Tuesday, January 12, 2010

My new family practice doctor...

Before leaving the dermatologist's office, he told me he would be contacting my family dr. to discuss the diagnosis. I left the office and went back to work.

I had been back to work for a few minutes when I received a phone call from my family dr. She said she had just gotten off the phone with the dermatologist and that we needed to get an appointment scheduled with a rheumatologist as soon as possible. She asked if I had a preference, which I did not. I didn't know any rheumatologists so I was trusting her judgment.

About another hour later my family dr. called back. She told me she had contacted the rheumatologist and scheduled my appointment and gave me the information. I was to see the rheumatologist in about 2 weeks.

She paused for a moment then said, "Do you realize this is a pretty serious condition?"

I said, "Yes. I've read about it on the internet so I know it can be serious."

Family dr.: "I will need to see you again prior to your visit to Dr. (rheumatologist). I want to discuss this more and we have some other things we need to do."

I was back in my family dr.'s office within a week. The reason she wanted to see me face to face was to tell me something I had not learned from the internet. She informed me that DM can sometimes be caused by an undiagnosed cancer and I needed to be screened pretty thoroughly to rule out cancer as a cause. I was taken back a little by this but I had to make sure this was not the case.

We scheduled numerous tests over the next few weeks. I was poked, prodded and scanned. In the end, I did not have cancer. What a relief. I don't know if I could have handled a double whammy.

One thing I learned very early in this battle was how important it is to have doctors on your team that you trust and you feel really care about you and your recovery.

This was a doctor I had seen for the first time ever about6 or 7 weeks prior. The fact that she personally scheduled my appointment and personally called me back went a very long way to building what would become a strong bond.

She showed her concern for ME. I wasn't a file she looked at when I came to her office. She knew me and cared.

Now on to the business of fighting the DM. Next stop, rheumatologist.

Saturday, January 9, 2010

Med Students *sigh*

After the dermatologist told me he believed I had DM, he said I had a CPK (muscle enzyme) result of 1400. The normal range is 22 to 198. This indicated that my muscles were inflamed and being damaged and, combined with my symptoms and other blood work, led the doctor to his conclusion of DM.

After we finished our discussion, he told me DM is pretty rare and for this reason would like to know if I would allow a couple of med students in to ask questions. I agreed and a few minutes later, there were two young med students in the exam room with us.

The doctor showed them my chart and test results. After they discussed it briefly he asked them if they had any questions for me. The doctor had not given either of them my diagnosis at this point and was trying to get them to form their own opinions of what was wrong.

One of the students paused very thoughtfully, looked at the chart again and asked, "Did you experience any crushing chest pain on or about (I don't remember the date but it was the date the blood work was done 1 month prior)?"

I responded, "No, I did not have any chest pain."

Student: "At least not that you recall?"

Me: "I think I would recall 'crushing' chest pain. I would most likely have gone to the ER."

I could see the doctor trying not to chuckle at the exchange, but I wondered where on earth that question came from.

The doctor told the students that I have DM and explained to them why my CPK level was elevated and then it dawned on me why the student asked the question. The CPK test is also used when there is a suspected heart attack. The heart muscle releases the same enzyme when damaged during a heart attack.

I actually almost laughed a little myself thinking that the med student was diagnosing me with a heart attack a month after the fact. Oh well, I think they both learned something that day.

I had many more med students in my future, but right now I needed to take in the diagnosis and find out what came next.

Thursday, January 7, 2010

You're not weak enough...

After my new doctor dropped the bomb that she thought I had Lupus, she prescribed 40mg per day of Prednisone. She also scheduled an appointment with a dermatologist for a skin biopsy that would confirm whether or not I had Lupus.

The Prednisone helped tremendously. By the time I saw the dermatologist, my legs were almost pain free and my rash, although not gone completely, was much better.

The dermatologist asked me to go through all the symptoms again. He checked the rash on my face and on my hips. He then did a quick strength test of each arm and each leg. I was able to push his hand back quite easily with each limb.

The doctor said, "I thought you may have something called 'dermatomyositis', but you are not weak enough so I don't think that's what you have." I had never heard of this disease before, but I committed the name to memory.

Since the first time I called my original doctor's office for an appointment, I had been scouring the internet trying to diagnose myself. My sister has Celiac Disease (auto-immune gluten intolerance) so that was my first target. What I found was that my symptoms fit about 100 different diseases. I would research this "dermatomyositis" when I got home from my appointment.

The doctor took the skin biopsy from my hip and wrote out an order for what appeared to be 50 different blood tests. He then told me that Prednisone can be a very nasty drug if you are on it very long and he wanted to taper me off. I don't think he would have done this had I appeared "weak enough" to him. I was scheduled for a return visit in a month and left to have blood drawn.

I'm not sure what exactly he ordered, but I know at least a CPK (Creatine Phosphokinase or muscle enzyme), SED rate (erythrocyte sedimentation rate) and an ANA (antinuclear antibody). The SED and ANA are commonly used when trying to determine an auto-immune diagnosis and the CPK because of my muscle involvement. I would have to wait a month for those results.

