@jshdma
Hello,
I started to have paresthesia (numbness, tingling, and burning) in one of my lower legs and feet. This was immediately after my first COVID-19 vaccine. Then after my second vaccine two weeks later my leg and foot felt like it was on fire and the pain never stopped. I had weakness in my legs and was having difficulty walking up stairs and also loosing my balance. As time went on I was having the paresthesia in other extremities and in my face.
I went to my primary care doc and he just ignored my symptoms and said to give it time, after about 3months of this I consulted a few of my colleagues and I made an appointment with neurology and had an EMG, lumbar puncture, MRI, CT and multiple lab tests. BINGO diagnosis of CIDP
@cgrogers hello,
My name is Kim and I also have been diagnosed with CIDP about 18 months ago. I think it would be wonderful to have a support group here at connect.mayoclinic.org.
I have look at all the sites that John sent you and they have also been very helpful.
I also had a very difficult time obtaining a diagnosis! I am a healthcare provider myself so I pushed and pushed and pushed until a very seasoned neurologist helped me and then once the diagnosis was made started my IGG infusions. I currently receive infusions every two weeks and the symptoms improve for about 10-12 days. I have said this on multiple group discussions that I also find that a low carb-sugar diet, daily exercise, and no alcohol also improves my symptoms. This can be a very frustrating and difficult diagnosis. I also take things much slower than at one time, if I over do I pay for it the next couple of days.
If you ever have any questions please feel free. Keep us informed on your progress.
Kim
Hi Kim! Thank you for your feed back. Are you saying your symptoms improving for 10-12 days and then? Are you back to where you started?How long did it take to diagnose you? And do you know what triggered it? Mine was absolutely out of blue. Although I’m a 76 years old, I was healthy and walking 3-4 miles a day when suddenly start having these symptoms in my toes and hand. The first thing neurologist asked was - have you had any flu vaccine lately? Diabetes? Covid? Flu? None of the above. Last Covid booster was mid December and my symptoms started in April. I did fall in February and fractured my wrist, but the recovery was very easy and normal. Could this be a cause for my immune system to collapse like this?
I’m starting my IGIV GAMMAGARD today. Would like to know more details about your diagnosis.
@goldacharma
Hello, I would be glad to answer any questions relating to my symptoms, diagnosis and treatment of CIDP. I have been receiving IgG infusions for approximately one and one-half years and I current get an infusion every two weeks. Once the infusion is completed I do have severe symptoms such as numbness, tingling, and pain for about 30 minutes to an hour and then my symptoms seem to subside for about 10-12 days and then they return and it is time for infusion again. I initially started infusions once a month and had to go to every two weeks to manage symptoms. Currently, I have improved so much from the day I started infusions but no I am not back to were I was prior to my COVID-19 vaccine. I had my first COVID-19 vaccine and about 15 minutes after I started to have numbness in one of my legs and foot and it progressed to all my extremities over a period of 2-4 weeks. I was told it was not related to the vaccine and to get the second vaccine and I did and I am sorry I ever listened to the vaccine team. I am an anesthesia provider and I had no choice but to get the second vaccine or I would have not been allow to practice. Over a period of 4-6 weeks I had weakness in my legs and had difficulty walking and going up and down stairs, over time severe pain developed and no one was able to diagnose my disease. My primary care MD told me to give it some time and I eventually took matters in my now hands and found a neurologist that started tests and treatments, so all and all it took about a year to diagnose and start treatments. I hope you have a good infusion, I know it is scary the first time, let me know if I can help in any way.
Kim
Hi, did anyone experience facial tightness/weakness before diagnosis or lower extremity shaking (worse on sitting or standing)? I have been having a variety of sx and am undiagnosed and am having a terrible time getting the tests in a timely manner. One of my many symptoms is facial tightness like its harder to make facial expressions as well as twitching with facial movements like when raising my eyebrows or movement of my mouth the corners of my mouth twitch.
@goldacharma
Hello, I would be glad to answer any questions relating to my symptoms, diagnosis and treatment of CIDP. I have been receiving IgG infusions for approximately one and one-half years and I current get an infusion every two weeks. Once the infusion is completed I do have severe symptoms such as numbness, tingling, and pain for about 30 minutes to an hour and then my symptoms seem to subside for about 10-12 days and then they return and it is time for infusion again. I initially started infusions once a month and had to go to every two weeks to manage symptoms. Currently, I have improved so much from the day I started infusions but no I am not back to were I was prior to my COVID-19 vaccine. I had my first COVID-19 vaccine and about 15 minutes after I started to have numbness in one of my legs and foot and it progressed to all my extremities over a period of 2-4 weeks. I was told it was not related to the vaccine and to get the second vaccine and I did and I am sorry I ever listened to the vaccine team. I am an anesthesia provider and I had no choice but to get the second vaccine or I would have not been allow to practice. Over a period of 4-6 weeks I had weakness in my legs and had difficulty walking and going up and down stairs, over time severe pain developed and no one was able to diagnose my disease. My primary care MD told me to give it some time and I eventually took matters in my now hands and found a neurologist that started tests and treatments, so all and all it took about a year to diagnose and start treatments. I hope you have a good infusion, I know it is scary the first time, let me know if I can help in any way.
