Highs -n- Lows Living with the Disease

Monday, April 29th
 
Had a very difficult day today at the U of M clinic...MDA clinic

Not sure what to pray for...do I pray that they find cancer...after the cancer is treated the symptoms of DM could go away???  Do I have DM or is it the other rare disease the Dr was telling us about...
So many more questions...waiting to find answers...????

My new doctor, Georgios Emmanuel Manousakis MD told me the disease is not under control yet and it is affecting my muscles in my neck, arms, hands, legs, feet and hips...

He mentioned that when I thought I had the flu back in October and November, it could have been a reaction to the medicine I was taking...

He told us about another rare illness that resembles DM that I may have instead of DM...he wants to make sure I get the correct diagnosis...

I had several tubes of blood drawn, PFT test and other lung tests...he is also doing additional test to search for cancer...he wants to make sure nothing is missed...he ordered CT scan of my chest, abdomen, pelvis...

Tomorrow I go back in and have a EMG(electromyography) and muscle biopsy to find out if I have DM or something else...

Lord I trust you and leave my future in your hands. Amen

The cause of dermatomyositis is unknown. Viruses or autoimmune reactions may play a role. Cancer may also trigger the disease. It is possible that an immune reaction against cancer may be directed against a substance in the muscles. In other words, who knows??

DERMATOMYOSITIS IN A NUTSHELL: Your body's own immune system begins to attack and destroy your muscles, causing them to atrophy (waste away). It does not make any difference if you're in good physical shape or not, your muscles will shrivel and disappear even though you are still using them.

These are the tests they are doing to identify what I have...

Bloodwork
Creatine kinase (CK) is a substance made by injured muscles, this blood test is used to check for elevated levels as confirmation of the initial diagnosis.

EMG (Electromyography)
The test measures the electrical activity of muscles at rest and during contraction. Nerves control the muscles in the body by electrical signals (impulses), and these impulses make the muscles react in specific ways. Nerve and muscle disorders cause the muscles to react in abnormal ways.

Muscle Biopsy
The muscle biopsy is done to determine the extent of muscle damage.

Sometimes the cure is worse than the disease (or at lease a close second).
Stop the ride - I wanna get off!
It was either the steroids or life in a wheelchair. Makes it pretty much a no-brainer when you put it that way, doesn't it?

Have you ever seen a child in treatment for Leukemia or Cancer with their cute little chipmunk cheeks? I have (unfortunately) been enlightened: medically speaking, this severe swelling is referred to as "Mooning of the face" and it is a direct result of high doses of steroids over time. Personally, I call it adding insult to injury.

So now I haven't yet figured out what the lesson is in all of this, but I will. It is unlikely that I will return to the shape I was in before this disease, as muscles do not regenerate - we'll see. In the meantime, there are still plenty of things in my life to be thankful for: a merciful God, a loving family, and many wonderful friends (both online and off). If nothing else, I do have a much deeper understanding of the cliche, "If you don't have your health, you don't have anything." Boy, you can say that again! :-)

Be thankful for where you are...remember what you do can affect the rest of your life...

Another great day!