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
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IgG 12.4 g/L with a range of 6.3-14.9 g/L
IgA
Carrying on if it works:
IgA:
When i was reading through your post, the first thing that came to mind was MS. Then hearing about your lesions made me think that even more. Then when you talked about your blood work, i switched to the Lupus conclusion. Sometimes us medical professionals have a hard time fingering things out. Since some things are usually replicated to look like others, we usually find the answer by ruling out what its not.
I would say, from what I've heard other people go through during trying to get a diagnosis is go see a dermatologist and get a biopsy.
Then if that doesn't work, you could ask your rheumy for a spinal tap. Spinal taps tell doctors a lot go whats going on. Now and days the spinal tap has very little side effects. The major one being headache. To avoid it they say to lay on your back and rest for awhile and drink plenty of fluids.
I wish you the best and update us when you find out more.
Good Luck,
A
Here are all of my current symptoms:
- Muscle Weakness
- Muscle Fatigue
- Eyelid Droop w/ Cogan eyelid twitch
- Hands are shaky
- Fingers feel swollen, as if in hot weather
- Numb fingertips (Also with pain, feels like rug burn)
- Can't swallow properly, choking on food
- Constipation (must take PEG everyday)
- Muscle ache with the slightest exercise
- Thinning hair on head, extra hair on face
- Vertigo
- Sensitivity to sound, particularly in the mornings
- Sore wrists
- Patellar Femoral Sydrome (Knee Pain and clicking) (This went away while on prednisone, my only explanation is that while on it my muscles were stronger allowing my knee cap to track properly, when I go off, it slowly weakens and comes back)
- Lower back pain
- Brain fog/terrible memory
- Constant headache (pressure and paid behind my nose and eyes and then squishing feeling behind my ears)
- Chest feels heavy at rest, and very out of breathe with slightest activity
- Skin is sensitive to sunlight
Your story sounds familiar, as many of us with autoimmune diseases have difficulty getting a diagnosis. It often takes lots of time and patience. My GP suspected lupus in 2006, but ANA was always negative, as was the RA factor. A one-week trial of prednisone helped, but the GP couldn't treat me without "objective proof." I kept getting worse, until I was nearly paralyzed from the jaw downward in 2008, at which time I was diagnosed with Polymyositis (PM). Then at the end of 2010, after 6 months of arm rashes, I went to a derma who took skin biopsies that showed overlapping Dermatomyositis (DM) and Lupus. Prednisone helped me greatly.
I have experienced many of your symptoms, but know that these symptoms present in many autoimmune diseases. Going to a derma when you have skin issues might be a good idea, as a derma can diagnose both Lupus and Dermatomyositis. The myositis diseases cause worsening muscle weakness, but the PM and DM forms are treatable. However, the sooner the diagnosis, usually the better the recovery. Keep seeking for answers, and best wishes to you.
Mary Ann
IgG 12.4 g/L with a range of 6.3-14.9 g/L
IgA
I do have protein in my urine, 0.3g/L it has been like that for some time, but no doctor seems to give it much thought, I guess it is abnormal high but not enough to be an issue?
I also finally got into a pulmonologist yesterday and he believes my breathing troubles are likely caused my inflammation in the lining of my lungs. He says this is common in people with positive ANAs, so basically autoimmune things.
Feels good to finally have a couple other people also thinking along the same lines as I am. I am guessing I will have a 6+ month wait to get into a Rheumatologist :(
Has anyone had much luck with homeopathy or naturopathy?
Gluten-free diet
Avoiding all artificial sweeteners
Minimizing my intake of refined sugar
Eating lots of fruits and vegetables
Taking many supplements
Gentle exercise
My M.D. believes in integrative medicine, so she often helps me. And many times I do research on my own. Plus I listen to my own body.