Kim
Awe, thank you, Kim for responding! Can’t imagine how could they deny your symptoms are related to vaccine when you had them immediately after. That was the first thing neurologist asked me-“ have you had any vaccine lately ?” Looks like we learn the hard way, I was such an advocate for Covid vaccine, criticised people who refused etc ; and we got flu vaccine every year…not anymore..
So, are you saying it’s our fate now- to get IGIV for life? I just finished my initial load - 4 days of GAMMAGARD 2 hrs40 minutes. So far I feel the same, yesterday felt that my feet got a little better, but not today. Was told I will probably feel some improvement after at least 3 treatments. My protocol from now on is 2 days every 4 weeks. Thank you again for sharing your story, it’s very valuable. Hope you feel better.
My story is similar, but less severe. My neurological symptoms began within 2 weeks of the first Pfizer vaccine, but were misdiagnosed. As a result, I received a second Pfizer vaccine and subsequently developed sensory and motor peripheral neuropathy. Eventually, when I could see a rheumatologist and neurologist, I was offered prednisone infusions. However, by that time, my condition had started to slowly improve. At 27 months, I am now much improved, but not yet 100 percent. There was an article in the June issue of the prestigious journal Science, which discussed injuries due to the Covid vaccines, including neurological injuries. The government is currently being sued for censorship on social media regarding vaccine information such as the censorship that the vaccine injured have experienced.
Hello @goldacharna, I would like to add my welcome to Connect along with @dwyermw and others. Hoping your upcoming treatments will provide some relief for your CIDP symptoms.
Well, finished my initial 4 days IGIV treatment yesterday, felt some tiny improvement after day 3, but yesterday after infusion and all day today it’s much worse, actually my symptoms are worse I’ve had it since the problem started. So upsetting. Has anybody had anything like I’m describing? Thank you in advance for your feed back.
Well, finished my initial 4 days IGIV treatment yesterday, felt some tiny improvement after day 3, but yesterday after infusion and all day today it’s much worse, actually my symptoms are worse I’ve had it since the problem started. So upsetting. Has anybody had anything like I’m describing? Thank you in advance for your feed back.
@goldacharna
I am so sorry to hear that the infusion has not helped. Please give it some time and perhaps it will improve. A couple of things I did not mention is that when the weather is bad I always have symptoms regardless of the date of my infusions. Also, I have stopped all alcohol use and I have to exercise several times per week or I have more pain and parentheses in my extremities. Also if I have high sugar intact my symptoms are worse.
I am so sorry you have to go through this……. My though and prayers are with you.
Are you taking any medications
such as gabapentin?
Kim
@goldacharna
I am so sorry to hear that the infusion has not helped. Please give it some time and perhaps it will improve. A couple of things I did not mention is that when the weather is bad I always have symptoms regardless of the date of my infusions. Also, I have stopped all alcohol use and I have to exercise several times per week or I have more pain and parentheses in my extremities. Also if I have high sugar intact my symptoms are worse.
I am so sorry you have to go through this……. My though and prayers are with you.
Are you taking any medications
such as gabapentin?
Kim
Thank you Kim for responding. I’m not taking gabapentin, I’m afraid for it to mess up my brain, what is your experience with it? I’m on Tylenol when needed. And I read that joint and muscle pain could be a side effect of the initial load and last for about 5 days, I hope this is the case. I’m not touching alcohol, no sweets but eat lots of fruits, which is also sugar… wishing you the best!
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@jshdma
Hello,
I started to have paresthesia (numbness, tingling, and burning) in one of my lower legs and feet. This was immediately after my first COVID-19 vaccine. Then after my second vaccine two weeks later my leg and foot felt like it was on fire and the pain never stopped. I had weakness in my legs and was having difficulty walking up stairs and also loosing my balance. As time went on I was having the paresthesia in other extremities and in my face.
I went to my primary care doc and he just ignored my symptoms and said to give it time, after about 3months of this I consulted a few of my colleagues and I made an appointment with neurology and had an EMG, lumbar puncture, MRI, CT and multiple lab tests. BINGO diagnosis of CIDP
@jshdma
Sorry I did not answer all of your questions.My neurologist does think there is a high probability of infusions continuing for lifetime…..
