I am a very ill woman who doesn't have a diagnosis and am desperately looking for one. For a while I suspected CIDP, but the neurologists I've seen told me I cannot have this because: 1. if I did, my reflexes would be bad, and mine are good;2. I would have respiratory problems; 3. my balance would be poor. Which brings me to these questions: do all of you who have a CIDP diagnosis have, indeed, bad reflexes, bad balance and respiratory problems?
I sure did! I fell repeatedly and lost all reflexes from the knees down.
I still have my reflexes and no respiratory problems. But my balance is bad.
I was diagnosed with CIDP about 2 years ago. Lost my balance, reflexes, and dexterity. No respiratory problems. After a year + of IVIG balance is back. Sill have banding around middle and muscle numbness along with hand feeling asleep.
What do you mean "banding around middle"?
Dana said:
What do you mean "banding around middle"?
This is the term that the docs used to describe the feeling of having something tightly wrapped around my midsection. I also had it around my wrists and one finger. Drives me nuts. Much of this is gone except around my midsection. One doctor said that banding shows that my spine is affected. No idea what he meant.
This whole thing is the weirdest thing I have ever experienced. No way to explain it to others.
Thank you and sorry. I don't have this, but have many other weirs things.
My reflexes are essentially non-existent now. The more numb my legs and feet get, the worse my balance is. I don't have respiratory issues, but I was able to get treatment before it reached my lungs.
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Thank you, Kelsey. My feet and hands get numb every single night, but not during the day. No doctor has been able to explain why that is. I wonder if any of you has a similar problem. And does your numbness occur every day and if so, how long does it last?
My hands and feet started going numb in May. Whereas it varies in degree of sensation, it’s been constant sonce then.
Dana said:
Thank you, Kelsey. My feet and hands get numb every single night, but not during the day. No doctor has been able to explain why that is. I wonder if any of you has a similar problem. And does your numbness occur every day and if so, how long does it last?
By "constant" do you mean that it NEVER goes away?
Correct.it was explained to me that the numbness I feel in my hands and feet is the result of the damaged nerves. CIDP eats away at the protective sheath around your nerves and then the nerve itself. The more extensive the damage the longer the numbness will last.
Dana said:
By "constant" do you mean that it NEVER goes away?
My husbands hands go numb at night quite frequently. His is caused by his back being out of alignment.When I first noticed my numbness i thought it was caused by the same thing. But mine started progressing up my legs. I started falling. My legs got weaker and weaker until i was no longer able to stand up. My hands also lost almost all their strengh and coordination. It became difficult to feed myself. From the time i felt the nubmness to when i had to be hospitalized was only a month. You didn’t mention what your other symptoms are. What else are you dealing with?
I have balance issues, as I walk with a cane. I am currently going through IG Therapy, and am also taking physical therapy. Between the both of them, it is helping little by little. Physical therapy is working on strength first, then balance. I do not have any reflexes from my elbow down on my right arm, and no reflexes in either of my legs or feet. I have had no respiratory issues. Have experienced banding more on my left side in my mid section and down toward my hip.
I was miserable with the banding, but didn't see it anywhere in the published CIDP symptoms. But I've seen many here who describe it! It has almost completely gone since I began IVIG.
rocketsmoke said:
I have balance issues, as I walk with a cane. I am currently going through IG Therapy, and am also taking physical therapy. Between the both of them, it is helping little by little. Physical therapy is working on strength first, then balance. I do not have any reflexes from my elbow down on my right arm, and no reflexes in either of my legs or feet. I have had no respiratory issues. Have experienced banding more on my left side in my mid section and down toward my hip.
I have only been getting IVIG since August, every 3 weeks. I hope it eventually helps with the banding. I don't have pain with it, just the tightness and hard to take a deep breath at times.
Thank you for your replies. Another question: is CK level something that they test for for CIDP?
I do not recall getting CK level checked during all my tests in being diagnosed.
Thank you. So, in order to get a diagnosis of CIDP what tests are done? Is a spinal tap absolutely necessary?
I had a spinal tap and an emg test. Emg test is not fun!! The spinal tap wasn’t bad at all. I think that’s what they use to diagnose GBS then if you are still dealing with it after 8 weeks it’s considered CIDP. If my understanding is correct.
Dana said:
Thank you. So, in order to get a diagnosis of CIDP what tests are done? Is a spinal tap absolutely necessary?