My Letter

I haven’t really been keeping it totally a secret from you, but I have not been giving you the full complete truth on everything going on with me health wise. So many things going on, and I just didn’t think the time was right till now to share it with you.

I had my yearly medical exam in September as always. I told him I didn’t feel well. He added some extra blood lab work and a chest x ray, but all came back good.

I wasn’t feeling well during the holidays and made an appointment for 19 Jan with my regular doctor again. He referred me to a wonderful rheumatologist where I was diagnosed with Fibromyalgia 31 January, 2006. They still have this as one of the diagnosis.

I kept plugging a long the best I could, but still feeling ill all the time. I had my colonoscopy done on 10 Feb and as you know it came back good this time. On March 8 I had my GYN check up, which came in good. On April 3 I had my mammagram done.

I was getting worse by the day. I was having problems moving my feet to drive, getting in and out of the shower, turning in bed and couldn’t get socks on. The rash started getting much worse and looking really bad. I knew I had to get back to my rheumatologist fast. He seen me (and Ed by this time, can’t hide much from him now that I couldn’t drive or dress myself!) on 26 April. The exam was very frustrating and really showed me how bad I was. Blood work was like donating a pint! Not a good experience for me.

Then the radiologist from the breast center called and they had found a very slight spot at the very edge of my right side mammogram and could I come in for an ultra sound. I did, the very next day. If I had had the mammogram in November when it was first scheduled it may not have showed up. I had postponed my appointment because of having to hold my arms up on the bars because of the shoulder surgeries. They thought they found an enlarged lymph node deep behind the right breast in muscle about an inch in size. I was referred to a surgeon.

The next day I also had an appointment with my dermatologist and she took the two skin biopsies, one from my hand one from my upper arm. They did come back skin inflammation. Things were starting to move fast.

Lab work from my doctor's office taken on 26 April did not come back so well. One thing that was checked was what you call a CPK (or CP) blood enzyme test. Normal CPK levels are around 50-254 and can run significantly higher when Myositis is active (which means something going on with muscles). My first test was 6,327. I was truly sick and things started moving in a whirlwind, but I still didn’t have a definite answer to what was wrong.

On May 1, I was put in the hospital (out patient) and they did a deep muscle biopsy on the upper part of my right leg. The biopsy had to be flown to St. Louis and it took what seem for ever to get it back. It was the one true test that when put with all the others would give me a name to what was wrong with me.

On May 2, I was tested by neurology. He ran a EMB test. First they ran electric shock through my left foot, up through my right hip. Then they stuck with me needles to measure blood flow and nerve damage. Knowing they were going to do it wasn’t fun, but I was so sick and have so much muscle damage that from the knee up I didn’t feel much. They decided they wasn’t any use in checking any further up my body. Good thing out of this was that he didn’t find any nerve damage in my left leg.

I was started on the dreaded Predisone at really high levels and a muscle relaxer to try and help relieve some of the pain and give my muscles a break.


Then on May 11, I was put back in the hospital (out patient) for removal of the enlarged lymph node. I had had a CT scan in the meantime and they had checked from stomach to neck to see if they could find anything else, they didn’t. But now the mass was growing and had turned into two. The surgeon removed one the size of a 50 cent piece and another the size of a quarter. They were stacked on top of each other. The biopsy came back on May 16 and it was NOT cancer. It is a super cell growth called hyperplasia. They did the surgery under my right arm pit. It has healed well.

My CPK levels had dropped to 5,200, but they had to reduce all my medicine down because you don’t heal with them when having surgeries done. The doses are high again and I only have one of the skin biopsies that hasn’t healed well yet.

I have been having trouble getting all my medicine down and they scheduled a modified barium swallow test. It clearly showed pills sticking, but that everything else was working okay. They were able to teach me some techniques to try to swallow them better, and so far it is working rather well. I do not want an endoscope at this time, because I’ve been put out too much for surgeries.

On May 18, my doctor was able to give me a name to my disease. Dermatomyositis . Derma because of the skin problems, although they have greatly improved and Myo because of the muscle, itis for inflammation. I think it is just easier to say Myositis. There are four different types of the disease. I could be a whole lot worse off.

My muscles are attacking their selves. Right now my problems are on both legs from knee to hip. Both arms from elbow up through shoulders. My lower right arm has a few problems, but it isn’t real bad. I do have a problem with my right leg from the deep muscle biopsy. My leg is numb from a little below the knee to 2/3 ways up toward the hip, but this could improve. It is very difficult rolling over in bed at times and getting up from sitting positions at times. Ed is there to help me at every turn.

Since all the test are back in I am on very high doses of some very strong medicines:

1. Prednisone 20 MG 3 X day

2. Methotrexate 20 MG 1 X week (it is a cancer drug, but they have found it may help me with my disease) -it is a disease-modifying drug.

3. Hydroxychloroquine (Plaquenil) . 200 MB 2 X day. It is called a disease-modifying drug. It was first developed for the treatment of Malaria.

4. Skelaxin 800 MG 4-6 times a day. It is a strong muscle relaxer.

6. And various skin creams for the rashes.

My doctors goal is to get me into a remission and try and salvage as much muscle as we can. I’m in a catch 22 right now, because if I try to use my muscles too much, it makes it worse. That is why you will see me move very little and depend on a cane and wheelchair when I feel it is necessary, which is pretty well any where out of my home.

There is no way to tell how long it will take to get me into a remission. When we think we may be there he will start reducing the Prednisone. If a flare up doesn’t result that would be a very good sign! He has told Ed and I that this may be a long drawn out affair. When I get into a remission then I will be able to start exercising my muscles again. If I would do that now it would simply make them worse.

They have completely shut down my immune system to keep the muscles from killing each other the best they can. Down side there is that I could catch anything and everything. So I’m not out much and using hand sanitizers a lot! We have face mask bought up to use if needed.

Ed is taking super good care of me and I am positive things will get better!

I go back to the doctor on Taylor’s birthday, 8 June. I am sure there will be the brutal exam and blood work! The blood work takes a day or so to get it back, but I’ll keep you posted now.

I also wanted to let you know that my son's Sarcoidosis, although another rare auto immune disease is not in the same class as what I have. My doctor says there are 128 rare auto immune diseases. (and if anyone asks AIDS is not a rare one!! Ha).

Love,

Jackie