After going home, I followed the schedule and tapered down my Prednisone. When I did this, my symptoms came back with a vengeance.

The rash now covered my entire face, neck and scalp. It was so red in spots it looked purple. I had red and purple patches over my knuckles, elbows and knees. My thighs were so painful, I did not want to be touched. I had trouble standing from a seated position. I could barely hold my arms above my head.

I did my research on "dermatomyositis", and I was able to place a check mark next to every symptom. I knew this was it and I knew the doctor would see it when I returned.

I went back to the dermatologist in this condition. Once he saw me and did another quick strength test, he said it was very obvious to him now that I did in fact have dermatomyositis (DM).

After the exam, the doctor went over my blood work which confirmed the diagnosis.

I stated in a previous post that I was "lucky" to have the unsightly rash. The reason I say this is that DM is a rare disease. There are many people in the medical field who have a) never heard of it or b) have heard of it but may never see a case in their entire career.

The rash was a red flag to this dermatologist. The fact that he had both heard of this disease and that he made the connection due to my rash make me a very lucky person. I was diagnosed early when many people may have gone a year or longer mis or undiagnosed causing permanent muscle damage and in some cases death.

Because this is a rare disease, every doctor I went to wanted every intern and med student in their grasp to meet with me. This was a great learning experience for them and I was more than willing to let them have exposure to this rare disease. If this helped them diagnose someone early on , it was well worth the few minutes I spent with each of them.

My first experience with the "newbies" was this particular visit to the dermatologist. But that will wait until next time.

Wednesday, January 6, 2010

What is going on?

We all experience little things with our health or our bodies that we either completely ignore or rationalize in our mind that nothing is wrong. Looking back, I had little signs that something might be wrong up to a year prior to seeking medical attention. I never realized these little things went together in anyway and they were so minor, seeing a doctor never crossed my mind.

It all seemed to begin within a few months of a very nasty virus that kept me off work for a week. The virus hit in February.

A few months later, I noticed that my lips were chapped all the time and it was summer. This was very odd for me, but I never thought it was a medical issue.

Within the next few months, I noticed that my cheeks, chin and nose would turn red at the same time everyday. Very strange, but not a real problem. As time went by, the redness would come and go more frequently. I also noticed itchy, light purple patches on my hips.

I started to think I had developed a food or detergent allergy. I changed soap brands and began eliminating food items to see if the problems would go away, but they just continued to get worse.

The first time I considered going to the doctor was when I began to notice issues with my muscles.

I had been working out for about an hour almost every day for several months when I suddenly began to experience extreme muscle soreness in my thighs. I should not have been sore at all at this point.

My doctor was out of town when I called to schedule an appointment so I had to see a different doctor in the practice. By this time, I had muscle pain and the rash had become almost constant. The rash had also spread down my neck, onto my scalp and onto my eyelids.

The "substitute" doctor assured me I was suffering from a seasonal contact allergy and prescribed a topical steroid for the rash but nothing for the pain. The steroid ointment didn't do much to alleviate the rash and nothing for the pain.

After a few weeks, I called the doctor's office again and again was unable to see my doctor. This time I saw a different doctor from the first visit. He also assured me this was an allergy issue. His solution was two steroid injections and a steroid dose pack.

Within a few days I felt great. He was right! It is an allergy!

After the injections and the dose pack wore off, all the symptoms returned.

Frustrated with my doctor's office and the fact I could not even see my own doctor, I scheduled an appointment with my mom's doctor. I was scheduled to see the Nurse Practitioner since I was a new patient.

My first decision prior to this appointment was to think about every minuscule little thing going on, no matter how minor it seemed, and tell the Nurse Practitioner.

I don't even remember everything I rattled off other than the rash, the muscle pain and my tongue feeling like it was coated with something. I just know it was a long list and when I was done, the Nurse excused herself for a moment.

Within 30 seconds, the doctor was in the room. She went back through my extensive list and checked me over pretty thoroughly. Once she finished, she asked, "Have you ever heard of Lupus?"

I had and for the first time I was scared.

Sunday, January 3, 2010

How would you react?

Have you ever wondered how you would react if you were given a diagnosis that would change your life? I never gave it a thought until it happened.

My diagnosis brought a sense of relief. I suffered for 3 months prior to diagnosis so I was relieved to finally have a name to attach to my symptoms.

So you may wonder, "What is myositis? ". Myo refers to muscles and itis is inflammation so myositis is literally inflammation of he muscles. Muscle inflammation can have many causes and is normally only temporary, but there are a group of inflammatory myopathies that are believed to be auto-immune in nature.

My specific diagnosis is dermatomyositis. Derma refers to skin, so in addition to muscle inflammation, I have skin involvement. I had patches of dusky pink and purple skin over several joints and the "butterfly rash" that is commonly seen with Lupus and other auto-immune diseases.

The rash was unsightly, but I was very lucky to have it. I'll explain in my next post.