Hi Kim! Thank you for your feed back. Are you saying your symptoms improving for 10-12 days and then? Are you back to where you started?How long did it take to diagnose you? And do you know what triggered it? Mine was absolutely out of blue. Although I’m a 76 years old, I was healthy and walking 3-4 miles a day when suddenly start having these symptoms in my toes and hand. The first thing neurologist asked was - have you had any flu vaccine lately? Diabetes? Covid? Flu? None of the above. Last Covid booster was mid December and my symptoms started in April. I did fall in February and fractured my wrist, but the recovery was very easy and normal. Could this be a cause for my immune system to collapse like this?
I’m starting my IGIV GAMMAGARD today. Would like to know more details about your diagnosis.
@goldacharma
Hello, I would be glad to answer any questions relating to my symptoms, diagnosis and treatment of CIDP. I have been receiving IgG infusions for approximately one and one-half years and I current get an infusion every two weeks. Once the infusion is completed I do have severe symptoms such as numbness, tingling, and pain for about 30 minutes to an hour and then my symptoms seem to subside for about 10-12 days and then they return and it is time for infusion again. I initially started infusions once a month and had to go to every two weeks to manage symptoms. Currently, I have improved so much from the day I started infusions but no I am not back to were I was prior to my COVID-19 vaccine. I had my first COVID-19 vaccine and about 15 minutes after I started to have numbness in one of my legs and foot and it progressed to all my extremities over a period of 2-4 weeks. I was told it was not related to the vaccine and to get the second vaccine and I did and I am sorry I ever listened to the vaccine team. I am an anesthesia provider and I had no choice but to get the second vaccine or I would have not been allow to practice. Over a period of 4-6 weeks I had weakness in my legs and had difficulty walking and going up and down stairs, over time severe pain developed and no one was able to diagnose my disease. My primary care MD told me to give it some time and I eventually took matters in my now hands and found a neurologist that started tests and treatments, so all and all it took about a year to diagnose and start treatments. I hope you have a good infusion, I know it is scary the first time, let me know if I can help in any way.
Kim
-
Like -
Helpful -
Hug
1 ReactionHi, did anyone experience facial tightness/weakness before diagnosis or lower extremity shaking (worse on sitting or standing)? I have been having a variety of sx and am undiagnosed and am having a terrible time getting the tests in a timely manner. One of my many symptoms is facial tightness like its harder to make facial expressions as well as twitching with facial movements like when raising my eyebrows or movement of my mouth the corners of my mouth twitch.
Awe, thank you, Kim for responding! Can’t imagine how could they deny your symptoms are related to vaccine when you had them immediately after. That was the first thing neurologist asked me-“ have you had any vaccine lately ?” Looks like we learn the hard way, I was such an advocate for Covid vaccine, criticised people who refused etc ; and we got flu vaccine every year…not anymore..
So, are you saying it’s our fate now- to get IGIV for life? I just finished my initial load - 4 days of GAMMAGARD 2 hrs40 minutes. So far I feel the same, yesterday felt that my feet got a little better, but not today. Was told I will probably feel some improvement after at least 3 treatments. My protocol from now on is 2 days every 4 weeks. Thank you again for sharing your story, it’s very valuable. Hope you feel better.
My story is similar, but less severe. My neurological symptoms began within 2 weeks of the first Pfizer vaccine, but were misdiagnosed. As a result, I received a second Pfizer vaccine and subsequently developed sensory and motor peripheral neuropathy. Eventually, when I could see a rheumatologist and neurologist, I was offered prednisone infusions. However, by that time, my condition had started to slowly improve. At 27 months, I am now much improved, but not yet 100 percent. There was an article in the June issue of the prestigious journal Science, which discussed injuries due to the Covid vaccines, including neurological injuries. The government is currently being sued for censorship on social media regarding vaccine information such as the censorship that the vaccine injured have experienced.
-
Like -
Helpful -
Hug
1 ReactionWell, finished my initial 4 days IGIV treatment yesterday, felt some tiny improvement after day 3, but yesterday after infusion and all day today it’s much worse, actually my symptoms are worse I’ve had it since the problem started. So upsetting. Has anybody had anything like I’m describing? Thank you in advance for your feed back.
-
Like -
Helpful -
Hug
2 Reactions@goldacharna
I am so sorry to hear that the infusion has not helped. Please give it some time and perhaps it will improve. A couple of things I did not mention is that when the weather is bad I always have symptoms regardless of the date of my infusions. Also, I have stopped all alcohol use and I have to exercise several times per week or I have more pain and parentheses in my extremities. Also if I have high sugar intact my symptoms are worse.
I am so sorry you have to go through this……. My though and prayers are with you.
Are you taking any medications
such as gabapentin?
Kim
-
Like -
Helpful -
Hug
3 ReactionsThank you Kim for responding. I’m not taking gabapentin, I’m afraid for it to mess up my brain, what is your experience with it? I’m on Tylenol when needed. And I read that joint and muscle pain could be a side effect of the initial load and last for about 5 days, I hope this is the case. I’m not touching alcohol, no sweets but eat lots of fruits, which is also sugar… wishing you the best!