hello,
I have been steadily symptom free from cidp for a year now. I have been off medication for a year but recently I've been getting the pins and needle sensation on the heel of both feet and numbness in hands that comes and goes. is this a relapse or just a flare ?
Anyone who has had a similar experience ?
Hi Joanne:
I am sorry you are experiencing this. I don't know the answer and am hoping others will share their feedback.
How long has your symptoms been going on and does rest seem to help?
I hope it subsides soon.
I will share how I am looking at relapse vs. flare in my own personal situation. I have been wondering the same. From the initial onset of CIDP, I was without treatment for only 2 months. The demylienation was pretty aggressive over that course where I eventually couldn't walk.I had all the typical symptoms (paresthesia in peripherals, gait, loss of reflexes and dexterity) and some strange neurological issues with temperature, inflammation/sweating. Fortunately, damage didn't reach the axons per my EMG. A loading dose seemed to stop the activity and from there, I was on monthly treatments of 50mg.After 4-5 months, I felt like I was more in a "maintenance" stage. I didn't have tingling or anything right before my 4 week mark. A few times when I was overly stressed (physically or mentally or due to a bug), I would get symptomatic in different ways. Focused rest for a few days got me back to normal. So, I thought that maybe what I was dealing with was residual damage to my nerves from the onset and I had just pushed myself too soon. You only have so much energy.My strength over the year, from physical neurological tests and general endurance improved, where the weakest part of my body in the fall was my hands (this is where my symptoms originally started). My take on this is that either I was in remission or the IVIG was successfully stopping further damage on the 4 week cycle. In fact, we were going to test a 6 week cycle.
That said, I had surgery in December and am now going through what I believe is a relapse. My surgery is healing very well and I am very close to being over the hump. I have had 2 ivig treatments since and significant amount of rest, but my legs are so shaky at times. Constantly, I feel like I am walking on jello. I can't stand for more than 5 minutes. This is far cry from where I was pre-op. I stopped driving as I have a huge commute to work. No amount of rest is making this better. I think there is active demylination going on and the IVIG administered thus far is not enough (50 mg/month). I have been authorized now to receive every 2 weeks until this gets under control. I don't know what else may confirm that I am having a relapse other than I am progressively getting weaker and an EMG/physical exam shows regression. My neurologist is out of state. It is just strange that the disease is attacking legs only this time. At my initial onset, it was the pins and needles (paresthesia) in my hands and then my feet, later turned into weakness.
hi dac1223
It has been happening for 2 weeks now, It comes and goes lasting less than a minute, and it doesnt happen everyday. This is making me feel paranoid. Im so sorry for your relapse and hope you get well soon. Have you tried physiotherapy? It worked wonders for me.My CIDP was mainly in my legs and affected my hands very later on, hopefully the ivig will kick in soon. Hope you get relief soon.
dac1223 said:
Hi Joanne:
I am sorry you are experiencing this. I don't know the answer and am hoping others will share their feedback.
How long has your symptoms been going on and does rest seem to help?
I hope it subsides soon.
I will share how I am looking at relapse vs. flare in my own personal situation. I have been wondering the same. From the initial onset of CIDP, I was without treatment for only 2 months. The demylienation was pretty aggressive over that course where I eventually couldn't walk.I had all the typical symptoms (paresthesia in peripherals, gait, loss of reflexes and dexterity) and some strange neurological issues with temperature, inflammation/sweating. Fortunately, damage didn't reach the axons per my EMG. A loading dose seemed to stop the activity and from there, I was on monthly treatments of 50mg.After 4-5 months, I felt like I was more in a "maintenance" stage. I didn't have tingling or anything right before my 4 week mark. A few times when I was overly stressed (physically or mentally or due to a bug), I would get symptomatic in different ways. Focused rest for a few days got me back to normal. So, I thought that maybe what I was dealing with was residual damage to my nerves from the onset and I had just pushed myself too soon. You only have so much energy.My strength over the year, from physical neurological tests and general endurance improved, where the weakest part of my body in the fall was my hands (this is where my symptoms originally started). My take on this is that either I was in remission or the IVIG was successfully stopping further damage on the 4 week cycle. In fact, we were going to test a 6 week cycle.
That said, I had surgery in December and am now going through what I believe is a relapse. My surgery is healing very well and I am very close to being over the hump. I have had 2 ivig treatments since and significant amount of rest, but my legs are so shaky at times. Constantly, I feel like I am walking on jello. I can't stand for more than 5 minutes. This is far cry from where I was pre-op. I stopped driving as I have a huge commute to work. No amount of rest is making this better. I think there is active demylination going on and the IVIG administered thus far is not enough (50 mg/month). I have been authorized now to receive every 2 weeks until this gets under control. I don't know what else may confirm that I am having a relapse other than I am progressively getting weaker and an EMG/physical exam shows regression. My neurologist is out of state. It is just strange that the disease is attacking legs only this time. At my initial onset, it was the pins and needles (paresthesia) in my hands and then my feet, later turned into weakness.
Hi Joanne:
I haven't tried physiotherapy. I did physical and occupational therapy last year which helped, once the demylineation seemed to be under control with IVIG. I will look into it.
What you are describing sounds like paresthesia (in peripherals). Hopefully, it subsides and is only a flare.
With different symptom presenting, it makes it so hard to know what is going on :(. We listen to our bodies, but sometimes, the messages are confusing. I am sure my neurologist wishes I wasn't on the my chart system, although, she has been pretty accommodating with my online inquiries.
I hope you feel better soon. Have a blessed day!