Seizures and Scleroderma
Posted 29 August 2010 - 03:25 PM
Posted 30 August 2010 - 02:34 AM
Welcome to the group. I wanted to respond to the seizure question and tell you what happened to my son. He was diagnosed with sine Scleroderma, then switched to UCTD, almost 4 years ago, at the age of 18. One year later, they said he had a seizure (supposedly backed up by a single EEG) and was put on seizure meds. For 18 months, he went through many meds, all causing wicked side affects. He finally went into the hospital and had a week long EEG study done. It found that he was having non-electrical, 'non-epileptic' seizures, also called pseudo seizures. They are not FAKE seizures....as one resident suggested. They don't know what causes them, but they do appear like real absence/partial/even grand mal seizures. Before you submit to any seizure meds, please have the week long study done in an Epilepsy center. Meds do nothing for pseudo seizures. doctors don't know what brings them on or why they happen.
Take care, Everyone.
Posted 30 August 2010 - 03:28 AM
Regarding seizures, I have had grand mal seizures (very easily controlled) since age 15 (40 years ago). My first sclero symptom (Raynaud's) was 7 years later. Since my seizure diagnosis was always "idiopathic" (meaning that they could not find a cause), I have always suspected it to be related to sclero - possibly of some sort vascular cause, like Raynaud's. In addition, many years ago a found, in a book titled "The Aetiology of Epilepsy", I read a statement that there is a high concurrence of epilepsy with Raynaud's (meaning that Raynaud's patients have far more epilepsy than the the general population).
In addition, my father, who also had slow-onset scleroderma, suffered from migraine headaches, which also have vascular causation, much like Raynaud's. I suspected a relation.
Once again, more examples of how unique each case of this disease can be to the individual.
Posted 30 August 2010 - 08:25 AM
Welcome to the forum! We have an article about Hydroxychloroquine (Plaquenil) Protects Lupus Patients from Developing Seizures. Interesting that your rheumatologist has prescribed Plaquinil for you in the absence of a diagnosis, has it had any effect on your seizures?
Seizures have been associated with some types of scleroderma such as linear en coup de sabre but not normally diffuse of limited. They can be associated with lupus, see WebMed or
emedecine.medscape which states that •Seizures are already known to occur in 14-25% of patients with lupus compared with 0.5-1% in the general population.
Of course I am not medically trained and can't say whether you have lupus, scleroderma or that either are/are not the cause of your seizures, all I can do is show you some of the information we have available to you.
If you want to consider seeing a scleroderma expert as mentioned by Craig we have a list of them worldwide.
Take care and keep posting.
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Posted 13 September 2010 - 03:43 AM
Posted 13 September 2010 - 04:46 AM