Becky, Volunteer Mentor | @becsbuddy | May 13 9:31am
@dancing1 Good morning! Do you have any specific concerns about the tilt test? What symptoms have you had that made the doctor wan the test? https://www.mayoclinic.org/tests-procedures/tilt-table-test/about/pac-20395124
You mentioned that you have other autoimmune diseases—are they under control?
I hope some of the members will see your discussion and respond. Im going to search through the Mayo Clinic discussions to see if anyone else mentions a tilt table test
@dancing1 Good morning! Do you have any specific concerns about the tilt test? What symptoms have you had that made the doctor wan the test? https://www.mayoclinic.org/tests-procedures/tilt-table-test/about/pac-20395124
You mentioned that you have other autoimmune diseases—are they under control?
I hope some of the members will see your discussion and respond. Im going to search through the Mayo Clinic discussions to see if anyone else mentions a tilt table test
@dancing1
I might need to get a tilt table test. I have small fiber neuropathy (SFN) and cardiolipid autoantibodies which show possibility for anti phospholipid syndrome (APS). APS is a higher risk for clotting. SFN can affect arteries/veins/capillaries and heart/blood flow. I am not aware of side effects of the tilt table test other than moving your body in positions to check vascular health/response to pressure changes.
@dancing1
I might need to get a tilt table test. I have small fiber neuropathy (SFN) and cardiolipid autoantibodies which show possibility for anti phospholipid syndrome (APS). APS is a higher risk for clotting. SFN can affect arteries/veins/capillaries and heart/blood flow. I am not aware of side effects of the tilt table test other than moving your body in positions to check vascular health/response to pressure changes.
@artemis1886
How are you being treated for your CAN? How were you diagnosed with severe axonal sensorimotor polyneuropathy (what were your symptoms) and how are you being treated? I think I may have CAN in addition to confirmed SFN but not sure about the severe ASP. I have severe cervical/lumbar congenital spinal stenosis and degenerative disc disease and pain, weakness, numbness, in arms/hands and legs. I also experience extreme fatigue and not sure if caused by long COVID or Epstein Barr virus/chronic fatigue syndrome.
The test was semipainless. It hurt my hip. I have had four hip replacement surgeries, actebulum and public ramus fracture. I had it for dizziness and irregular heart beat (bradycardia,tachycardia).
I passed out and it was over. No drugs were given to induce fainting. It lasted less than 30 minutes. The longest part for me was getting strapped in and trying to get comfortable. They gave me Phenergan through the IV for nausea. I get nauseated really easy from gastroparsis and stomach ulcers.
@artemis1886
How are you being treated for your CAN? How were you diagnosed with severe axonal sensorimotor polyneuropathy (what were your symptoms) and how are you being treated? I think I may have CAN in addition to confirmed SFN but not sure about the severe ASP. I have severe cervical/lumbar congenital spinal stenosis and degenerative disc disease and pain, weakness, numbness, in arms/hands and legs. I also experience extreme fatigue and not sure if caused by long COVID or Epstein Barr virus/chronic fatigue syndrome.
I have tested positive for four years for the Epstein Barr virus. I am now being tested for CIDP. Which my understanding is advanced neuropathy.
CAN-started immediately after my second covid shot and I took Moderna through the military before the public took the shots. We are stationed in Germany my husband works for the Department of Defense. My youngest adult child has congenital heart disease he has an ICD (pacemaker/ defibrillator). My heart started stopping in my sleep. Then would jump and my husband could feel it. He felt my body jump. No history of sleep apnea. I had a one month Holter monitor test showing my heart rate too slow or too fast. Not eligible for ICD because due to the neuropathy I do not have the nerves to shock or pace the heart back into rhythm. Mine is autoimmune. Being a nurse I knew what this meant. When the electrophysiologist gave me the results I told him he did not know what he was talking about. The electrophysiologist said I had 8 years left too live and four of them are gone. I told my neurologist and he told me the gold standard for verification is biopsy for small fiber neuropathy. Needless to say it came back positive and we repeated last year and the SFN is worse. I had to go back to c the electrophysiologist to apologize. Treatment truthfully none. The SFN also affects your organs -gastroparsis,bladder and so forth. We tried metoprolol succinate it raised my glucose levels, swelling, and caused problems with my kidneys. Discontinued . We are looking at IVIG therapy it takes at least six months for symptoms to get better. We are also looking at DMADS for the autoimmune portion. I was on IVIG therapy from 10-18 when I fell off my parents insurance. Diabetes does not run in my family. My ANA, sed rate, CRP and compliment C all elevated showing autoimmune problems. I test negative blood work for lupus and other autoimmune disorders. Rheumatoid Arthritis runs in my family. My grandmother, aunt, mother nephew and sister have it. The doctors are also we looking at a spinal tap it can show autoimmune and other problems. The new neuromuscular neurologist is repeating the EMG/nerve conduction test for the CIDP because it is an autoimmune form of neuropathy.
Chronic inflammatory demylinating disease -CIDP
Check my postings. I don't feel my hands constantly cutting them and getting stitches. I do not feel my feel or legs. I wear compression hose because my legs constantly swell up. I have problems with nausea and vomiting due to the gastroparsis. I also have really bad tremors and my husband has to cut up my food and hold the glass for me to drink. That's the motor neuropathy.
