I was diagnosed with peripheral sensorimotor polyneuropathy last year with symptoms mostly in my feet and lower legs. This May my left ring finger and pinkie finger went numb. I went to an orthopedic surgeon who diagnosed me with cubital tunnel syndrome and scheduled decompression surgery but sent me for an EMG/nerve conduction test to rule out it coming from my neck. The EMG resulted in a diagnosis of CIDP. So can anybody prepare me for what symptoms I can expect and how you feel due to this. It would be nice to know the treatments also. I do have an appointment with my neurologist in a couple of weeks. Thank You.
Hi! Were you diagnosed just on one test EMG/nerve test? My diagnosis of CIDP were based on EMG and elevated protein from my lumber puncture test. I was only recently diagnosed and my treatment protocol is IGIV infusions I started this week. My symptoms (started in April) are numbness in my both feet - started from the toes and moved to entire sole, hands are also affected as I was diagnosed with carpal syndrome first. How did they came up with your original diagnosis I wonder, havent you had EMG back there, last year ?
I was diagnosed with peripheral sensorimotor polyneuropathy last year with symptoms mostly in my feet and lower legs. This May my left ring finger and pinkie finger went numb. I went to an orthopedic surgeon who diagnosed me with cubital tunnel syndrome and scheduled decompression surgery but sent me for an EMG/nerve conduction test to rule out it coming from my neck. The EMG resulted in a diagnosis of CIDP. So can anybody prepare me for what symptoms I can expect and how you feel due to this. It would be nice to know the treatments also. I do have an appointment with my neurologist in a couple of weeks. Thank You.
@coachrandy I’m so sorry to hear that you’ve been diagnosed with CIDP. But you’ve come to the right place to get all your questions answered. I added this link from @johnbishop who has mentioned some other discussions for you to check out. After you read the discussions, you’ll probably have lots of questions for the neurologist: write them down in a notebook and then write the answers. And, if you can, have someone go with you to all appointments. Two sets of ears are better than 1! https://connect.mayoclinic.org/comment/889189/
Everyone on Mayo Clinic Connect is very happy to answer questions and relate experiences so be sure to ask us questions!
Keep in touch and let me know how you’re doing
I was diagnosed with peripheral sensorimotor polyneuropathy last year with symptoms mostly in my feet and lower legs. This May my left ring finger and pinkie finger went numb. I went to an orthopedic surgeon who diagnosed me with cubital tunnel syndrome and scheduled decompression surgery but sent me for an EMG/nerve conduction test to rule out it coming from my neck. The EMG resulted in a diagnosis of CIDP. So can anybody prepare me for what symptoms I can expect and how you feel due to this. It would be nice to know the treatments also. I do have an appointment with my neurologist in a couple of weeks. Thank You.
I'm wondering if this YouTube video might be helpful. Below are the highlights of video.
Questions:
(0:10) How do you describe CIDP to someone for the first time?
(2:02) What symptoms do you look for when diagnosing CIDP?
(2:41) What can be done to help patients get diagnosed early and properly?
(3:14) How would your treatment differ for adult and paediatric cases?
(4:10) How important is early diagnosis in recovery?
(4:47) What does recovery look like?
(5:25) What supports can be given to people living with CIDP?
(6:08) What are some longterm residual symptoms that patients can expect?
(6:46) What advice would you give to someone recently diagnosed with CIDP?
(7:13) What is one of your most memorable patient stories?
To learn more about The GBS and CIDP Foundation of Canada, please visit https://www.gbscidp.ca/
It might be helpful to make a list of questions for your upcoming appointment with your neurologist. Can you provide an update after you meet with your neurologist?
I take a low dose of gabapentin (100 mg) morning and night and augment with cymbalta (60 and 30) during the day. This has helped me manage my pain for the last 8 years,
Hi! Were you diagnosed just on one test EMG/nerve test? My diagnosis of CIDP were based on EMG and elevated protein from my lumber puncture test. I was only recently diagnosed and my treatment protocol is IGIV infusions I started this week. My symptoms (started in April) are numbness in my both feet - started from the toes and moved to entire sole, hands are also affected as I was diagnosed with carpal syndrome first. How did they came up with your original diagnosis I wonder, havent you had EMG back there, last year ?
I had an EMG last week and they diagnosed off that and my EMG a year ago. I go to the neurologist next week to see what is next. I have had symptoms for about a year and a half. I imagine the neurologist will do the spinal tap or a nerve biopsy. Thank You.
