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Have Autonomic Nervous System Dysfunction. Family History Of Lupus, Diabetes And Ra. Effective Cure?
Question: I need a rheumatologist to help me figure out what autoimmune disorder I may have so that I know what to get tested for. I have chiari malformation type one and a dural venous fistula but my neuro and my pcp think those are secondary and not primary of my symptoms.
First--- I will list all the things that are high consistently
Potassium---hyperkalemia level 6.1
Sodium
Calcium
Immunology Panel
ANA----1.7 units but a negative striated muscle Ab and a 0.00 AChR Muscle Bind Ab ; TPO 6.1 and AChR Muscle Mod Ab of 6%
Endocrine and Hematology are normal
Symptoms- Had autonomic testing done and bp never returned to baseline on tilt test and I have hyperhidrosis in my hands and feet but produced 0.00 sweat in forearm testing with electrodes
My blood pressure has fluctuated high to low with low level pulses ranging from 160 HI to 52 LOW
Had epilepsy monitoring done and was recorded for non epileptic myoclonic seizures; Facial ptosis present without determinant etiology on occasion, positive for migraine with Aura; Visual disturbances in low levels of light---- occasional nystagmus, diagnosed with Generalized anxiety disorder, normal opthamology, positive Tullio on right side in ORL testing, some intermittent benign paroxysmal positional vertigo, negative for dehiscent canal
Episodes first started with autonomic nervous system dysfunction---- smooth muscles in stomach were severely spasming, whooshing noise in head when blood pressure is low to normal with high pulse or bp high with low pulse rates
Family history of Crohns disease, lupus, diabetes, and rheumatoid arthritis
Self history---chronic heavy mensis on a bi weekly basis- had ablation done for that, partially prolapsed uterus, tubal ligation done, past history of cysts in ovaries, precancer in uterus and cervix however, normal paps since, have had several TBI's, S curvature of back and neck with herniation in C5 and 6
Had blood test done for Lupus type A, rheumatoid arthritis and fibromyalgia and all were negative
I have also been shown to produce high levels of cortisol and adrenaline, experienced a 20 lb weight loss in one month April a yr ago. Have normal T4 levels and I do not sleep. I am currently on 75 mg Amitryptaline daily for migraine control and 100 mg pristiq for anxiety. Was on ambien but ambien is non effective on keeping me asleep. Approximate hours of sleep are 2-3 on Ambien. On Lunesta was having trouble falling asleep but staying asleep once falling asleep for only 4-5 hrs. At a loss. Have been dealing with this for 6 months. Someone please help me figure out what is wrong with me.
First--- I will list all the things that are high consistently
Potassium---hyperkalemia level 6.1
Sodium
Calcium
Immunology Panel
ANA----1.7 units but a negative striated muscle Ab and a 0.00 AChR Muscle Bind Ab ; TPO 6.1 and AChR Muscle Mod Ab of 6%
Endocrine and Hematology are normal
Symptoms- Had autonomic testing done and bp never returned to baseline on tilt test and I have hyperhidrosis in my hands and feet but produced 0.00 sweat in forearm testing with electrodes
My blood pressure has fluctuated high to low with low level pulses ranging from 160 HI to 52 LOW
Had epilepsy monitoring done and was recorded for non epileptic myoclonic seizures; Facial ptosis present without determinant etiology on occasion, positive for migraine with Aura; Visual disturbances in low levels of light---- occasional nystagmus, diagnosed with Generalized anxiety disorder, normal opthamology, positive Tullio on right side in ORL testing, some intermittent benign paroxysmal positional vertigo, negative for dehiscent canal
Episodes first started with autonomic nervous system dysfunction---- smooth muscles in stomach were severely spasming, whooshing noise in head when blood pressure is low to normal with high pulse or bp high with low pulse rates
Family history of Crohns disease, lupus, diabetes, and rheumatoid arthritis
Self history---chronic heavy mensis on a bi weekly basis- had ablation done for that, partially prolapsed uterus, tubal ligation done, past history of cysts in ovaries, precancer in uterus and cervix however, normal paps since, have had several TBI's, S curvature of back and neck with herniation in C5 and 6
Had blood test done for Lupus type A, rheumatoid arthritis and fibromyalgia and all were negative
I have also been shown to produce high levels of cortisol and adrenaline, experienced a 20 lb weight loss in one month April a yr ago. Have normal T4 levels and I do not sleep. I am currently on 75 mg Amitryptaline daily for migraine control and 100 mg pristiq for anxiety. Was on ambien but ambien is non effective on keeping me asleep. Approximate hours of sleep are 2-3 on Ambien. On Lunesta was having trouble falling asleep but staying asleep once falling asleep for only 4-5 hrs. At a loss. Have been dealing with this for 6 months. Someone please help me figure out what is wrong with me.
Thank you very much for the query,
I have noted your complaints and gone through the lists of data provided.
with the limited clinical data, let me address your problem as follows
1. I think that your primary problem is related to autonomic neuropathy and one has to establish the cause. Diabetes and impaired fasting glucose is the most common cause. Other autoimmune diseases that can produce the same problems are sjogren's syndrome (autoimmune condition) and systemic lupus. Amylodosis can also manifests like this. From the tests done, i understand that you donot have diabetes . You can test for sjogeren syndrome (anti SSA and SSB antibody) and anti-DsDNA. These are specific for sjogren syndrome and systemic lupus.Even though the TPO and AchR are positive (depends upon the lab value and you have not mentioned the reference in the lab done) are of concerns, your clinical data does not match with that.