@artemis1886
How are you being treated for your CAN? How were you diagnosed with severe axonal sensorimotor polyneuropathy (what were your symptoms) and how are you being treated? I think I may have CAN in addition to confirmed SFN but not sure about the severe ASP. I have severe cervical/lumbar congenital spinal stenosis and degenerative disc disease and pain, weakness, numbness, in arms/hands and legs. I also experience extreme fatigue and not sure if caused by long COVID or Epstein Barr virus/chronic fatigue syndrome.
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@dancing1 Good morning! Do you have any specific concerns about the tilt test? What symptoms have you had that made the doctor wan the test?
https://www.mayoclinic.org/tests-procedures/tilt-table-test/about/pac-20395124
You mentioned that you have other autoimmune diseases—are they under control?
I hope some of the members will see your discussion and respond. Im going to search through the Mayo Clinic discussions to see if anyone else mentions a tilt table test
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1 ReactionThank you I’ve heard it has some side effects and I’m very weak not thinking now is a good time.
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1 Reaction@dancing1 I can understand your reluctance to having the test, but if your doctor wants you to have it, you really need to go ahead with it. There will be enough personnel to carefully watch you.
https://www.verywellhealth.com/tilt-table-testing-1745418#:~:text=A%20tilt%20table%20test%20is%20not%20painful%20but%20can%20be,Loss%20of%20consciousness
I think you will be fine. The staff will take good care of you. What is your biggest concern?
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3 ReactionsThank you. I will.
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1 Reaction@dancing1
I might need to get a tilt table test. I have small fiber neuropathy (SFN) and cardiolipid autoantibodies which show possibility for anti phospholipid syndrome (APS). APS is a higher risk for clotting. SFN can affect arteries/veins/capillaries and heart/blood flow. I am not aware of side effects of the tilt table test other than moving your body in positions to check vascular health/response to pressure changes.
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5 ReactionsThe tilt table testing helped diagnose my CAN-cardiac autonomic neuropathy
I have SFN
Severe axonal sensorimotor polyneuropathy
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3 Reactions@artemis1886
How are you being treated for your CAN? How were you diagnosed with severe axonal sensorimotor polyneuropathy (what were your symptoms) and how are you being treated? I think I may have CAN in addition to confirmed SFN but not sure about the severe ASP. I have severe cervical/lumbar congenital spinal stenosis and degenerative disc disease and pain, weakness, numbness, in arms/hands and legs. I also experience extreme fatigue and not sure if caused by long COVID or Epstein Barr virus/chronic fatigue syndrome.
The test was semipainless. It hurt my hip. I have had four hip replacement surgeries, actebulum and public ramus fracture. I had it for dizziness and irregular heart beat (bradycardia,tachycardia).
I passed out and it was over. No drugs were given to induce fainting. It lasted less than 30 minutes. The longest part for me was getting strapped in and trying to get comfortable. They gave me Phenergan through the IV for nausea. I get nauseated really easy from gastroparsis and stomach ulcers.
I have tested positive for four years for the Epstein Barr virus. I am now being tested for CIDP. Which my understanding is advanced neuropathy.
CAN-started immediately after my second covid shot and I took Moderna through the military before the public took the shots. We are stationed in Germany my husband works for the Department of Defense. My youngest adult child has congenital heart disease he has an ICD (pacemaker/ defibrillator). My heart started stopping in my sleep. Then would jump and my husband could feel it. He felt my body jump. No history of sleep apnea. I had a one month Holter monitor test showing my heart rate too slow or too fast. Not eligible for ICD because due to the neuropathy I do not have the nerves to shock or pace the heart back into rhythm. Mine is autoimmune. Being a nurse I knew what this meant. When the electrophysiologist gave me the results I told him he did not know what he was talking about. The electrophysiologist said I had 8 years left too live and four of them are gone. I told my neurologist and he told me the gold standard for verification is biopsy for small fiber neuropathy. Needless to say it came back positive and we repeated last year and the SFN is worse. I had to go back to c the electrophysiologist to apologize. Treatment truthfully none. The SFN also affects your organs -gastroparsis,bladder and so forth. We tried metoprolol succinate it raised my glucose levels, swelling, and caused problems with my kidneys. Discontinued . We are looking at IVIG therapy it takes at least six months for symptoms to get better. We are also looking at DMADS for the autoimmune portion. I was on IVIG therapy from 10-18 when I fell off my parents insurance. Diabetes does not run in my family. My ANA, sed rate, CRP and compliment C all elevated showing autoimmune problems. I test negative blood work for lupus and other autoimmune disorders. Rheumatoid Arthritis runs in my family. My grandmother, aunt, mother nephew and sister have it. The doctors are also we looking at a spinal tap it can show autoimmune and other problems. The new neuromuscular neurologist is repeating the EMG/nerve conduction test for the CIDP because it is an autoimmune form of neuropathy.
Chronic inflammatory demylinating disease -CIDP
Check my postings. I don't feel my hands constantly cutting them and getting stitches. I do not feel my feel or legs. I wear compression hose because my legs constantly swell up. I have problems with nausea and vomiting due to the gastroparsis. I also have really bad tremors and my husband has to cut up my food and hold the glass for me to drink. That's the motor neuropathy.
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4 ReactionsSigns and symptoms of EBV
Fatigue
Fever
Lack of appetite
Rash
Sore throat
Swollen glands in the neck
Weak and sore muscles
Enlarged spleen and liver
EBV is considered highly contagious
https://www.webmd.com/a-to-z-guides/epstein-barr-virus
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3 Reactions