Aa
Please help me identify this autoimmune disease!
I am a 33 year old woman. Last month, I was at work and wasnt feeling well. My vision was blurred, my stomach was upset and I had a headache. After about two hours of working, my hands started typing words that were gibberish, although I knew what I wanted to write. I was taken to the emergency room and admitted. They did a MRI, MRA of my neck and head, an EEG, and a Cat scan. They all came back normal and I was released 3 days later. I should also mention preceding the admission to the hospital, I had an incurable thirst for water. They also did a Cortisol test to rule out Diabetes Insipididus, which came back normal. The neurologist discharged me by saying it was a basiliar migraine, affecting my motor and cognitive functions.
One symptom that was overlooked by EVERY doctor and nurse that saw me in the hospital was a red, inflamed, scaly, peeling rash on my eyelids. Only my eyelids. It felt like a sunburn. It burned really bad, would peel, get a little better and then come back. I also had very dry knuckles on both my fingers and the top of my hand, so much the point they would crack and bleed. When they did heal a little, they had a very odd scab on them. Then, they would get red and do it over again. No amount of lotion would help them.
I lost my peripheral vision, I move very slowly because my muscles feel like I just did a rigorous amount of exercise even though I havent. They throb all the time. My joints in my knees are sore. My hands work occasionally (thank God for spell check) but I am having a hard time with motor function- eating with utensils, opening jars, picking things up with my hands. Also, I have a form of spasmodic dysphonia. Its very difficult to speak.
A week after being released from the hospital, I was taken to another emergency room because the symptoms had not resolved. I was evaluated by a neurologist from Barrow's, who evaluated my symptoms. He felt the rashes and other issues pointed to an auto immune disease, and referred me to a rheumatologist. I saw one the following Monday, who looked at my eyes, the ulceration beginning on my toe, my hands and said that all clues were pointing to an autoimmune disease. She ordered several antibody tests and immediately put me on 60mgs of p\prednisone daily, Omeprezole for the heartburn and stomach issues with the Prednisone. She also put me on D2, saying my levels were amazingly low (bloodworked). She referred me to an ENT, saying that she thought there might be other issues with the muscles in my throat.
I saw the ENT on Monday, who scoped my throat and said that I am having severe muscles spasms when I talk, suggested I see a Dr in his practice that specializes in voice disorders. I did today, who said that the Spasmodic Dysphonia normally presents alone. However, that with the other muscle issues that I am currently having, it may resolve itself. The only 'cure' is Botox in my vocal chords, which is not covered by my insurance.
I am just at my wits end. I get tired doing nothing. I am normally VERY active, working full time and going to school. I have not been able to work now for almost a month. I cannot sleep, because of the high dosage of the prednisone, but my Rheumatologist wont give me anything because she said she doesnt want me to stop breathing in the middle of the night. The rash on my eyelids was gone after about 4 days on prednisone, which the Rheumatologist said is highly suggestive of an auto immune disorder. I did alot of research, and based on what I can find, it appears to be Dermatomytosis- the Heliotrope rash and Gottrons postules look exactly the same as my rashes. However, all of the blood work she did has come back NORMAL! Now that I am on predinsone, and such a high dosage of it, the blood work now will not show any inflammation or any type of issues. I am at my wits end. I cannot drive, I cannot walk, I have difficulty eating if I cannot eat with my hands. I cannot see other than what is right in front of me. What's wrong with me!
One symptom that was overlooked by EVERY doctor and nurse that saw me in the hospital was a red, inflamed, scaly, peeling rash on my eyelids. Only my eyelids. It felt like a sunburn. It burned really bad, would peel, get a little better and then come back. I also had very dry knuckles on both my fingers and the top of my hand, so much the point they would crack and bleed. When they did heal a little, they had a very odd scab on them. Then, they would get red and do it over again. No amount of lotion would help them.
I lost my peripheral vision, I move very slowly because my muscles feel like I just did a rigorous amount of exercise even though I havent. They throb all the time. My joints in my knees are sore. My hands work occasionally (thank God for spell check) but I am having a hard time with motor function- eating with utensils, opening jars, picking things up with my hands. Also, I have a form of spasmodic dysphonia. Its very difficult to speak.
A week after being released from the hospital, I was taken to another emergency room because the symptoms had not resolved. I was evaluated by a neurologist from Barrow's, who evaluated my symptoms. He felt the rashes and other issues pointed to an auto immune disease, and referred me to a rheumatologist. I saw one the following Monday, who looked at my eyes, the ulceration beginning on my toe, my hands and said that all clues were pointing to an autoimmune disease. She ordered several antibody tests and immediately put me on 60mgs of p\prednisone daily, Omeprezole for the heartburn and stomach issues with the Prednisone. She also put me on D2, saying my levels were amazingly low (bloodworked). She referred me to an ENT, saying that she thought there might be other issues with the muscles in my throat.
I saw the ENT on Monday, who scoped my throat and said that I am having severe muscles spasms when I talk, suggested I see a Dr in his practice that specializes in voice disorders. I did today, who said that the Spasmodic Dysphonia normally presents alone. However, that with the other muscle issues that I am currently having, it may resolve itself. The only 'cure' is Botox in my vocal chords, which is not covered by my insurance.
I am just at my wits end. I get tired doing nothing. I am normally VERY active, working full time and going to school. I have not been able to work now for almost a month. I cannot sleep, because of the high dosage of the prednisone, but my Rheumatologist wont give me anything because she said she doesnt want me to stop breathing in the middle of the night. The rash on my eyelids was gone after about 4 days on prednisone, which the Rheumatologist said is highly suggestive of an auto immune disorder. I did alot of research, and based on what I can find, it appears to be Dermatomytosis- the Heliotrope rash and Gottrons postules look exactly the same as my rashes. However, all of the blood work she did has come back NORMAL! Now that I am on predinsone, and such a high dosage of it, the blood work now will not show any inflammation or any type of issues. I am at my wits end. I cannot drive, I cannot walk, I have difficulty eating if I cannot eat with my hands. I cannot see other than what is right in front of me. What's wrong with me!
One thing that has come back on my bloodwork twice now is that my creatine kinase is low. The first time it was 21, then a month later its at 15. I dont know what that means. My emg overall came back 'within normal limits' - the dr used averages for his overall diagnoses. however, there were several ones within certain ranges that were abnormal. she saw that in my reflexes when I was in her office today. ive been referred to Mayo Clinic now, but dont know when they'll call- my insurance runs up at the end of this month so hopefully soon.
I am so sorry to hear of all you're going through! I am sorry that I cannot offer you any answers to what the label will be for this plague effecting you. Even though it's so frustrating not to know exactly what it is, what's really important is that you have a rheumatologist who is treating you and watching and working with you. Sometimes it takes many years to distinguish exactly what is going on. In my case too when my symptoms were at their worst and I was miserable my bloodwork was negative. You mentioned leading a pretty busy life. My symptoms seemed so out of control when I was working and going to school as well. We are conditioned to think we can do it all. But take this as your body's way of saying it just can't. Whatever the label for your disease stress and probably lack of sleep are triggering you into a flair. Things may improve if you are able to focus on what you can do to help your body to fight and heal. I know that's easier said than done. Believe me I understand. I just know that for me this has helped tremendously. I hope you feel better soon and that they are able to give you a diagnosis!
Blessings
Blessings
My bloodwork did not show my dermatomyositis either..it was found from doing a muscle biopsy.
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