This is to "The Canadian". Some of your descriptions remind me of pophyria. Has this been considered for anyone in your family ever? I wish you and your family the best in finding answers.
What is considered to be a high ANA count. Mine is 1:2 with unexplained symptoms and no diagnosis. I am female, in late fifties and have always been very physically active and worked fulltime. My grandaughter, age 14, has recently experienced several rashes, blisters on her fingers and toes and she has sensitivity to the sun. She is waiting for a referral to a children's allergy specialist.
My four extremities are affected with either cold, numbness, dull pain in the day or hot burning pain in the evenings, which is worse at night. I have had an MRI, EMG and EEG, all of which were normal. I have had two clinical massages and both different therapists have told me that my legs and arms are very tight, the left one being tighter then then right and is colder than the right. I had a case of "dropped foot" in the fall of 2001 and since then have not been able to walk properly. The arch on my left foot is higher than my right and I sway to the right when I walk and seem to be lower on my right side. Previous to this I was perfectly normal. I have many allergies and have had many periods of neuralgia like pain over the years. I also had Bell's Palsy, and my mother died of a stroke at age 48. I do not have any organic diseases and no problems with high blood pressure, heart or diabetes. Yet, my symptoms seem to be progressive and affect my hands, arms, feet and legs and a very stiff neck. I also have speech problems that I never experienced before, either stuttering or problems with getting the word out. At first the neuro thought I had an upper motor neuron problem but when all the test results were normal, he could not make a diagnosis, and he seems now to have dismissed my problems. It will be two years in March since I had an MRI. Should I press to have another one or just continue on, not knowing what is happening to me, or trying to find some answers. I was told to stay off the internet and to stop trying to self diagnosing myself. I am not doctor bashing but what person wouldn't try to exhaust all possibilities in an effort to try to recover their good health and quality of life once more.
There seems to be a family history of MS on my mother's side, (first cousins, aunts) and leg problems on my father's side. I mentioned to my doctor about the possibility of vasculitis but he dismissed that, although my father had leg ulcers and my aunt died at age 50 from complications to the veins in her legs. I don't have varicose veins but there is a history of bleeding problems in my family and my clotting rate is at the low end of normal. There is also Pernicious Anemia on my mother's family, my grandfather and two aunts. I know I am listing a lot of information but I feel so hopeless not knowing which way to turn for help. I can't demand an MRI or other tests or referrals, but would like to find as much as I can on my own.
Hope to hear from others who have similar problems and who have received a diagnois.
The Canadian
I forgot to mention that they are also looking at MS however my Brain MRI was normal...I dont know if you can have MS with jsut lesions in the spinal cord but not brain.
I am not certain what they mean by lesion. If they are referring to an area of signal abnormality, then yes this can be associated with lupus. With lupus you can have inflammation of the spine or brain which can show up on MRI as areas of signal abnormality with or without swelling. However, a mass would not be related to lupus. I hope this answers your question. Good luck.