Aa
? Sarcoidosis & MS
Does Sacoidosis relapse and remit like MS? What's the difference between these diseases? I know that Sarcoidosis is a mimic of MS, but how do the doctors determine which you have when there is no definite test for both disease?
Thanks for this information. The best information always comes from someone who has personally experienced it. This will take me a little while to soak in what you have written here, but I will let you know!!!!! Again, thanks for taking the time to write this up for us!!!!
Hugs
~Santana~
Hugs
~Santana~
I was diagnosed with Sarcoidosis around 10 or 11 years ago through lymph node biopsy in neck.
Sarsoidosis is thought to be the great mimicker (sp) of MS on an MRI because Lession and lession sites look very similar. That is part of my dilemma. It seems as doctors are overly cautious to give a firm dx of MS if you have a dx of Sarcoid.
Here is a GREAT!! website to look over.
Foundation for Sarcoidosis research
www.stopsarcoidosis.org
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. An organ is affected when granulomas (masses of inflamed tissue, or lumps) form and cause an abnormality.
Many sarcoidosis patients do not have any symptoms. Some have only one symptom, while still others have several. General symptoms caused by the disease include fever, tiredness or fatigue, weight loss, night sweats and an overall feeling of ill health. Other symptoms typically depend on which organs the disease affects.
Symptoms
Lungs: The lungs are the most commonly affected organ in sarcoidosis. Ninety percent or more of people with sarcoidosis have lung involvement, whether they have symptoms or not. Common lung symptoms are dry coughing, trouble breathing, wheezing, or pain with breathing, chest pain, tightness, or discomfort and coughing up blood, which is rare, especially in the early stages of sarcoidosis.
Lymph Nodes: Lymph nodes are glands found throughout the body that make and store white blood cells. When sarcoidosis inflammation targets these glands, they become enlarged. Swollen lymph nodes can be uncomfortable, but they rarely cause medical problems unless they press on organs or blood vessels. Most commonly, it’s the lymph glands in the chest that are affected. Some of the other places you might notice enlarged lymph nodes (they appear as swollen lumps) include your neck, under your chin, in your armpit and in your groin.
Heart: Some people with heart involvement might notice symptoms, but many people will feel nothing, even in late-stage disease. Because heart problems can be very serious, everyone who has sarcoidosis should be screened for cardiac involvement. Sarcoidosis can cause the heart to pump weakly. This results in such symptoms as shortness of breath, swelling of the legs, wheezing and coughing - although these can be a sign of lung problems too. Sarcoidosis also can affect the heart’s electrical pacing and transmission system, which tells the heart when to beat. This can make the heart beat too fast or very slowly or skip beats. Symptoms of an electrical-system problem include palpitations (a fluttering sensation of rapid heartbeats), skipped beats and, rarely, fluid buildup in the lungs or sudden loss of consciousness. Find out more about cardiac sarcoidosis and its symptoms.
Brain & Nervous System: The nervous system includes the brain and all the body’s nerves, and it may be affected by sarcoidosis. The disease can cause a mass of granulomas in the brain or meninges, which are the membranes that cover the brain. The disease also can affect one or more nerves anywhere in the body. Most often, it affects the nerves of the face. Symptoms of the disease in the nervous system vary. If there is a mass in the brain, symptoms can include headaches, visual problems and weakness or numbness of an arm or leg. When sarcoidosis affects a facial nerve, it can cause one side of the face to droop. This may be the first symptom that someone has sarcoidosis. When sarcoidosis affects the spinal cord, it can cause weakness or even paralysis of the arms or legs. When multiple nerves in more than one place are affected, the disease can cause weakness, pain, or a "stinging needles" sensation in those areas.
