Nutrition Health Chat: Tuesday, Dec. 8th, 5-6 PM Eastern. Learn how vitamins, minerals, and phytonutrients affect your health. Free live Q&A. Join us!
Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Neurology (Expert Forum)
mimicks porphyria?any ideas
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
mimicks porphyria?any ideas
by Alicia__0__0, Apr 02, 1998 12:00AM
Daughter is 19 years old. Since turning 13 she began suffering from severe migraines, lasting weeks. Now takes epival and this controls migraine. When epival does not prevent one she takes clorpromazine. At age 15 began having unexplainable pain where apendix is located , accompained by severe vomitting and constapation. Attacks lasted from 1 day to 21 days. Depression soon followed. Hospitilized numerous times, suicidal, sometimes pscychotic after a few days. No emotional reason found or past traumatic experiences. This depression would come faithfully 1 week before her period. Attack of abdominal pain, vomitting, constapation, began on July 8th. Since this time she has only been pain free for 2 weeks in september. Vomitting is now under control. Started taking seizures in October. 6 Grand mal seizures in one week. EEG showed seizure activity. M.R.I normal.
All scopes , tests and a laproscope normal.Beginning of March she started taking seizures again. Head and neck pull to left side, eyes roll back, trouble breathing, right arm pulls tightly to chest, legs become rigid and shake, sometimes back arches and upper body shake also. Then becomes unresponsive for 20 seconds to 4 minutes.48 hour EEG showed slow brain waves but no seizure activity. Labelled pseudo seizures. Sometimes takes as many as 35 in a 24 hour period. Also suffers from stiff joint and puffiness. Has periods where is almost in a semi coma stage. during these stages vitals are all strong. Blood pressure a little low. Porphyria tests come back normal (urine and stool)
Wondering if you have any other ideas of what this might be?
Thanks for your time....Alicia
--------------------------------------------------------------------------------------------------------------------
Hello Alicia!!
Sounds like your daughter has had a rough time lately. With porphyria ruled out and no evidence of true seizure activity, the most likely explanation for the cluter of symtpoms you describe is a disorder known as somatoform disorder. Although technically a psychiatric illness, its hallmark is the production of severe, very physical symptoms in one or more body systems. All of the symptoms you describe in your daughter are highly compatable with the diagnosis, as headaches, abdominal complaints, and pseudoseizures are all quite typical symptoms for it. Although the possibility of some other extraordinarily rare medical disorder can never be completely ruled out, the repeated negative test results in various organ systems as you describe are again a diagnostic criterion for somatoform disorder. If your daughter has not had formal neuropsychiatric testing (testing that helps sort out neurological and psychiatric disorders), this may be a very useful test in her case, as well as a psychiatric consultation. There are treatments available for the problem, but the patient must be highly motivated for them to succeed. Otherwise, a lifetime of unneccessary, potentially dangerous tests may await your daughter, and produce much bigger medical problems than those they are designed to detect!! If your daughter would be interested in a second neurology opinion and/or a psychiatry consultation at the Cleveland Clinic, our appointment number is 1-800-223-2273. Dr. George Tesar of our psychiatry department is an exceptionally bright, straightforward person who I would highly recommend for a challenging case such as your daughter's. Please remember that the information we provide on the forum is intended for general informational purposes only, and that the actual diagnosis and treatment of your daughter's specific medical condition should be strictly in conjunction with her treating physician(s).
All scopes , tests and a laproscope normal.Beginning of March she started taking seizures again. Head and neck pull to left side, eyes roll back, trouble breathing, right arm pulls tightly to chest, legs become rigid and shake, sometimes back arches and upper body shake also. Then becomes unresponsive for 20 seconds to 4 minutes.48 hour EEG showed slow brain waves but no seizure activity. Labelled pseudo seizures. Sometimes takes as many as 35 in a 24 hour period. Also suffers from stiff joint and puffiness. Has periods where is almost in a semi coma stage. during these stages vitals are all strong. Blood pressure a little low. Porphyria tests come back normal (urine and stool)
Wondering if you have any other ideas of what this might be?
Thanks for your time....Alicia
--------------------------------------------------------------------------------------------------------------------
Hello Alicia!!
Sounds like your daughter has had a rough time lately. With porphyria ruled out and no evidence of true seizure activity, the most likely explanation for the cluter of symtpoms you describe is a disorder known as somatoform disorder. Although technically a psychiatric illness, its hallmark is the production of severe, very physical symptoms in one or more body systems. All of the symptoms you describe in your daughter are highly compatable with the diagnosis, as headaches, abdominal complaints, and pseudoseizures are all quite typical symptoms for it. Although the possibility of some other extraordinarily rare medical disorder can never be completely ruled out, the repeated negative test results in various organ systems as you describe are again a diagnostic criterion for somatoform disorder. If your daughter has not had formal neuropsychiatric testing (testing that helps sort out neurological and psychiatric disorders), this may be a very useful test in her case, as well as a psychiatric consultation. There are treatments available for the problem, but the patient must be highly motivated for them to succeed. Otherwise, a lifetime of unneccessary, potentially dangerous tests may await your daughter, and produce much bigger medical problems than those they are designed to detect!! If your daughter would be interested in a second neurology opinion and/or a psychiatry consultation at the Cleveland Clinic, our appointment number is 1-800-223-2273. Dr. George Tesar of our psychiatry department is an exceptionally bright, straightforward person who I would highly recommend for a challenging case such as your daughter's. Please remember that the information we provide on the forum is intended for general informational purposes only, and that the actual diagnosis and treatment of your daughter's specific medical condition should be strictly in conjunction with her treating physician(s).
