amy0223

Seizures and Scleroderma

6 posts in this topic

I am new to the site and I have been reading many of the threads and I have not found anything relatintg seizures to scleroderma. I have had many problems over the years with joint pain, swelling, stiffness in my hands, feet, wrists, and ankles. I have Raynaud's. I have a positive ANA of 1:1280 with a centromere staining pattern. I also have a facial rash that the dermatologist said was "inconclusive". He biopsied a piece of skin on my elbow to see if he could get anything from that, but he said it was a shot in the dark. My fingers are starting to curve a little to the sides and are starting to bend forward when I hold open my hands. I have shooting pains down my arms, especially on the left side right now. It wakes me up when I sleep if my arms are over my head. I was checked for carpal tunnel several years ago. I don't have Sjogren's. I don't have polymyositis. I don't have rheumatoid arthritis, or at least the blood tests don't seem to point that direction. My rheumatologist has me on Plaqeunil and says, let's treat the symptoms because there's no reason to give a diagnosis and tag you with something that will stick with you forever. I just feel like I need to know something. Does anyone else have complex partial or partial seizures with their scleroderma? It seems the more I read that maybe I am heading toward scleroderma instead of lupus?

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Hi Amy ,

 

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.

Margaret

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Seems a little odd that the doctor doesn't want to give you a diagnosis. Perhaps you need a new rheumatologist, preferably a scleroderma expert. It sounds like you have symptoms severe enough to warrant a diagnosis. It is also sort of strange how your insurance works, since they always seem to require a diagnosis (?).

 

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.

 

Craig

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Hello Amy

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.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thank you all for your responses. I am sorry it took so long to get back to you. I have had family visiting since I posted and it has been difficult to sit down and do anything. :) Anyway, I did do the week-long stay at the hospital and they did find the spike in the brain waves overnight. It is coming from the left temporal lobe, which the doctor said is usually harder to pick up on scalp EEG. I had it done two times prior and it had shown nothing. I have nocturnal seizures that are still uncontrolled. I do have migraines that date back more than 10 years. I have white matter spots that were spotted on two MRIs that neurologists thought were related to migraine headaches. I suspected that maybe the Raynaud's could play a role in the seizures. Thank you for bringing that up. I will ask my neurologist when I see her next week. I have been considering looking for a new rheumatologist. I will check out the list of names and see if there is a scleroderma expert in my area that I can see. Thanks for all of your help. Take care!

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I forgot to answer the question about the Plaquenil. Yes, once I got on the Plaquenil, after a couple of months, my strength seemed to increase, the swelling and stiffness went down, and I did feel better. There were some days before I was on it that I couldn't climb the stairs or I had to will myself to get out of bed. There were other days that I would get out of bed and then I would have to call a neighbor for help because I was so weak that I could bearly use my voice to call them. I do have one question, though. I have used the same pharmacy for my medication up until the last 2-3 months and I have been on a generic the whole time. I switched pharmacies and I have been feeling rundown and I have been having seizure problems again. Could it be a switch in the vendors from one pharmacy to another? I am going to ask my neurologist on Monday. Just wondering if anyone else had this happen. I have definitely noticed a difference all of the sudden in how I feel these past few months and that is something that is different. I am hoping that is all that it is. It could just be a flare of my illness, too. I also have gastrointestinal symptoms (diarrhea), trouble swallowing. Thanks!

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