Skin: Sarcoidosis of the skin can result in rashes or various types of skin lesions. If you have one of these skin problems it can be a clue to how serious your case of sarcoidosis is. One type of lesion is called erythema nodosum which causes raised, red, and tender bumps to form on the skin, usually on the front of your legs. Nearby joints are often swollen and painful. Erythema nodosum usually goes away on its own in 6 to 8 weeks, even without treatment. Having it is a good sign that you might have the type of sarcoidosis that also goes away on its own after a few months or years. Lupus pernio is an uncommon skin condition that causes hard, reddish-purplish bumps to form on your cheeks, nose, lips, and/or ears. These bumps do not go away on their own and often come back when treatment is stopped. They are usually associated with chronic sarcoidosis. In some cases, the sores are disfiguring and can damage underlying cartilage and bone. Other lesions may appear as bumps on or under the skin, rashes, sores, scaling, and/or changes in old scars or tattoos that do not go away and are rarely painful or itchy. These skin problems are also associated with chronic sarcoidosis.
Bones, Joints & Muscles: Musculoskeletal sarcoidosis (musculo=muscles, joints and bones=skeletal) can result in a number of symptoms. Early-onset arthritis, which is joint pain, stiffness, and/or swelling that usually occurs in the first 6 months of the disease, begins suddenly in one or both of the ankles and/or feet, and sometimes involves the knees, toes, fingers, wrists, and/or elbow joints. It often accompanies erythema nodosum, and it usually goes away on its own in a few weeks or months. Late-onset arthritis, which usually occurs 6 months or more after sarcoidosis develops, is less painful and affects fewer joints than early-onset arthritis (usually the knees and/or ankles, or sometimes the fingers or toes), and is often associated with chronic skin symptoms rather than erythema nodosum. This type of arthritis can last a long time or a lifetime, or it may come and go, but it usually does not go away for good without treatment like early-onset arthritis does. It can cause permanent joint damage and should be treated even when it is not painful. Sarcoidosis also can affect the bone marrow (soft, organic material that fills bone cavities), which produces blood cells. This can result in anemia, in which there are too few red blood cells, or a lowered number of white blood cells. Red blood cells are needed to deliver oxygen to the body; white blood cells help fight infections. In muscles, sarcoidosis may cause muscle aches or muscle pain (also called myalgia) or muscle weakness. The disease can also cause bone cysts, which are rare.
Eyes: Common symptoms of sarcoidosis in the eyes include: burning, itching and/or pain, dryness, tearing, red eyes, vision problems such as seeing black spots (called floaters) and blurred vision, sensitivity to light and small, pale yellow bumps on the eye. A condition called uveitis, which is inflammation of the membranes (uvea) of the eye, can result in many of these symptoms. Rarely, glaucoma, cataracts and blindness can occur if uveitis goes untreated. As a precaution, a routine eye examination performed by an ophthalmologist is recommended for anyone with suspected sarcoidosis. It is a good idea to schedule them annually for several years after your diagnosis, and routinely as recommended thereafter.
Kidneys & Urinary Tract: Sarcoidosis rarely attacks the kidneys directly. However, the disease can cause the body to overproduce vitamin D, which in turn causes the body to absorb too much calcium and can lead to kidney stones. Although they are uncommon in sarcoidosis, kidney stones can be painful when they break loose from the kidney and pass into the bladder, so it is a good idea to ask your doctor to check you for excess calcium before kidney stones have the chance to develop. Symptoms of kidney stones you might notice include pain in your back or side, or an increased urge to urinate.
Hope some of this info helps.
chow,
~Tonya
Sarsoidosis is thought to be the great mimicker (sp) of MS on an MRI because Lession and lession sites look very similar. That is part of my dilemma. It seems as doctors are overly cautious to give a firm dx of MS if you have a dx of Sarcoid.
Here is a GREAT!! website to look over.
Foundation for Sarcoidosis research
www.stopsarcoidosis.org
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. An organ is affected when granulomas (masses of inflamed tissue, or lumps) form and cause an abnormality.
Many sarcoidosis patients do not have any symptoms. Some have only one symptom, while still others have several. General symptoms caused by the disease include fever, tiredness or fatigue, weight loss, night sweats and an overall feeling of ill health. Other symptoms typically depend on which organs the disease affects.
Symptoms
Lungs: The lungs are the most commonly affected organ in sarcoidosis. Ninety percent or more of people with sarcoidosis have lung involvement, whether they have symptoms or not. Common lung symptoms are dry coughing, trouble breathing, wheezing, or pain with breathing, chest pain, tightness, or discomfort and coughing up blood, which is rare, especially in the early stages of sarcoidosis.
