I have TurboMed’s X-Terns. I find these AFOS to be more comfortable than the others I have used. They clip on the outside of your shoe & you can rock (heel to toe) on your foot. I want to switch to the Summit model because I understand they are more durable & have a 3-year warranty. I got my pair (bi-lateral foot drop) through my orthotist. They are available for direct purchase (which I recently did because I want a spare due to Medicare taking so long for approval when mine have broken. TurboMedUSA.com
I have TurboMed’s X-Terns. I find these AFOS to be more comfortable than the others I have used. They clip on the outside of your shoe & you can rock (heel to toe) on your foot. I want to switch to the Summit model because I understand they are more durable & have a 3-year warranty. I got my pair (bi-lateral foot drop) through my orthotist. They are available for direct purchase (which I recently did because I want a spare due to Medicare taking so long for approval when mine have broken. TurboMedUSA.com
Small fiber neuropathy and severe axonal sensorimotor polyneuropathy.
Here is my story. One my neurologist passed away. Have not been able to find a good neurologist. He was looking at IVIG therapy almost had gotten it an approval before he passed away. Now being referred to Heidelberg Germany. They have a large specialty of neurologist. I have left foot atrophy. It has affected my kidneys, gastroparesis, pancreas, bladder and not least but my heart. My pulse rate goes above 200 and my blood pressure is 160/60. I take metoprolol succinate extended release three times a day. I go between bradycardia and tachycardia. I can’t have a pacemaker due to the lack of nerves. Isn’t that sweet. My bladder unless I make myself go to the bathroom regularly I can’t tell and will urinate all over myself very embarrassing. No one has told me how this progress and how it will affect me. I am learning as I go. It seems neurologist do not want to discuss long term. By balance is off and I now have tremors in my hands, arms, and legs. My balance stinks. I now choke when I eat or drink. We are hiring an attorney to do a dnr. The electrophysiologist say I do not have much longer but that IVIG therapy could reverse some of the damage. I had iVI G therapy when I was a kid. Anyone else had it?
Small fiber neuropathy and severe axonal sensorimotor polyneuropathy.
Here is my story. One my neurologist passed away. Have not been able to find a good neurologist. He was looking at IVIG therapy almost had gotten it an approval before he passed away. Now being referred to Heidelberg Germany. They have a large specialty of neurologist. I have left foot atrophy. It has affected my kidneys, gastroparesis, pancreas, bladder and not least but my heart. My pulse rate goes above 200 and my blood pressure is 160/60. I take metoprolol succinate extended release three times a day. I go between bradycardia and tachycardia. I can’t have a pacemaker due to the lack of nerves. Isn’t that sweet. My bladder unless I make myself go to the bathroom regularly I can’t tell and will urinate all over myself very embarrassing. No one has told me how this progress and how it will affect me. I am learning as I go. It seems neurologist do not want to discuss long term. By balance is off and I now have tremors in my hands, arms, and legs. My balance stinks. I now choke when I eat or drink. We are hiring an attorney to do a dnr. The electrophysiologist say I do not have much longer but that IVIG therapy could reverse some of the damage. I had iVI G therapy when I was a kid. Anyone else had it?
Your neuropathy has caused severe problems and I am wondering if a diagnosis of CIDP (chronic inflammatory demyelinating polyneuropathy) or monoclonal gammopathy neuropathy has ever been considered. I have both of these and am receiving IVIG now (just started 2 months ago. It has helped some but is not a cure. If you’re in the US an evaluation at Mayo Clinic would be helpful to nail down a diagnosis. My situation got suddenly worse two weeks after my first Covid infection. It’s so hard to live with and I wish you the best for getting the help you need!
Your neuropathy has caused severe problems and I am wondering if a diagnosis of CIDP (chronic inflammatory demyelinating polyneuropathy) or monoclonal gammopathy neuropathy has ever been considered. I have both of these and am receiving IVIG now (just started 2 months ago. It has helped some but is not a cure. If you’re in the US an evaluation at Mayo Clinic would be helpful to nail down a diagnosis. My situation got suddenly worse two weeks after my first Covid infection. It’s so hard to live with and I wish you the best for getting the help you need!
