Experiences with

Tuberous sclerosis

Hello, one of our members in our group has been diagnosed with both Scleroderma and Multiple Sclerosis. Is there anyone out there who also has this dire combination who she can chat with? Thank you Heather

~No l dont have this, but we never do posts on PPMS. (I have been told🤣)~ ~Please Let Me Know What Your Thoughts Are!~ Per... https://my.clevelandclinic.org/health/diseases/14202-primary-progressive-multiple-sclerosis-ppms What is primary progressive multiple sclerosis? Multiple sclerosis (MS)

Hi my name is Danny and I’ve been married for 30 years to a wonderful supportive wife. I’ve been dealing with multiple sclerosis since is early as 2004, but was not diagnosed until 2009. I have been missed diagnosed twice between 2000 and 2009. Had a lumbar fusion in 2006 of my L4 L5 S1. Found in 2009

Hi my epilepsy is caused by tuberous sclerosis (TSC). Just wondering if anyone else has it? Or knows anyone associated with it? Here is a link: https://www.nhs.uk/conditions/tuberous-sclerosis/#:~:text=Tuberous%20sclerosis%2C%20also%20known%20as,%2C%20heart%2C%20eyes%20and%20lungs.

Hiya, tuberous sclerosis causes my epilepsy just wondering if anyone else is in a similar situation, or knows anyone with TSC ? 😊

Because of its effect on the mTOR pathway, there may be a role for metformin in slowing or reversing growth of life-threatening hamartomas in tuberous sclerosis complex.

FST also activated the mTOR repressor TSC2 (tuberous sclerosis 2), commonly associated with inhibition of Akt and activation of AMPK [155]. TRAIL plays an important role in the defense against tumor cells.

Hi my daughter has tuberous sclerosis and epilepsy. She has just been told by a consultant neurologist that a seizure captured on camera while having an EEG was not epileptic as the EEG was normal and because the seizure looked non epileptic. is it possible to have normal EEG during a seizure?

Tuberous sclerosis ones in a home now they are 18 next year. I've always been there for her. And I've seen her 1st since marks out of hospital 4 months ago. Am i wrong to not feel bad coz i can't split myself in half.

Genetic Alliance UK in collaboration with the Tuberous Sclerosis Association and Association for Glycogen Storage Disorders recently submitted a petition to the National Assembly for Wales.

my son has Epilepsy because of his Tuberous Sclerosis, he had seizures since 9months old. He has had many and varied AEDs but his Epilepsy is very hard to manage. Recently he has had very long episodes of unconsciousness, up to 24hrs.

Here's a fascinating article about off-label use of Campath (from Cambridge Pathology), a monoclonal antibody developed for CLL which was repackaged as Lemtrada, (also known as Campath-1H or alemtuzumab) for the treatment of Multiple Sclerosis. It was approved for that purpose by European regulators