Lymph Nodes: Lymph nodes are glands found throughout the body that make and store white blood cells. When sarcoidosis inflammation targets these glands, they become enlarged. Swollen lymph nodes can be uncomfortable, but they rarely cause medical problems unless they press on organs or blood vessels. Most commonly, it’s the lymph glands in the chest that are affected. Some of the other places you might notice enlarged lymph nodes (they appear as swollen lumps) include your neck, under your chin, in your armpit and in your groin.
Heart: Some people with heart involvement might notice symptoms, but many people will feel nothing, even in late-stage disease. Because heart problems can be very serious, everyone who has sarcoidosis should be screened for cardiac involvement. Sarcoidosis can cause the heart to pump weakly. This results in such symptoms as shortness of breath, swelling of the legs, wheezing and coughing - although these can be a sign of lung problems too. Sarcoidosis also can affect the heart’s electrical pacing and transmission system, which tells the heart when to beat. This can make the heart beat too fast or very slowly or skip beats. Symptoms of an electrical-system problem include palpitations (a fluttering sensation of rapid heartbeats), skipped beats and, rarely, fluid buildup in the lungs or sudden loss of consciousness. Find out more about cardiac sarcoidosis and its symptoms.
Brain & Nervous System: The nervous system includes the brain and all the body’s nerves, and it may be affected by sarcoidosis. The disease can cause a mass of granulomas in the brain or meninges, which are the membranes that cover the brain. The disease also can affect one or more nerves anywhere in the body. Most often, it affects the nerves of the face. Symptoms of the disease in the nervous system vary. If there is a mass in the brain, symptoms can include headaches, visual problems and weakness or numbness of an arm or leg. When sarcoidosis affects a facial nerve, it can cause one side of the face to droop. This may be the first symptom that someone has sarcoidosis. When sarcoidosis affects the spinal cord, it can cause weakness or even paralysis of the arms or legs. When multiple nerves in more than one place are affected, the disease can cause weakness, pain, or a "stinging needles" sensation in those areas.
Skin: Sarcoidosis of the skin can result in rashes or various types of skin lesions. If you have one of these skin problems it can be a clue to how serious your case of sarcoidosis is. One type of lesion is called erythema nodosum which causes raised, red, and tender bumps to form on the skin, usually on the front of your legs. Nearby joints are often swollen and painful. Erythema nodosum usually goes away on its own in 6 to 8 weeks, even without treatment. Having it is a good sign that you might have the type of sarcoidosis that also goes away on its own after a few months or years. Lupus pernio is an uncommon skin condition that causes hard, reddish-purplish bumps to form on your cheeks, nose, lips, and/or ears. These bumps do not go away on their own and often come back when treatment is stopped. They are usually associated with chronic sarcoidosis. In some cases, the sores are disfiguring and can damage underlying cartilage and bone. Other lesions may appear as bumps on or under the skin, rashes, sores, scaling, and/or changes in old scars or tattoos that do not go away and are rarely painful or itchy. These skin problems are also associated with chronic sarcoidosis.
Bones, Joints & Muscles: Musculoskeletal sarcoidosis (musculo=muscles, joints and bones=skeletal) can result in a number of symptoms. Early-onset arthritis, which is joint pain, stiffness, and/or swelling that usually occurs in the first 6 months of the disease, begins suddenly in one or both of the ankles and/or feet, and sometimes involves the knees, toes, fingers, wrists, and/or elbow joints. It often accompanies erythema nodosum, and it usually goes away on its own in a few weeks or months. Late-onset arthritis, which usually occurs 6 months or more after sarcoidosis develops, is less painful and affects fewer joints than early-onset arthritis (usually the knees and/or ankles, or sometimes the fingers or toes), and is often associated with chronic skin symptoms rather than erythema nodosum. This type of arthritis can last a long time or a lifetime, or it may come and go, but it usually does not go away for good without treatment like early-onset arthritis does. It can cause permanent joint damage and should be treated even when it is not painful. Sarcoidosis also can affect the bone marrow (soft, organic material that fills bone cavities), which produces blood cells. This can result in anemia, in which there are too few red blood cells, or a lowered number of white blood cells. Red blood cells are needed to deliver oxygen to the body; white blood cells help fight infections. In muscles, sarcoidosis may cause muscle aches or muscle pain (also called myalgia) or muscle weakness. The disease can also cause bone cysts, which are rare.