I neurologist passed away Sep 2022 he did the EMG, nerve conduction test along with the punch biopsy for the small fiber neuropathy. . He almost had Ivig therapy approved with the insurance company. Now they will not do anything. I have been referred to Heidelberg Germany neurology clinic they lead in the studies of neuropathy. I do live in the US Dallas Tx. My family doctor used to work for the Mayo Clinic has offered to refer me. Do you get the treatments where you live or at the Mayo Clinic and how often? I took IVI G therapy as a little girl until I turned 18 and was off my parents insurance. The doctor passed away and my parents did not get my medical records. I have always had a low immune system. It can be given two ways IV or subcutaneously which way are you taking it?
Your neuropathy has caused severe problems and I am wondering if a diagnosis of CIDP (chronic inflammatory demyelinating polyneuropathy) or monoclonal gammopathy neuropathy has ever been considered. I have both of these and am receiving IVIG now (just started 2 months ago. It has helped some but is not a cure. If you’re in the US an evaluation at Mayo Clinic would be helpful to nail down a diagnosis. My situation got suddenly worse two weeks after my first Covid infection. It’s so hard to live with and I wish you the best for getting the help you need!
Thank you for responding. I have been trying to find someone on IVIG therapy. My understanding is it takes awhile for it to kick in but it can reverse some of the damage not all.
Small fiber neuropathy and severe axonal sensorimotor polyneuropathy.
Here is my story. One my neurologist passed away. Have not been able to find a good neurologist. He was looking at IVIG therapy almost had gotten it an approval before he passed away. Now being referred to Heidelberg Germany. They have a large specialty of neurologist. I have left foot atrophy. It has affected my kidneys, gastroparesis, pancreas, bladder and not least but my heart. My pulse rate goes above 200 and my blood pressure is 160/60. I take metoprolol succinate extended release three times a day. I go between bradycardia and tachycardia. I can’t have a pacemaker due to the lack of nerves. Isn’t that sweet. My bladder unless I make myself go to the bathroom regularly I can’t tell and will urinate all over myself very embarrassing. No one has told me how this progress and how it will affect me. I am learning as I go. It seems neurologist do not want to discuss long term. By balance is off and I now have tremors in my hands, arms, and legs. My balance stinks. I now choke when I eat or drink. We are hiring an attorney to do a dnr. The electrophysiologist say I do not have much longer but that IVIG therapy could reverse some of the damage. I had iVI G therapy when I was a kid. Anyone else had it?
I haven't got any medical advice. I just wanted to say how sorry I am for what you are going through. I wish I could say more but I'm just a regular person who feels so bad for you. I hope you find some comfort with a new treatment and a good doctor. Wish you all the best.
Small fiber neuropathy and severe axonal sensorimotor polyneuropathy.
Here is my story. One my neurologist passed away. Have not been able to find a good neurologist. He was looking at IVIG therapy almost had gotten it an approval before he passed away. Now being referred to Heidelberg Germany. They have a large specialty of neurologist. I have left foot atrophy. It has affected my kidneys, gastroparesis, pancreas, bladder and not least but my heart. My pulse rate goes above 200 and my blood pressure is 160/60. I take metoprolol succinate extended release three times a day. I go between bradycardia and tachycardia. I can’t have a pacemaker due to the lack of nerves. Isn’t that sweet. My bladder unless I make myself go to the bathroom regularly I can’t tell and will urinate all over myself very embarrassing. No one has told me how this progress and how it will affect me. I am learning as I go. It seems neurologist do not want to discuss long term. By balance is off and I now have tremors in my hands, arms, and legs. My balance stinks. I now choke when I eat or drink. We are hiring an attorney to do a dnr. The electrophysiologist say I do not have much longer but that IVIG therapy could reverse some of the damage. I had iVI G therapy when I was a kid. Anyone else had it?
Hello @artemis1886. Because you've expressed interest in IVIG Therapy for your neuropathy, you will notice that I have moved your post into an existing discussion that you can now find here:
Hello @artemis1886. Because you've expressed interest in IVIG Therapy for your neuropathy, you will notice that I have moved your post into an existing discussion that you can now find here:
Thank You for moving me over. We are stationed in Germany. I come back to see my doctors. I would prefer treatment in the US. The nice thing though about Germany is if they agree on the treatment it would be in my doctors office 5-10 minutes from my house. If I go to the Mayo Clinic you are looking at plane fares/ hotels/ food.
