited about it on one hand, it’s hard for me to stay motivated on the other.  This is unusual for me. Typically I’m highly motivated, even when the task doesn’t directly benefit me.

In this particular case, the task — therapy — seems to be having a negative effect. I realize this is likely temporary, but the pain in my back has increased to a level I’d call severe.  I just want it to go away, as it is stressful and exhausting. Regardless of the pain it causes and/or my level of motivation, I will stick with it. I can’t be sure of its effectiveness otherwise. Wish me luck. 🙂


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July 17th, 2009 Posted 10:22 pm

I was released from occupational therapy today. I wish I had been released because I made significant progress — or any progress for that matter. My hands are still quite painful — I’ve lost most of the muscle in them (atrophy). I  have tendonitis in my wrists, forearms, and my right shoulder. I’m going to continue with my exercises.  Hopefully, with time, I will make some progress.

In the next couple of days, my TENS will arrive. It should help me to deal with the pain — in my hands and elsewhere in my body. Yay!! 🙂

E Day

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March 6th, 2009 Posted 8:09 pm

Today I had an upper endoscopy. If you’ve read some of my previous posts, you already know that I have stomach problems.  I’m nauseous most of the time. I vomit off an on, for hours at a time, and my stomach hurts more often than not. My gastroenterologist decided to do another endoscopy. The last one I had was three years ago.

Today’s endoscopy yielded similar results.  My sliding hernia is still there, and my lower esophageal sphincter was still too floppy. The only thing different was the color of my stomach lining. This time it was red. My doctor took several biopsies of my stomach. He did that last time too. This time he biopsied my small intestine as well. The results of that stuff will come back in a few weeks. He expects everything to be fine. I seen him again on the 30th to discuss what to do next. He thinks the problem could be neurological, but said he might recommend another pH test — one that would tell him if I’m having reflux that’s not coming from my stomach (bile reflux). I see my internist on the 23rd to discuss my stomach as well. I suppose I’ll have more news at a later date.  For now, my stomach is unhappy about accepting food and I’m fairly nauesous, but otherwise okay.