@coachrandy I’m so sorry to hear that you’ve been diagnosed with CIDP. But you’ve come to the right place to get all your questions answered. I added this link from @johnbishop who has mentioned some other discussions for you to check out. After you read the discussions, you’ll probably have lots of questions for the neurologist: write them down in a notebook and then write the answers. And, if you can, have someone go with you to all appointments. Two sets of ears are better than 1! https://connect.mayoclinic.org/comment/889189/
Everyone on Mayo Clinic Connect is very happy to answer questions and relate experiences so be sure to ask us questions!
Keep in touch and let me know how you’re doing
I thought I would post an upcoming webinar from the Foundation of Peripheral Neuropathy that looks to be interesting and helpful for those with CIDP.
-----------------------------------
FPN Webinar: CIDP: From Soup to Nuts, with Sami Khella, MD
Fri, Aug 18, 2023 12:00 PM - 1:00 PM CDT
Registration link: https://register.gotowebinar.com/register/1926789006701509467
Dr. Khella will discuss different ways a patient should manage the condition, from when a patient seeks diagnosis to possible treatment options. The program will also highlight how CIDP varies from other forms of neuropathies. There will be a Q & A with Dr. Khella following the presentation.
Dr. Khella has more than 20 years experience in diagnosing and treating patients with a variety of neurologic diseases, and is an attending neurologist at Penn Presbyterian Medical Center. He co-founded the Penn Amyloidosis Center, one of the largest multidisciplinary programs in the United States treating patients with hereditary and acquired amyloidosis. They are a group that is active in clinical trials and cutting-edge therapies for this group of diseases. His other interests includes treating patients with acquired inflammatory neuropathies, such as chronic inflammatory demyelinating polyneuropathy (CIDP), and myopathies such as polymyositis and dermatomyositis.
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I was only recently diagnosed with CIDP, but I have had it for over 13 years!! I have been unable to get ANY MEDICAL PROFESSIONALS to do ANYTHING to even diagnose it, let alone treat it because of how I got it!!! Johns Hopkins even said to me directly, on the phone, "If you insist on attributing your illness to "that", WE WILL NOT EVEN SEE YOU!!!!!" They have hung me out to dry (more appropriately - to die) because of a huge lawsuit back in 2001. I was attacked by something that attacks and eats the myelin sheath off the nerves!!!! And I know about demyelinating diseases because I had a little grand niece die at age 2 1/2 from Batten's Disease! ---- Frankly, I just don't know what to do with myself. It's a little bit late for early intervention!!! But I do want to live long enough to complete a very important book I have half written, and continue motivational speaking. Lynne Henry 5/14/2023
I’m with you having been dealing with this disease about 11 yrs now.
Been thru 7 neurologists, all the testing you could imagine, all the meds, and also IVIG infusions which did t work for me either.
Right now my right hand is numb but my left is ok.
I can’t write or cry anything due to the fact I’ll drop it.
Seems like my whole body is affected by this CIDP diagnosis.
Starts with my numb feet and goes all the way to my lips and face. My balance is non existent also.
Don’t know what to do anymore, at my wits end and getting no help medically.
Ben told I’m a unique person!
I was just diagnosed with CIDP. My symptoms started in April and I’m starting IGIV GAMMAGARD next week. Not all my test are supporting this diagnosis but my neurologist is basing it on main 2 - EMG/ nerve test and a little elevated protein.
Hi, I was diagnosed the same way EMG/nerve study and the top end of normal proteins in spinal fluid. Currently waiting for IVIG insurance approval. Hope all goes well next week!
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I was diagnosed with peripheral sensorimotor polyneuropathy last year with symptoms mostly in my feet and lower legs. This May my left ring finger and pinkie finger went numb. I went to an orthopedic surgeon who diagnosed me with cubital tunnel syndrome and scheduled decompression surgery but sent me for an EMG/nerve conduction test to rule out it coming from my neck. The EMG resulted in a diagnosis of CIDP. So can anybody prepare me for what symptoms I can expect and how you feel due to this. It would be nice to know the treatments also. I do have an appointment with my neurologist in a couple of weeks. Thank You.
Hi! Were you diagnosed just on one test EMG/nerve test? My diagnosis of CIDP were based on EMG and elevated protein from my lumber puncture test. I was only recently diagnosed and my treatment protocol is IGIV infusions I started this week. My symptoms (started in April) are numbness in my both feet - started from the toes and moved to entire sole, hands are also affected as I was diagnosed with carpal syndrome first. How did they came up with your original diagnosis I wonder, havent you had EMG back there, last year ?
