Since they can’t figure out what autoimmune disorder that I have SSID ignored my autoimmune disorder. Depression is a whole new subject. I am going to try to say this nice please do not misinterpret. SSID sent me to one of their doctors. It was a doctor from India that I had problems understanding. She told me she would ask the questions and my answers were yes or no. As far as my tremors she said exercises would take care f them. Put your area straight in front of you and then cross them over your chest. That will solve my tremors. I asked her why I was not seeing a neurological doctor and she told me SSID did not consider it important that I see a neurologist when my problems are neurological.
Since they can’t figure out what autoimmune disorder that I have SSID ignored my autoimmune disorder. Depression is a whole new subject. I am going to try to say this nice please do not misinterpret. SSID sent me to one of their doctors. It was a doctor from India that I had problems understanding. She told me she would ask the questions and my answers were yes or no. As far as my tremors she said exercises would take care f them. Put your area straight in front of you and then cross them over your chest. That will solve my tremors. I asked her why I was not seeing a neurological doctor and she told me SSID did not consider it important that I see a neurologist when my problems are neurological.
Area=arms
To me she had a loose screw.
My attorney just called. I received my second denial Jan 5. They are trying to get me a court date. I can’t believe it’s been two years.
@artemis1886
I have also had issues with swallowing and speaking at times. I was going to apply for unemployment when I first lost my job but didn’t because I didn’t think I could work.
@artemis1886
If you were denied, I now worry about being denied. I have dizziness and balance issues plus have fallen and broke my foot. I have difficulty concentrating/thinking and have extreme fatigue/weakness. How did you find your attorney to help you with an appeal? I was denied a separate surgery and paid out of pocket so also want to legally pursue an appeal (would be my 3rd). The health insurance says the surgery wasn’t “medically necessary.” They just want to deny claims and hope you go away.
I live in Texas and the attorney is in Florida but practices everywhere in the US.
1-800-800-3332.
I have had attorney since the beginning my neurologist said I would need one. He died in 2022 in his sleep. He said I more than qualified for disability. I probably would have gotten it had he been alive. I had seen him since 2002.
@artemis1886
I have also had issues with swallowing and speaking at times. I was going to apply for unemployment when I first lost my job but didn’t because I didn’t think I could work.
@artemis1886
I was in my last job for 10 years but have worked over 34 years (currently 54). I don’t know what I am going to do if I get denied for disability since I don’t think I will be able to work. COBRA insurance coverage is so ridiculously expensive but I need coverage for my son and me due to medications needed, tests, etc.
I can not imagine going through this single. I just turned 62. Make sure you applied for said and ssi. My youngest was born with congential heart disease and has decided to refuse all medical care. He was supposed to have a carduac catg in FEB. We are from Texas and my husband currently works in Germany. I think when we come back we will be in Colorado. I always wake up at this time in so much pain that I can't get back to sleep.
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.
My 23 yr old son suffers from SFN (some LFN). You mentioned you have tremors. My son has head to toe tremors that are getting worse over time. They diagnosed it as “tremors” but never give an exact reason why. He shakes so bad…especially when he is concentrating on something like trying to pour into a cup, writing with a pen and also when his adrenaline kicks in like watching an action movie or playing a video game…is that what you experience with the motor neuropathy? He also has Gastroparesis, dysmotilty in his esophagus, stomach & colon, POTS, Dysautonomia, Tachycardia/Bradycardia, Hypertension, Autoimmune disease, systemic Eosinophilic disease & Systemic Mastocytosis…He’s had multiple rounds of IVIG when he was in his teens as well. Currently he’s been experiencing severe pain in his lower back/spine for over a year and can hardly walk anymore (uses a wheelchair & walker). X-Ray, MRI & CT scans show nothing is structurally wrong. They say it could be his nerves but they don’t really know. I’m desperate to find answers to help him.
We are currently trying to get him to Mayo for treatment.
My 23 yr old son suffers from SFN (some LFN). You mentioned you have tremors. My son has head to toe tremors that are getting worse over time. They diagnosed it as “tremors” but never give an exact reason why. He shakes so bad…especially when he is concentrating on something like trying to pour into a cup, writing with a pen and also when his adrenaline kicks in like watching an action movie or playing a video game…is that what you experience with the motor neuropathy? He also has Gastroparesis, dysmotilty in his esophagus, stomach & colon, POTS, Dysautonomia, Tachycardia/Bradycardia, Hypertension, Autoimmune disease, systemic Eosinophilic disease & Systemic Mastocytosis…He’s had multiple rounds of IVIG when he was in his teens as well. Currently he’s been experiencing severe pain in his lower back/spine for over a year and can hardly walk anymore (uses a wheelchair & walker). X-Ray, MRI & CT scans show nothing is structurally wrong. They say it could be his nerves but they don’t really know. I’m desperate to find answers to help him.
