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Does sarcoidosis spawn other diseases
My daugher is 13 yrs. old & her father was diagnosed with Sargoidosis several years ago. She has the same symptom as him. The Pulmonary specialist doesn't think she has Sarcoidosis. Her chest x-ray is normal. She has had many blood test ran & all are normal. Her symtoms are getting worse & more consistant. As a mother I am very scared. She has major pain in her head, back neck & ribs that she says it feels like someone is stabbing her with the point of a sharp knife. She gets very hot but never has a temperature. Has little pink bumps that itch like crazy. She has a very hard tiem breathing just riding her bike & can't take gym as school. The doctor's say she doesn't have asthma. The asthma medicine doesn't help. They have her on Lyica which doesn't help the pain at all. She has problem with her eyes watering & burning, urge to urinate & tightness in the chest. She recently has been having problems with weakness in her legs & arms. She has pass all the nuerological tests. If her dad has Sarcoidosis & she has the exact symptoms & the doctors says she doesn't have it then what could she have. I need help! Can someone help answer these questions???
MEDICAL PROFESSIONAL
The symptoms and signs you describe are, for the most part, not typical for, or at least uncommon with sarcoidosis. Specifically, pain and muscle weakness would be unusual, in the absence of evidence of central nervous system (CNS) involvement with sarcoidosis, but then you say that “...she passed all the neurological tests”. CNS involvement is a very serious problem and whatever testing is necessary to absolutely exclude involvement of the central nervous system, should be performed. I assume this included imaging, such as a CT scan or magnetic resonance imaging (MRI) of her brain. Skin nodules are common, in a variety of forms and a biopsy of these could well demonstrate the “granulomas”, characteristic of this disease.
Respiratory x-ray signs occur with a high frequency. But there can be significant pulmonary involvement with lymph node enlargement, lesions within the airways and interstitial lung disease (ILD). With the exception of the lymph node enlargement, the other 2 can be present and a cause of shortness of breath, in the presence of a normal chest x-ray. She should have pulmonary function tests (PFTs) performed and a CT scan.
Eye symptoms are common, including watering and burning, but also excessive dryness. Basically, sarcoidosis can involve almost every organ, including the heart and that involvement could be responsible for shortness of breath, in the presence of uninvolved lungs.
But, none of these signs or symptoms are specific for sarcoidosis. You and her doctors should not assume that she does or does not have sarcoidosis.
Given the similarity of your daughter’s symptoms to those of her father, it would be of interest to recall how his diagnosis was established.
Assuming that there is a physical basis for her symptoms, the most important issue here is that your daughter appears to have a multi-system disease, without an established diagnosis. The doctors should take an aggressive approach to diagnosis. One major worry, for me, would be that she might be suffering from some form of vasculitis, given the multiple symptom sites.
I suggest that you request consultation with a rheumatologist and that you arrange for that consultation, without delay.
Good luck.
Please give us a follow-up to let us know how you she is doing.
Respiratory x-ray signs occur with a high frequency. But there can be significant pulmonary involvement with lymph node enlargement, lesions within the airways and interstitial lung disease (ILD). With the exception of the lymph node enlargement, the other 2 can be present and a cause of shortness of breath, in the presence of a normal chest x-ray. She should have pulmonary function tests (PFTs) performed and a CT scan.
Eye symptoms are common, including watering and burning, but also excessive dryness. Basically, sarcoidosis can involve almost every organ, including the heart and that involvement could be responsible for shortness of breath, in the presence of uninvolved lungs.
But, none of these signs or symptoms are specific for sarcoidosis. You and her doctors should not assume that she does or does not have sarcoidosis.
Given the similarity of your daughter’s symptoms to those of her father, it would be of interest to recall how his diagnosis was established.
Assuming that there is a physical basis for her symptoms, the most important issue here is that your daughter appears to have a multi-system disease, without an established diagnosis. The doctors should take an aggressive approach to diagnosis. One major worry, for me, would be that she might be suffering from some form of vasculitis, given the multiple symptom sites.
I suggest that you request consultation with a rheumatologist and that you arrange for that consultation, without delay.
Good luck.
Please give us a follow-up to let us know how you she is doing.
My daughter keeps getting new symptoms. Now for the last 5 days she has hardly any muscle tone & is very light headed & dixxy & feels like she is going to pass out. She hasn't passed out yet. The emergency room won't do anything because this is an ongoing problem & nothing they can fix.
Do her thighs, hips and upper arms hurt? Does she ever have trouble swallowing?
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