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I have TurboMed’s X-Terns. I find these AFOS to be more comfortable than the others I have used. They clip on the outside of your shoe & you can rock (heel to toe) on your foot. I want to switch to the Summit model because I understand they are more durable & have a 3-year warranty. I got my pair (bi-lateral foot drop) through my orthotist. They are available for direct purchase (which I recently did because I want a spare due to Medicare taking so long for approval when mine have broken. TurboMedUSA.com
Thank you, I will look into them. I don't have foot drop, but balance problems. Do you think they would help?
If your balance issue is related to something other than foot drop AFOs might not be the answer for you.
Small fiber neuropathy and severe axonal sensorimotor polyneuropathy.
Here is my story. One my neurologist passed away. Have not been able to find a good neurologist. He was looking at IVIG therapy almost had gotten it an approval before he passed away. Now being referred to Heidelberg Germany. They have a large specialty of neurologist. I have left foot atrophy. It has affected my kidneys, gastroparesis, pancreas, bladder and not least but my heart. My pulse rate goes above 200 and my blood pressure is 160/60. I take metoprolol succinate extended release three times a day. I go between bradycardia and tachycardia. I can’t have a pacemaker due to the lack of nerves. Isn’t that sweet. My bladder unless I make myself go to the bathroom regularly I can’t tell and will urinate all over myself very embarrassing. No one has told me how this progress and how it will affect me. I am learning as I go. It seems neurologist do not want to discuss long term. By balance is off and I now have tremors in my hands, arms, and legs. My balance stinks. I now choke when I eat or drink. We are hiring an attorney to do a dnr. The electrophysiologist say I do not have much longer but that IVIG therapy could reverse some of the damage. I had iVI G therapy when I was a kid. Anyone else had it?
Your neuropathy has caused severe problems and I am wondering if a diagnosis of CIDP (chronic inflammatory demyelinating polyneuropathy) or monoclonal gammopathy neuropathy has ever been considered. I have both of these and am receiving IVIG now (just started 2 months ago. It has helped some but is not a cure. If you’re in the US an evaluation at Mayo Clinic would be helpful to nail down a diagnosis. My situation got suddenly worse two weeks after my first Covid infection. It’s so hard to live with and I wish you the best for getting the help you need!
I neurologist passed away Sep 2022 he did the EMG, nerve conduction test along with the punch biopsy for the small fiber neuropathy. . He almost had Ivig therapy approved with the insurance company. Now they will not do anything. I have been referred to Heidelberg Germany neurology clinic they lead in the studies of neuropathy. I do live in the US Dallas Tx. My family doctor used to work for the Mayo Clinic has offered to refer me. Do you get the treatments where you live or at the Mayo Clinic and how often? I took IVI G therapy as a little girl until I turned 18 and was off my parents insurance. The doctor passed away and my parents did not get my medical records. I have always had a low immune system. It can be given two ways IV or subcutaneously which way are you taking it?
Thank you for responding. I have been trying to find someone on IVIG therapy. My understanding is it takes awhile for it to kick in but it can reverse some of the damage not all.
I haven't got any medical advice. I just wanted to say how sorry I am for what you are going through. I wish I could say more but I'm just a regular person who feels so bad for you. I hope you find some comfort with a new treatment and a good doctor. Wish you all the best.
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4 ReactionsHello @artemis1886. Because you've expressed interest in IVIG Therapy for your neuropathy, you will notice that I have moved your post into an existing discussion that you can now find here:
- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/
It sounds as though you are living in Germany. Does the neurologist in Heidelberg offer IVIG Therapy?
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2 ReactionsThank You for moving me over. We are stationed in Germany. I come back to see my doctors. I would prefer treatment in the US. The nice thing though about Germany is if they agree on the treatment it would be in my doctors office 5-10 minutes from my house. If I go to the Mayo Clinic you are looking at plane fares/ hotels/ food.
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Like -
Helpful -
Hug
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