We are currently trying to get him to Mayo for treatment.
A neurologist does an EMG/nerve conduction test to test for neuropathy.
Yes, the motor neuropathy causes tremors. It’s misleading when you google motor neuropathy it says movement disorder to me they need to be clearer on that.
The SFN is confirmed by three biopsies. I had mine repeated and the SFN has became worse.
The cardiac autonomic neuropathy causes bradycardia/tachycardia I did a one month holter monitor test and was sent to an electrophysiologist then had a tilt table test. Once diagnosed they give you 8 years to live. The autonomic neuropathy affects the bladders, gastroparesis and so forth.
They are now testing me for CIDP. Which is an autoimmune type neuropathy and some other things by spinal tap.
A neurologist does an EMG/nerve conduction test to test for neuropathy.
Yes, the motor neuropathy causes tremors. It’s misleading when you google motor neuropathy it says movement disorder to me they need to be clearer on that.
The SFN is confirmed by three biopsies. I had mine repeated and the SFN has became worse.
The cardiac autonomic neuropathy causes bradycardia/tachycardia I did a one month holter monitor test and was sent to an electrophysiologist then had a tilt table test. Once diagnosed they give you 8 years to live. The autonomic neuropathy affects the bladders, gastroparesis and so forth.
They are now testing me for CIDP. Which is an autoimmune type neuropathy and some other things by spinal tap.
Thank you for sharing, I hope you continue to get more answers and help! It sounds like you have a lot of knowledge about neuropathies! It’s very frustrating and confusing. When the neuropathy is not directly related to diabetes, it seems like it’s very hard to treat. I’m trying to understand more to help my 23 yr old son. He has seen many Neurologists & was diagnosed specifically with Autonomic Neuropathy, Peripheral Sensory Neuropathy, small fiber neuropathy, limited large fiber sensory dysfunction, compressive neuropathy in his hands, ulnar Neuropathy (elbows), carpal tunnel syndrome & frozen shoulders. His BP is high laying down 152/82 but he has an abnormally low resting heart rate (low 40’s) Sometimes it goes into the low 30’s when we are in the hospital. Then the monitors will show bradycardia & tachycardia all at the same time…it’s very scary to witness. Movement disorder Neurologist prescribed him midodrine for the tremors and the Autonomic dysfunction neurologist prescribed him propanolol for the high BP….but we are concerned of the side effects taking the two drugs together. He has to drink 130 oz of water a day, add extra salt to food, low impact exercise to keep the blood vessels open and blood flowing. He used to be on Florinef. He would faint a lot and have a lot of black out vision episodes…he’s come a long way since those days. Still gets very dizzy and faint but is able to catch it before fainting. Still experiencing the vision problems…lots of times he describes it as “shaky” vision now…the room shakes. I would like to ask for further heart testing as that is a very big concern! Thank you for sharing about your heart monitor testing…I think my son needs to do that test again.
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Since they can’t figure out what autoimmune disorder that I have SSID ignored my autoimmune disorder. Depression is a whole new subject. I am going to try to say this nice please do not misinterpret. SSID sent me to one of their doctors. It was a doctor from India that I had problems understanding. She told me she would ask the questions and my answers were yes or no. As far as my tremors she said exercises would take care f them. Put your area straight in front of you and then cross them over your chest. That will solve my tremors. I asked her why I was not seeing a neurological doctor and she told me SSID did not consider it important that I see a neurologist when my problems are neurological.
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2 ReactionsArea=arms
To me she had a loose screw.
My attorney just called. I received my second denial Jan 5. They are trying to get me a court date. I can’t believe it’s been two years.
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Hug
2 Reactions@artemis1886
I have also had issues with swallowing and speaking at times. I was going to apply for unemployment when I first lost my job but didn’t because I didn’t think I could work.
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1 ReactionI live in Texas and the attorney is in Florida but practices everywhere in the US.
1-800-800-3332.
