Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hey Guys,
I am new here, but I have been struggling with a host of issues since September. It started out with these red blistery bumps on my fingers. I then started losing my strength in my hands. It also most feels like they are all swollen and don't work very well. This progressed to my arms and legs and eventually swallowing. I was sent to a Rheumatologist who said that while he could not rule Lupus or another autoimmune syndrome out they could not rule it in. I have been passed around from a Rheumatologist to a Neurologist, then to a Neuromuscular disease specialist. They have suspected myasthenia gravis but we have no diagnostic evidence of it. I have been sent for the antibody tests and they have been negative so far. I was sent for an MRI to see if there could be a central cause of the muscle weakness, where they found a lesion in my pituitary. They have tested all my hormones and they believe the lesion is just a Rathke Cyst and is fine where it is.
My neurologist has also sent me to a neuro-ophthalmologist and to an internist. The neuro-ophthalmologist has noticed a cogan eye twitch in my most droopy eyelid. The internist however says I meet the criteria for Chronic Fatigue Syndrome. I have found mestinon to be a huge help, however I have interstitial cystitis and it really bothers my bladder. I got to a point where I was unable to swallow solid food and my breathing was getting difficult. So at that point I was given a round of prednisone and it helped immensely. However all of my symptoms started to return again when I dropped from 20mg to 15mg.
I have now started to have a few more skin problems, like if I am out in the sun the bridge of my nose and upper cheeks get very red and stay that way for about 24 hours. I am not sure if this is the typical malar rash or not as it doesn't stick around.
I do have a positive ANA test at 1:160 with a speckled pattern. My DNA Double Strand Ab was 5kU/L. The Extractable Nuclear Ab Screen was negative, as was the Rheumatoid factor. My Cyclic Citrullinated Peptide Ab was
I am new here, but I have been struggling with a host of issues since September. It started out with these red blistery bumps on my fingers. I then started losing my strength in my hands. It also most feels like they are all swollen and don't work very well. This progressed to my arms and legs and eventually swallowing. I was sent to a Rheumatologist who said that while he could not rule Lupus or another autoimmune syndrome out they could not rule it in. I have been passed around from a Rheumatologist to a Neurologist, then to a Neuromuscular disease specialist. They have suspected myasthenia gravis but we have no diagnostic evidence of it. I have been sent for the antibody tests and they have been negative so far. I was sent for an MRI to see if there could be a central cause of the muscle weakness, where they found a lesion in my pituitary. They have tested all my hormones and they believe the lesion is just a Rathke Cyst and is fine where it is.
My neurologist has also sent me to a neuro-ophthalmologist and to an internist. The neuro-ophthalmologist has noticed a cogan eye twitch in my most droopy eyelid. The internist however says I meet the criteria for Chronic Fatigue Syndrome. I have found mestinon to be a huge help, however I have interstitial cystitis and it really bothers my bladder. I got to a point where I was unable to swallow solid food and my breathing was getting difficult. So at that point I was given a round of prednisone and it helped immensely. However all of my symptoms started to return again when I dropped from 20mg to 15mg.
I have now started to have a few more skin problems, like if I am out in the sun the bridge of my nose and upper cheeks get very red and stay that way for about 24 hours. I am not sure if this is the typical malar rash or not as it doesn't stick around.
I do have a positive ANA test at 1:160 with a speckled pattern. My DNA Double Strand Ab was 5kU/L. The Extractable Nuclear Ab Screen was negative, as was the Rheumatoid factor. My Cyclic Citrullinated Peptide Ab was
I now have really bad foot pain. The joint between my little toe and my foot on my left foot hurts soo bad. No matter what shoes I wear nothing helps. It seems alot better if I wear no shoes, but that isn't really an option at work. Does anyone have any idea of what I might be able to do to help the pain besides ibuprofen. It is starting to make me limp :S
He basically said he can rule out anything Rheumatic. That it is possible to have an autoimmune disorder, so long as there is no inflammation there is nothing they can do to help me. He feels that even if I go on steroids again, eventually they will stop helping me at all and then I will just be left with horrible side effects from a drug that did nothing anyways.
I am soo crushed and upset. All I want to do is cry and be alone. I am soo sick of being sick. I just want my life back :'(
That must be so frustrating! I hate that helpless feeling; you know something's wrong, but no one seems to want or be able to help.
I'm in a similar situation, I think, except I haven't heard back about my blood results yet. I'm terrified they'll come back with a negative ANA, because I really do think lupus is the problem. Joint pain, stiffness, and inflammation--especially fingers and knees--photosensitivity and malar rash, debilitating fatigue that seems to come out of nowhere, anemia, pain upon inhalation with no sign of a chest cold or anything else that would cause it, low fever, and even some scary stroke-like symptoms last summer that no one was able to explain. The neurologist tried to call it a migraine, but there was no headache involved and it just doesn't make sense.
I'm sorry to hijack your thread like this, but I'm freaking out and am sick and tired of feeling awful and not being able to do anything about it. You're not alone in that, at least. I hope you can figure out what's wrong and get treatment sooner rather than later.