Question 1

what are the tests for tsc?

Accepted Answer

For various organs: Affected by tsc. Brain ct or MRI for brain tumors, eeg for fevers. Kidney ultrasound or ct to check for kidney tumors & cysts & to monitor. Cardiac us if heart tumor suspected and ekg. Visual field eye testing and fundoscopy. Chest ct if tuberous tumor of lung suspected.

Question 2

what are the main symptoms of tsc?

Accepted Answer

Depends on "tubers": Typical acne-form facial skin rash with butterfly distribution. Developmental delay from mild to severe. Headaches and seizures. Kidney/flank pain & hematuria, sometimes with very severe blood loss. Vision changes, blurred &/or double vision.

Question 3

what is the definition or description of: tsc?

Accepted Answer

TSC: In medicine, could be tuberous sclerosis complex, or thiazide sensitive carrier, or trans sodium crocetinate (an oxygen diffusion-enhancing compound).

Question 4

is there any testing needed for siblings of people who have tsc?

Accepted Answer

Perhaps: Tuberous sclerosis complex (tsc) is an autosomal dominant condition. A parent with tsc has a 50-50 chance of passing her tsc mutation to each child. Sometimes the manifestations of tsc are very subtle. To answer your very appropriate question, the best place to start is with a detailed history, family history, physical exam, and possibly brain MRI & renal ultrasound via a clinical geneticist.

Question 5

what is the treatment for tsc?

Accepted Answer

Tuberous sclerosis: Affects many organ systems, primarily brain, kidneys and skin, also can affect heart, eyes & lungs. Treatment is largely conservative & be tailored to individual subject as very mild tsc requires none.Benign brain tumor can cause blockage of brain fluids & may require shunting. Benign kidney tumors often bleed & should be treated conservatively preserving function. Early devt, intervention is good.

Question 6

i have tsc&nf1 (inherited) what's the possibility of getting pregnant? i've tried  multiple times and nothing.

Accepted Answer

Need more info: how were you diagnosed with both TSC and NF1?  Need labs.  Neither are usually associated with reduced fertility, and both are autosomal dominant.  If you were given these diagnoses accurately, you should understand what that means.  Did you get genetics counseling?  I doubt whether you have two similar but very rare disorders simultaneously. Why were you given these diagnoses?

Question 7

does anyone know someone with tuberous sclerosis who has been seizure free? if so then what medications are they taking?

Accepted Answer

: Tuberous sclerosis is a variable condition with some never having seizure triggering anomalies. I have known adults whose only expression of their genes was skin findings. For those who develop seizures, I know of no perfect medication for control. Using a neurologist with a special interest in seizure control would be a good idea.

Question 8

what causes  tuberous sclerosis?

Accepted Answer

Gene mutation: Ts is caused by a gene mutation.You can acquire it from a parent or get it as a new mutation, but the mutation effects every cell in the body. It can be very mild. I knew a college grad who adopted rather than risk passing it & she just had a bit of skin findings. I have treated many who had the soft tumors come up in the brain, kidneys etc. With many pbs.

Question 9

is tuberous sclerosis physically limmiting

Accepted Answer

Depends on severity: It is more appropriately known as tuberous sclerosis complex because it is highly varied in presentations..From simple skin lesions to complex neurological (brain/spinal cord), hearing/vision involvements causing severe disabilties.
Complicated cases will require multispecialties care ...Very complicated..

Question 10

what are visible signs of tuberous sclerosis on an adult or child?

Accepted Answer

Skin lesions: 95% of people with ts have skin manifestations that can be very diverse. Lighter patches of skin that resemble an ash leaf, may be the 1st sign in babies. Other lesions may resemble acne and you see them around nose and cheeks. On back and neck you may find areas of skin that resemble an orange peel. Finger and toenails may have fleshy appearing growths under or around the nails.

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Tsc medication

A member asked:

What are the tests for tsc?

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What are the main symptoms of tsc?

A member asked:

What is the definition or description of: tsc?

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Is there any testing needed for siblings of people who have tsc?

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What is the treatment for tsc?

A member asked:

I have tsc&nf1 (inherited) what's the possibility of getting pregnant? i've tried multiple times and nothing.

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Does anyone know someone with tuberous sclerosis who has been seizure free? if so then what medications are they taking?

A member asked:

What causes tuberous sclerosis?

A member asked:

Is tuberous sclerosis physically limmiting

A member asked:

What are visible signs of tuberous sclerosis on an adult or child?

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