I have had attorney since the beginning my neurologist said I would need one. He died in 2022 in his sleep. He said I more than qualified for disability. I probably would have gotten it had he been alive. I had seen him since 2002.
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3 ReactionsI didn’t because I knew I could no longer apply for jobs. I had my job for 20 plus years before I left.
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2 Reactions@artemis1886
I was in my last job for 10 years but have worked over 34 years (currently 54). I don’t know what I am going to do if I get denied for disability since I don’t think I will be able to work. COBRA insurance coverage is so ridiculously expensive but I need coverage for my son and me due to medications needed, tests, etc.
-
Like -
Helpful -
Hug
1 ReactionI can not imagine going through this single. I just turned 62. Make sure you applied for said and ssi. My youngest was born with congential heart disease and has decided to refuse all medical care. He was supposed to have a carduac catg in FEB. We are from Texas and my husband currently works in Germany. I think when we come back we will be in Colorado. I always wake up at this time in so much pain that I can't get back to sleep.
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Like -
Helpful -
Hug
2 ReactionsMy 23 yr old son suffers from SFN (some LFN). You mentioned you have tremors. My son has head to toe tremors that are getting worse over time. They diagnosed it as “tremors” but never give an exact reason why. He shakes so bad…especially when he is concentrating on something like trying to pour into a cup, writing with a pen and also when his adrenaline kicks in like watching an action movie or playing a video game…is that what you experience with the motor neuropathy? He also has Gastroparesis, dysmotilty in his esophagus, stomach & colon, POTS, Dysautonomia, Tachycardia/Bradycardia, Hypertension, Autoimmune disease, systemic Eosinophilic disease & Systemic Mastocytosis…He’s had multiple rounds of IVIG when he was in his teens as well. Currently he’s been experiencing severe pain in his lower back/spine for over a year and can hardly walk anymore (uses a wheelchair & walker). X-Ray, MRI & CT scans show nothing is structurally wrong. They say it could be his nerves but they don’t really know. I’m desperate to find answers to help him.
We are currently trying to get him to Mayo for treatment.
-
Like -
Helpful -
Hug
3 ReactionsA neurologist does an EMG/nerve conduction test to test for neuropathy.
Yes, the motor neuropathy causes tremors. It’s misleading when you google motor neuropathy it says movement disorder to me they need to be clearer on that.
The SFN is confirmed by three biopsies. I had mine repeated and the SFN has became worse.
The cardiac autonomic neuropathy causes bradycardia/tachycardia I did a one month holter monitor test and was sent to an electrophysiologist then had a tilt table test. Once diagnosed they give you 8 years to live. The autonomic neuropathy affects the bladders, gastroparesis and so forth.
They are now testing me for CIDP. Which is an autoimmune type neuropathy and some other things by spinal tap.
-
Like -
Helpful -
Hug
3 ReactionsThank you for sharing, I hope you continue to get more answers and help! It sounds like you have a lot of knowledge about neuropathies! It’s very frustrating and confusing. When the neuropathy is not directly related to diabetes, it seems like it’s very hard to treat. I’m trying to understand more to help my 23 yr old son. He has seen many Neurologists & was diagnosed specifically with Autonomic Neuropathy, Peripheral Sensory Neuropathy, small fiber neuropathy, limited large fiber sensory dysfunction, compressive neuropathy in his hands, ulnar Neuropathy (elbows), carpal tunnel syndrome & frozen shoulders. His BP is high laying down 152/82 but he has an abnormally low resting heart rate (low 40’s) Sometimes it goes into the low 30’s when we are in the hospital. Then the monitors will show bradycardia & tachycardia all at the same time…it’s very scary to witness. Movement disorder Neurologist prescribed him midodrine for the tremors and the Autonomic dysfunction neurologist prescribed him propanolol for the high BP….but we are concerned of the side effects taking the two drugs together. He has to drink 130 oz of water a day, add extra salt to food, low impact exercise to keep the blood vessels open and blood flowing. He used to be on Florinef. He would faint a lot and have a lot of black out vision episodes…he’s come a long way since those days. Still gets very dizzy and faint but is able to catch it before fainting. Still experiencing the vision problems…lots of times he describes it as “shaky” vision now…the room shakes. I would like to ask for further heart testing as that is a very big concern! Thank you for sharing about your heart monitor testing…I think my son needs to do that test again.
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Helpful -
Hug
2 Reactions