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2 Reactions@coachrandy I’m so sorry to hear that you’ve been diagnosed with CIDP. But you’ve come to the right place to get all your questions answered. I added this link from @johnbishop who has mentioned some other discussions for you to check out. After you read the discussions, you’ll probably have lots of questions for the neurologist: write them down in a notebook and then write the answers. And, if you can, have someone go with you to all appointments. Two sets of ears are better than 1!
https://connect.mayoclinic.org/comment/889189/
Everyone on Mayo Clinic Connect is very happy to answer questions and relate experiences so be sure to ask us questions!
Keep in touch and let me know how you’re doing
-
Like -
Helpful -
Hug
4 ReactionsHello @coachrandy, I would like to add my welcome to Connect along with @goldacharna and others. There is another discussion you might find helpful for learning what other members have shared.
--- CIDP (Chronic Inflammatory Demyelinating Polyneuropathy): https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/
I'm wondering if this YouTube video might be helpful. Below are the highlights of video.
Questions:
(0:10) How do you describe CIDP to someone for the first time?
(2:02) What symptoms do you look for when diagnosing CIDP?
(2:41) What can be done to help patients get diagnosed early and properly?
(3:14) How would your treatment differ for adult and paediatric cases?
(4:10) How important is early diagnosis in recovery?
(4:47) What does recovery look like?
(5:25) What supports can be given to people living with CIDP?
(6:08) What are some longterm residual symptoms that patients can expect?
(6:46) What advice would you give to someone recently diagnosed with CIDP?
(7:13) What is one of your most memorable patient stories?
To learn more about The GBS and CIDP Foundation of Canada, please visit
https://www.gbscidp.ca/
It might be helpful to make a list of questions for your upcoming appointment with your neurologist. Can you provide an update after you meet with your neurologist?
-
Like -
Helpful -
Hug
4 ReactionsI take a low dose of gabapentin (100 mg) morning and night and augment with cymbalta (60 and 30) during the day. This has helped me manage my pain for the last 8 years,
-
Like -
Helpful -
Hug
1 ReactionI had an EMG last week and they diagnosed off that and my EMG a year ago. I go to the neurologist next week to see what is next. I have had symptoms for about a year and a half. I imagine the neurologist will do the spinal tap or a nerve biopsy. Thank You.
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Like -
Helpful -
Hug
2 ReactionsThank you
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Hug
1 ReactionI thought I would post an upcoming webinar from the Foundation of Peripheral Neuropathy that looks to be interesting and helpful for those with CIDP.
-----------------------------------
FPN Webinar: CIDP: From Soup to Nuts, with Sami Khella, MD
Fri, Aug 18, 2023 12:00 PM - 1:00 PM CDT
Registration link: https://register.gotowebinar.com/register/1926789006701509467
Dr. Khella will discuss different ways a patient should manage the condition, from when a patient seeks diagnosis to possible treatment options. The program will also highlight how CIDP varies from other forms of neuropathies. There will be a Q & A with Dr. Khella following the presentation.
Dr. Khella has more than 20 years experience in diagnosing and treating patients with a variety of neurologic diseases, and is an attending neurologist at Penn Presbyterian Medical Center. He co-founded the Penn Amyloidosis Center, one of the largest multidisciplinary programs in the United States treating patients with hereditary and acquired amyloidosis. They are a group that is active in clinical trials and cutting-edge therapies for this group of diseases. His other interests includes treating patients with acquired inflammatory neuropathies, such as chronic inflammatory demyelinating polyneuropathy (CIDP), and myopathies such as polymyositis and dermatomyositis.
----------------------------
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Like -
Helpful -
Hug
1 ReactionI’m with you having been dealing with this disease about 11 yrs now.
Been thru 7 neurologists, all the testing you could imagine, all the meds, and also IVIG infusions which did t work for me either.
Right now my right hand is numb but my left is ok.
I can’t write or cry anything due to the fact I’ll drop it.
Seems like my whole body is affected by this CIDP diagnosis.
Starts with my numb feet and goes all the way to my lips and face. My balance is non existent also.
Don’t know what to do anymore, at my wits end and getting no help medically.
Ben told I’m a unique person!
-
Like -
Helpful -
Hug
1 ReactionHi, I was diagnosed the same way EMG/nerve study and the top end of normal proteins in spinal fluid. Currently waiting for IVIG insurance approval. Hope all goes well next week!
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Like -
Helpful -
Hug
1 Reaction