Being tested for Dermatomyositis - Myositis Message Board

Dxiechix · 11-26-2006, 08:42 PM

Hello,
This is the first time I am posting here. I have been having muscle and joint pain for about 3 to 4 months. When I stop and think back to some of the symptons I have had, I wonder if this has not been developing for about a year now. Last December I went to my PCP with a rash around my neck, upper chest and back that I had noticed for about 3 weeks at that time. He thought I was allergic to something and gave me predizone. It cleared up for a few weeks and would sparatically appear over the next 6 months. After a while it started appearing on my face & arms too. I made an appointment with a Dermatoligst and she prescribed predizone in a cream form to apply to my face, neck and arms for a month. I went back for a check-up and I looked better. She said she thought I had Polymorphis Light Eruption and told me to use the cream whenever I needed to and said to make an appointment if I thought I needed to be seen again. That was in July or August. Late September I noticed that when I would go to get out of bed in the mornings I could hardly lift myself up because the muscles and joints in my shoulders hurt so bad. I had just had my blood pressure medicence changed a few weeks earlier and I thought it might be a reaction to it so I made another appt. to see my PCP. By the time I got in to see my doctor the pains had moved to my hands and the big toes on both feet. When I saw him he took me off of my blood pressure mads. for a week and at the same time they did a bunch of bloodwork. A few days later I got my results and they said my results showed high levels indicating Inflamed Arthritis and wanted to see me again for more test. I went back they did more bloodwork. This was on a Tuesday. They got me an appointment with a RA doctor. But could not be seen until Jan. 18, 07. I called another RA doctor and made my own appointment and they could see me on Nov. 17th. They had prescribed me Loratab for the pain. By Friday I was in so much pain I called them to see what could be done and my doctor was off and the other doctor that was in would not do anything. I was told that they could not see me again until Oct. 23rd. but to call back on Monday when my doctor was working and maybe he could change the pain meds. Monday came and by miday my face was broke out in a splotchy rash across my cheeks (in a butterfly shape) and was running a fever. My sister is a nurse and works in the ER at my local hospital. I called her to tell her how bad I felt and what my symptons were. She said come on in. I work about 30 minutes from the hospital. I do not remember driving to the hospital that day. When I got there they immediately said that it appeared that I might have Lupus. I was admitted to the hospital and had every kind of test possible. I ran a fever of 103* for three days. The only thing that came out of all the test was that my muscles were inflamed about twice the amount that they should normally be. They finally let me go home Friday night with more pain medications and they were able to get me into the RA doctor the next Friday. He ran more rare Autoimmune Diseases blood work. It all came back ok except the same thing showed up about my muscles being inflamed. He said to come back in January had he would check my blood again. In the meanwhile I went to the 2nd RA on Nov. 17th. He did a much more thourgh exam and more bloodwork. He talked to me in great lengths and after we talked he said that what he thought it was was Dermatomyositis (DM). He has scheduled me to have test done with a Nuralogist on Nov. 28th. They are doing an EMG and NCV's then.

I know I have been lengthy in my post but I am confused and frustrated. I have been very emotional over the last few months. I wrote this in an attempt to see if anyone else went through this before being diagnosed. I feel helpless, sad and angry all at once. I will be feeling fine and then the pains hit and I will find myself crying in frustration. I hope someone understands this. As much as my family trys to understand I know it will get old one day and I hate letting them down when they want to do something and I do not even want to get out of bed.

Sincerely,
Elsie
Sanford, FL

kiwi girl · 11-26-2006, 09:38 PM

Hi Elsie. I do understand to a point, my problem is MS related and I have been very ill and feel terriblely alone, but more to the point for you is I have a child who has been ill with Dermatomyositis for 18 months, you may have read my previous threads. She is such a brave kid. Are you meaning the muscle test as the CK which is a muscle emzyme, my daughter was 16,000 in may last year, she lives with awful pain and rash, sore stomach and knee. She had EMG which showed muscle myopathy and had biopsy in August which showed to cells, but living in a very small country the Doc;s have never had to deal with this and are driving me nuts with all there mucking around, they have decided to send biospys to another country for more testing, so she has still not had any treatment. 18 months is along time. Her liver was elevated as well. If you want to chat, I am here for you, as I can understand seeing what my child goes through and course the pain that I suffer each day. Find out if you are to have a biopsy and see if you can find out if the blood test is the CK.
Take care

Dxiechix · 11-26-2006, 09:46 PM

The blood test was CK and it was elevated. I am having two test done this Tuesday. One is an EMG and the other is an NCV. Tonight is a bad night I can not lay down because the muscle in my left leg (around my hip) is having spasams. All I have to take right now are pain pills. And they don't seem to work as good as they did in the beginning. Right now all I am doing is crying. How old is your child? I can not imagin being a child and going through this.

Thanks
Elsie

tmjtrans · 11-26-2006, 10:25 PM

Sorry to here you are going through this. I was diagnosed in August. Mine started with a rash, very similar to what your experienced. In July, I was given Allegra for the "allergy" with all the itching, but that didn't work. By the first week of August, I had raw sores all over my chest, head and neck and my chest was purple and I could hardly walk. When I finally saw the RA the end of August, I could hardly get out of a chair, walk up stairs, etc. and my skin on my neck, chest and thighs was horrible! My CPK at that time was 6,000 (normal is under about 170 I think) and my muscle strength on manual testing was about 3/5. He started me on prednisone (80 mg a day) and sent for all those "rare" blood tests. He also ordered the EMG/NCV which showed muscle deterioration consistent with DM.

The pain will subside as your muscles start to heal. I have been told the course of treatment is prednisone to get things "under control" and then adding Imuran with an abnormal CPK and Methotrexate with a "normal" CPK as well as Plaquenil for the skin. I started with 80 mg of prednisone the first of August and finally (after a miraculously normal CPK) was able to taper to 60 mg about four weeks ago and am now down to 20 mg. I was given Vicodin for pain...don't know if that is stronger than what you are taking, but it did help quite a bit with the pain.

If your RA did not start you on prednisone or any other medication besides pain meds and believes you have DM, I would definitely start asking some questions or request a second opinion. While the EMG/NCV should confirm or disprove his diagnosis, you should still be treated with something besides pain meds.

It does get better! Each person is different and require different dosing of medications. It is a lonely, hard world right now, but improvement is on the horizon. I tried everyday to think of how much worse I could be and tried not to focus on all the symptoms of the disease (like when I couldn't dress myself, get out of bed on my own and had to get a lift chair because I couldn't get up). I was a healthy 40-year-old one day and within two weeks could hardly even walk. Now, four months later (and definitely a miracle along the way) my muscles are much, much better but my skin is still an issue, but I continue to focus on the positive things which really seems to help.

I totally understand your situation and will pray for your healing!

Dxiechix · 11-27-2006, 04:19 PM

Thanks, I will ask him on Wednesday about getting me started on something besdies pain med. And I want to know what my CPK has been. Today I have been getting muscle spasms in my legs real bad. This is encouraging that you have saw that quick a results from the Pred. Hopefully that will be the same for me if they ever get me started on them. haha.

Elsie