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PNH Support Group FAQ (Frequently Asked Questions)



Category: Main -> I HAVE THESE STRANGE SYMPTOMS . . . DOES ANYONE ELSE EXPERIENCE THESE?

Question
·  I have dark urine in the morning
·  I don’t have dark urine in the morning
·  I have a lot of abdominal pain
·  I have pain in my lower back; I get frequent headaches
·  I have difficulty swallowing
·  I get a funny, restless feeling in my legs
·  My toes are always cold
·  I have episodes of extreme fatigue
·  My eyes are yellow
·  My doctor told me I have gallstones

Answer
·  I have dark urine in the morning

Dark urine is caused by the presence of breakdown products of red blood cells. When red blood cells are broken down in the blood vessels (hemolysis), excess hemoglobin is lost in the urine (hemoglobinuria). It’s the hemoglobin that gives the urine its dark color. Usually the urine is darkest in the morning and gradually clears up as the day goes on. This is a classic symptom of PNH.

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·  I don’t have dark urine in the morning

Not everyone with PNH has the symptom of dark urine. It’s possible to have hemolysis without noticeable hemoglobin in the urine.

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·  I have a lot of abdominal pain

Many people with PNH have abdominal pain. For some, it’s a minor inconvenience, while for others it is a daily challenge. It is usually associated with episodes of hemolysis. One theory is that this is a result of small blood clots in the abdominal veins; however we really don’t understand the reasons behind abdominal pain. Some patients also experience gastro-intestinal disturbances as well. We don’t really understand why this happens. Some patients take steroids (prednisone) or pain killers to deal with abdominal or lower back pain. Others are able to tolerate the pain without medication.

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·  I have pain in my lower back; I get frequent headaches

Many of us also experience lower back pain and headaches. We don’t know why these occur. If your headache is sudden and severe, especially if it is accompanied by symptoms of a stroke, you should go to the emergency room of the nearest hospital. Because PNH patients are prone to blood clots, you may be experiencing a blood clot in your brain. This is a medical emergency and must be treated immediately.

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·  I have difficulty swallowing

Difficulty swallowing, or dysphagia, is a common problem among people with PNH. It often occurs during a hemolytic crisis. Some people describe dysphagia as a feeling that what they swallow gets stuck in their throat. Others describe it as a sharp pain in their upper chest. It is caused by spasms in the esophagus, possibly because free hemoglobin from hemolysis binds nitric oxide. Nitric oxide allows the muscles in the esophagus to relax, and when it is unavailable, the muscles in the esophagus contract in spasms. Nitroglycerin may help relieve the spasms in some people. However, many patients are able to tolerate these episodes of dysphagia without medication.

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·  I get a funny, restless feeling in my legs

Restless legs syndrome is another symptom that some people with PNH experience. RLS is described as a crawling or tingling feeling in the muscles, with an overwhelming urge to move the legs. Iron deficiency is being researched as a possible cause for RLS in some people, so that may explain why some people with PNH suffer from RLS. Massage or stretching may help alleviate the symptoms.

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·  My toes are always cold

Again, many people with PNH have cold hands and feet. This is probably due to anemia.

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·  I have episodes of extreme fatigue

Fatigue is very common among people with PNH. Most of us find that we have to curtail our activities at times because of fatigue. We have found that the best way to combat fatigue is to rest. It is important to learn your own way to cope with fatigue, to pace yourself, and know and respect your limits.

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·  My eyes are yellow

The yellowing in your eyes is called jaundice and is caused by a buildup of a pigment, bilirubin, that is a byproduct of hemolysis. The body normally excretes bilirubin in the bile, but if hemolysis is severe, bilirubin may build up in the body, causing the whites of the eyes to turn yellow and the skin to take on a yellowish cast.

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·  My doctor told me I have gallstones

Gallstones are also a common problem in people with PNH. Because of hemolysis, more bilirubin is present in the bile, which is stored in the gall bladder. The excess bilirubin can precipitate and form bilirubin stones in the gall bladder. Gallstones can become a problem when they block the flow of bile into the intestines. Symptoms of a gall bladder attack include severe abdominal pain, especially on the right side of the abdomen, fever, nausea, vomiting, and chills. You should see your doctor immediately if you experience these symptoms.

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