Eyes: Common symptoms of sarcoidosis in the eyes include: burning, itching and/or pain, dryness, tearing, red eyes, vision problems such as seeing black spots (called floaters) and blurred vision, sensitivity to light and small, pale yellow bumps on the eye. A condition called uveitis, which is inflammation of the membranes (uvea) of the eye, can result in many of these symptoms. Rarely, glaucoma, cataracts and blindness can occur if uveitis goes untreated. As a precaution, a routine eye examination performed by an ophthalmologist is recommended for anyone with suspected sarcoidosis. It is a good idea to schedule them annually for several years after your diagnosis, and routinely as recommended thereafter.
Kidneys & Urinary Tract: Sarcoidosis rarely attacks the kidneys directly. However, the disease can cause the body to overproduce vitamin D, which in turn causes the body to absorb too much calcium and can lead to kidney stones. Although they are uncommon in sarcoidosis, kidney stones can be painful when they break loose from the kidney and pass into the bladder, so it is a good idea to ask your doctor to check you for excess calcium before kidney stones have the chance to develop. Symptoms of kidney stones you might notice include pain in your back or side, or an increased urge to urinate.
Hope some of this info helps.
chow,
~Tonya
My spots are white hypopigmented( loss of pigment) on my forearms. They are not severe, and the dermatologist that checked them said that he believed them to be from previous sun exposure as I have fair skin and have always burned easy.
I don't have any kind of red rashes or rashes at all actually anywhere! I do have a dry cough that is non productive that I have had for at least five years or more. It may be from smoking, but it really seems to be caused from stress. Kind of like a nervous habit. Maybe a lung x-ray wouldn't be a bad idea, just to be sure. But my GP has said that my lungs sound good and clear.
Now as far as the Sjogren's, I think I might fit this one more closely that the Scarcoidosis, with the severe dry eye and mild dry mouth and this dry cough. Also I have noticed that my nose doen't stay moist anymore and I am not sweating in even very hot temps. My body core temp only stays about 95-96 degrees. All of this makes me really wonder about Sjogren's, but the location of the lesions is what I am trying to figure out with Sjogren's.
I have Corpus Collosum lesions and I believe that some are on the Parietal and Occit lobes also. I know the Corpus Collosum lesions are common in MS but don't know much about the apearance of Neuro Sjogren's lesions or the location. Are Sjogren's lesions vascular? I think I read that somewhere, but not sure. Anyway my neuro said he didn't think I had a stroke from the appearance of the lesions, but rather thought it looked like ADEM. But where did all of this dryness come from right after my attack? Just doesn't make sense to me that it is not all related some how!!!!
~Santana~
I don't have any kind of red rashes or rashes at all actually anywhere! I do have a dry cough that is non productive that I have had for at least five years or more. It may be from smoking, but it really seems to be caused from stress. Kind of like a nervous habit. Maybe a lung x-ray wouldn't be a bad idea, just to be sure. But my GP has said that my lungs sound good and clear.
Now as far as the Sjogren's, I think I might fit this one more closely that the Scarcoidosis, with the severe dry eye and mild dry mouth and this dry cough. Also I have noticed that my nose doen't stay moist anymore and I am not sweating in even very hot temps. My body core temp only stays about 95-96 degrees. All of this makes me really wonder about Sjogren's, but the location of the lesions is what I am trying to figure out with Sjogren's.
I have Corpus Collosum lesions and I believe that some are on the Parietal and Occit lobes also. I know the Corpus Collosum lesions are common in MS but don't know much about the apearance of Neuro Sjogren's lesions or the location. Are Sjogren's lesions vascular? I think I read that somewhere, but not sure. Anyway my neuro said he didn't think I had a stroke from the appearance of the lesions, but rather thought it looked like ADEM. But where did all of this dryness come from right after my attack? Just doesn't make sense to me that it is not all related some how!!!!
~Santana~
Andie...Thanks for the info! I would like any info you can give me on this disease.
