Tuberous Sclerosis

by talesin 4 Replies latest jw friends

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  talesin

  A friend of mine has been diagnosed with 'Tuberous Sclerosis'. She is in her late 20's.

  We (her hubbie & I) have been researching on the web, learning stuff about the disease.

  There is a complication that we are concerned about, and her medical team has no answer. I thought that maybe one of you may be dealing with this disease, and may have information that would be useful ...

  She was hospitalized due to a seizure, has tumours on her kidneys (which is common for TS). The big problem, though, was that her hemoglobin is very low. She is having internal bleeds.

  All the information we have found says nothing about low hemoglobin. The doctors just throw up their hands, and say we don't know.

  I have a suspicion that this could be related to her meds. Any comments from those who may be dealing with this disease or from any medical professionals that have knowledge of this? Have you taken a particular med that contributed to or caused internal bleeds? Does your TS have this symptom?

  We are not trying to supersede her physicians, just to supplement with information so that she can present it to her specialist when she sees him next week. For example, if we can determine that one of her meds may be causing this, her urologist can take it into consideration.

  In other words, 'Pro-active medical consumerism.'

  thanks for your help

  talesin

  EDIT: I have to catch a few ZZZZZZZs now, but will check back tomorrow for replies. Thanks!
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  Nathan Natas

  Talesin, I am very sorry to hear of your friend's medical problem.

  I am not a doctor, and I know nothing about Tuberous Sclerosis. I did a web search for "tuberous sclerosis" +anemia and came up with the following information. It appears that kidney complications or spleen complications might explain your friends anemia.

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  It would be noteworthy that, in combination to hypersplenism, reduction of hematopoietic space as a skeletal manifestation of tuberous sclerosis may sometimes induce severe hematological problems.

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  The cardinal features of hypersplenism are (1) splenomegaly; (2) reduced levels of one or more blood cell elements, resulting in anemia, leukopenia, thrombocytopenia, or any combination thereof, in association with hyperplasia of the marrow precursors of the deficient cell type; and (3) correction of the cytopenia by splenectomy.

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  Bleeding, stomach pains, fevers, anemia or feeling generally unwell can be due to bleeding from the kidney either intothe urine or around the kidney, or into the stomach. These problems can also be associated with kidney or bladder infections. Kidney failure is very rare in TS, and doesn't have any specific symptoms. People with it may just feel generally tired, sleepy, have itchy skin, a loss of appetite or may not even realize they are unwell. Hence, monitoring kidney problems with regular kidney ultrasounds, blood tests to check kidney function, and blood pressure and urine tests is a good idea. High blood pressure, anemia and deteriorating kidney function can be signs of polycystic kidney disease.

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  Kidney problems such as cysts and angiomyolipomas occur in an estimated 40 to 80 percent of individuals with TSC, usually occurring between ages 20 and 30. Cysts are usually small, appear in limited numbers, and cause no serious problems. Approximately 2 percent of individuals with TSC develop large numbers of cysts in a pattern similar to polycystic kidney disease2 during childhood. In these cases, kidney function is compromised and kidney failure occurs. In rare instances, the cysts may bleed, leading to blood loss and anemia.

  Angiomyolipomas - benign growths consisting of fatty tissue and muscle cells-are the most common kidney lesions in TSC. These growths, which are not rare or unique to TSC, are found in about 1 in 300 people without TSC. Angiomyolipomas caused by TSC are usually found in both kidneys and in most cases they produce no symptoms. However, they can sometimes grow so large that they cause pain or kidney failure. Bleeding from angiomyolipomas may also occur, causing both pain and weakness. If severe bleeding does not stop naturally, there may severe blood loss, resulting in profound anemia and a life-threatening drop in blood pressure, warranting urgent medical attention.
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  BroSun1

  Hi Talesin,

  I am taking a long shot here. Sclerosis is basically a hardening of tissue. Doctors do not know conclusively what causes it. The best lead I have on it and which seems to make sense to me is that it is caused by an excess of Calcium. There is a person who claims to have helped himself by cutting out calcium rich foods and particularly Calcium Supplements. Another area that may be worth researching is the avoidance of foods classified as NIGHTSHADES (potatoes, tomatoes, peppers and brinjal).

  I am not a Doctor but perhaps the above is worth exploring.

  Regards

  Bro Sun
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  talesin

  NN

  Yes, this fits right in, especially the last part about the kidney bleeds. We thought this was quite a 'serious' symptom, this confirms it. Thanks I was having a hard time 'sifting' through all the information (lot on my plate right now).

  BroSun1

  This is good info. I was aware of the nightshades in a general way (can't do the bell peppers myself, and am a cautious eater of tomatoes & potatoes) BUT I did not know of the connection to the hardening/calcium. I will pass this along !!

  This help is great, folks !

  tal
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  orangefatcat

  Like most I am not familiar with this medical condition, however I have found the website for the mayo clinic to be exceedingly helpful with almost every medical condition known.

  www.mayoclinic.com

  Hopefully this is assist you with answers that your are seeking.

  All the best to your friend

  Love Orangefatcat.