Autoimmune disorder, Pain, Vision compromised. Help!

[MelissaM789]

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!

[MelissaM789]

Thank you. I have looked at mg as well, the problem is that all of these auto immune disorders seem to follow the same patterns but with just slight changes... I don't know if the dr looked for MG but she did look for lupus and dermato/polymytosis. I have FINALLY been accepted as a patient with Barrow Neurological institute and have my appointment tomorrow morning. I am going to ask about MG but also about the prednisone because the only thing it seems to have helped is the rashes, not the fatigue or muscle weakness and it's made my acid reflux worse to the point I have to take prescription meds twice a day to combat it. Just seems the benefits aren't outweighing the negatives.

Sorry it took so long to respond, I hadn't checked the website in a while since I hadn't got any hits for a bit. Thank you again, m

[grannymusiclover]

P.S.  A couple of other things: It can cause some people to lose the ability to speak entirely. The interesting thing about this illness is that it usually comes and goes in episodes. Articles said that muscle weakness in the arms and hands could cause difficulties opening jars, holding onto utensils, holding up a hair dryer long enough to get your hair dry, anything involving sustained strength. Sound familiar? Legs can be so weak that walking is a crap-shoot. Legs can suddenly just give out and you fall. The thing here is that the longer you use a particular muscle or group, the faster you become weak and unable to function. Rest is supposed to help a little, at least temporarily. What you have described sent up a red flag. Ask about it if you haven't done so already. It can be treated successfully. Not cured, but managed. Or, if you think I'm off the wall, just ignore me. I won't mind. Grannymusiclover.

[grannymusiclover]

Hi! I'm new to this community. I haven't gotten a sure diagnosis yet--bloodwork to be done next week. But, I just had to comment to your post. Many of your symptoms are exactly what I found last night, searching on the internet for answers to my condition. I have almost every symptom you do. Have any of your doctors mentioned "myasthenia gravis"? Check it out if you have access to the internet. It fits to a "T". My doc has ordered blood tests to determine if that diagnosis is the correct one for me. One of the standard treating drugs is prednisone or other steroids. There are also heavy-duty drug treatments available. One of the cardinal signs of this disease is that it responds quickly to steroidal drugs like prednisone. It often affects the eyes first. Sometimes it goes on to affect swallowing, speech, and facial muscles. Then, it can, in some people, affect the rest of the body, causing severe fatigue in arm and leg muscles. My eyes have begun crossing, along with most of the other things I've mentioned. Have you been tested for this? It most commonly begins in young women under 40 and in men over 60. It can cause hoarseness in the voice, coughing and choking on food, slurring of speech, extreme muscle weakness, blurred or double vision, droopy eyelids, and the most severe thing is called: A MG crisis. It's when your chest muscles are so weakened that you can't breathe. Then, it's an emergency. Oh well, just trying to help answer your last question. Remember though, I'm not a doctor. Just what I say I am: grannymusiclover.