Sarcoidosis got brought up when I was in the hospital. They did a CT scan and saw a node on my lung. I have 4-5 lesions in the white matter of my brain. I think they are located in the centrum semiovale superiorly. There is a possible lesion in my c-spine but I've never had it confirmed on a better MRI machine.
Santana-I've read just recently you can have skin changes with sarcoidosis. It can cause red bumps to swollen spots just under the skin. Sarcoidosis is similar to Lupus from what I read, in that it attacks many organs. When it starts in the lungs, you can have wheezing and shortness of breath. It can be picked up on x-ray if you have the nodes that pop up.
I'm kinda in the same boat as you. I don't know if my symptoms are related to MS, Neurosarcoidosis, or Sjogrens. I did find out that through some research on the internet that Sarcoidosis and Sjogrens can involve the salivary glands and can cause them to swell.
I just don't know if Sarcoidosis or Neurosarcoidosis relapses and goes into remission like MS. I know Sjogrens can.
Sarcoidosis got brought up when I was in the hospital. They did a CT scan and saw a node on my lung. I have 4-5 lesions in the white matter of my brain. I think they are located in the centrum semiovale superiorly. There is a possible lesion in my c-spine but I've never had it confirmed on a better MRI machine.
Santana-I've read just recently you can have skin changes with sarcoidosis. It can cause red bumps to swollen spots just under the skin. Sarcoidosis is similar to Lupus from what I read, in that it attacks many organs. When it starts in the lungs, you can have wheezing and shortness of breath. It can be picked up on x-ray if you have the nodes that pop up.
I'm kinda in the same boat as you. I don't know if my symptoms are related to MS, Neurosarcoidosis, or Sjogrens. I did find out that through some research on the internet that Sarcoidosis and Sjogrens can involve the salivary glands and can cause them to swell.
I just don't know if Sarcoidosis or Neurosarcoidosis relapses and goes into remission like MS. I know Sjogrens can.
Do you know if white patches of loss of pigment on arms and also hair loss on that area could be related to this? I went to a dermatologist who said that it was sun damage, but who kept feeling the spots, especially the one that is about the size of a quarter. I ask what he was feeling for and he said to see if the skin was hard like in Scarcoidosis. He told me just to watch it and if it became hard feeling to let the come back in. This was a year ago, and I haven't noticed any changes in the spots as far as I can tell.
You said that it usually starts in the lungs! Do you know with what symptoms this presents in the lungs? Did you have a lung ex-ray, and what did it show?
I have some Corpus Collosum lesions too! Do you know if this is a common area for neuro scarcoidosis. I know it is for MS, but not sure about Scarcoidosis!
~Santana~
You said that it usually starts in the lungs! Do you know with what symptoms this presents in the lungs? Did you have a lung ex-ray, and what did it show?
I have some Corpus Collosum lesions too! Do you know if this is a common area for neuro scarcoidosis. I know it is for MS, but not sure about Scarcoidosis!
~Santana~
I am in the process of being Dx for "NeuroSarcoid" or MS...they say it mimic alot...when it is Neuro...CNS is involved...
I had a bone marrow biopsy last year and they found Granulomas in the bone marrow, which they feel might be Neurosarcoid...they have not found other granulomas, but I have Multipul White Matter Lesions in my subcortex?? which might be NS....or MS..also have lesions in my corpus collosum...
I'm seeing my Neuro tomorrow, and having another MRI head...at the end of July to see any changes....
I will keep you inform...let you know what the Neuro says tomorrow about Neurosarcoid etc...
are you being looked at for this..?? It usually starts in your lungs.??
take care
andie
I had a bone marrow biopsy last year and they found Granulomas in the bone marrow, which they feel might be Neurosarcoid...they have not found other granulomas, but I have Multipul White Matter Lesions in my subcortex?? which might be NS....or MS..also have lesions in my corpus collosum...
I'm seeing my Neuro tomorrow, and having another MRI head...at the end of July to see any changes....
I will keep you inform...let you know what the Neuro says tomorrow about Neurosarcoid etc...
are you being looked at for this..?? It usually starts in your lungs.??
take care
andie
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