2. High levels of cortisol, adrenalin, high potassium can be due to a endocrine tumor/hyperplasia of adrenal gland. This can be picked by endoscopic ultrasound/ CT scan. If negative, dexamathasone suppression test may help.
3. Regarding the migraine, non-epileptic seizure and insomnia- i think there is a strong possibility of anxiety/primary psychiatric illness. This is evidenced in the investigations that non-epileptic seizures have been captured during monitoring. Insomnia can be helped by proper sleep hygiene (go to bed at a particular time, avoid coffee at night, donot keep watch in bed-room etc). Migraine may be treated with rest, relaxation, avoid the precipitating factor and medicines like amitriptiline, valproate, topiramate. etc. One important think to note that you need a detailed evaluation by psychiatrist.
I advise you to get evaluated in a UNIVERSITY-TEACHING MEDICAL CENTRE where a team of doctors(Neurologist, psychiatrist, rheumatologist, neurosurgeon) will discuss the case and address in detail. A detailed clinical evaluation by a neurologist is of paramount importance in your case. If no cause is found, i think a biopsy of a nerve may help.
Hope i have addressed your query
Please get back to me in case you have further query
Best wishes
I have noted your complaints and gone through the lists of data provided.
with the limited clinical data, let me address your problem as follows
1. I think that your primary problem is related to autonomic neuropathy and one has to establish the cause. Diabetes and impaired fasting glucose is the most common cause. Other autoimmune diseases that can produce the same problems are sjogren's syndrome (autoimmune condition) and systemic lupus. Amylodosis can also manifests like this. From the tests done, i understand that you donot have diabetes . You can test for sjogeren syndrome (anti SSA and SSB antibody) and anti-DsDNA. These are specific for sjogren syndrome and systemic lupus.Even though the TPO and AchR are positive (depends upon the lab value and you have not mentioned the reference in the lab done) are of concerns, your clinical data does not match with that.
2. High levels of cortisol, adrenalin, high potassium can be due to a endocrine tumor/hyperplasia of adrenal gland. This can be picked by endoscopic ultrasound/ CT scan. If negative, dexamathasone suppression test may help.
3. Regarding the migraine, non-epileptic seizure and insomnia- i think there is a strong possibility of anxiety/primary psychiatric illness. This is evidenced in the investigations that non-epileptic seizures have been captured during monitoring. Insomnia can be helped by proper sleep hygiene (go to bed at a particular time, avoid coffee at night, donot keep watch in bed-room etc). Migraine may be treated with rest, relaxation, avoid the precipitating factor and medicines like amitriptiline, valproate, topiramate. etc. One important think to note that you need a detailed evaluation by psychiatrist.
I advise you to get evaluated in a UNIVERSITY-TEACHING MEDICAL CENTRE where a team of doctors(Neurologist, psychiatrist, rheumatologist, neurosurgeon) will discuss the case and address in detail. A detailed clinical evaluation by a neurologist is of paramount importance in your case. If no cause is found, i think a biopsy of a nerve may help.
Hope i have addressed your query
Please get back to me in case you have further query
Best wishes
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
The migraines are specific to pressure issues from the XXXXXXX chiari syndrome in my brain and the amitryptaline helps suppress the chemicals that are being overproduced. I have tried yoga, meditation, exercise, tea, baths, soothing scents and music. It does nothing for me. I cannot sleep at night. Regardless of what I do. CTs and MRI's done on my brain have shown a DVF and XXXXXXX chiari. The blood tests have been done to check for lupus, rheumatoid arthritis, myasthenia gravis, diabetes, blood chemistry. The seizures do seem to be triggered by fatigue but it is not relative to the anxiety. I have had a few psych and neuropsych tests done. Once again I have been diagnosed with generalized anxiety disorder. The anxiety is due to the fact I am always go go go go go and physiologically cannot calm down and relax. The process of elimination led me to believe due to the interconnection of symptoms as well as the high levels of minerals and hematocrit, that it may be undiagnosed SLE as well. Thanks
Thanks for the feed back
I agree that the headache (so called migraine) could be related to DVF and XXXXXXX That's why i have mentioned that a re-evaluation regarding the status of this problem is warranted. There are several procedures available to deal this and your neurosurgeon will guide you.
A test for Sjogren syndrome is needed in your case and I advise you to the get the antibodies test done as mentioned in my previous reply.
Both true and non-epileptic seizures can be precipitated by anxiety and stress. The gold standard test to recognise this problem has already been done in you.
If your Ds DNA is negative, the chance of having lupus is low.
Once again I strongly advise you to get evaluated at a UNIVERSITY-TEACHING MEDICAL CENTRE. This will clarify the issue.
Let me know if you need further clarifications.
Best wishes
I agree that the headache (so called migraine) could be related to DVF and XXXXXXX That's why i have mentioned that a re-evaluation regarding the status of this problem is warranted. There are several procedures available to deal this and your neurosurgeon will guide you.
A test for Sjogren syndrome is needed in your case and I advise you to the get the antibodies test done as mentioned in my previous reply.
Both true and non-epileptic seizures can be precipitated by anxiety and stress. The gold standard test to recognise this problem has already been done in you.
If your Ds DNA is negative, the chance of having lupus is low.
Once again I strongly advise you to get evaluated at a UNIVERSITY-TEACHING MEDICAL CENTRE. This will clarify the issue.
Let me know if you need further clarifications.
Best wishes
Above answer was peer-reviewed by :
Dr. Prasad
Answered by
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