My nero dx me with demylinating polyneuropathy in April of this year and has been treating me with IVIG and I have been getting better. Does anyone know is my dx the same as CIDP?
Sounds like a short form for CIDP to me.
A cute I'm not so sure about, from what I know and have heard, there's nothing cute about it. Maybe they should rename it. lol, ouch!!! Gary
It's possible you have the acute version (generally known as Guillain-Barre Syndrome or GBS). Have you just had one episode? If so, it might be GBS.
But, if you have recovered somewhat, and then had a relapse, then you probably have the chronic version (CIDP). I had one episode, got much better, than had another episode about four months later. I was first diagnosed with GBS, which is much more common. When I had the relapse, my neurologist changed the diagnosis to CIDP.
I'm not sure how much difference it makes at this point, as I think the treatments are pretty much the same. If the IVIG is working for you, that's great, and you can just continue with that.
If your doctor does decide it is GBS, then you need to be aware that there is a slight chance that it is actually CIDP, and you might possible have a relapse. If you do have a relapse, it is important to get back in for treatment quickly. So, watch your strength, and be sure to call your doctor if you feel you are getting weaker again.
Good luck,
Bill
The nurses called it CIDP from day one so I did to. Its so hard to get any info out of my Dr. But Thanks. Rick
mdolich said:
Thats what it sounds like to me too Rickinmo.
Acute inflammatory demyelinating polyneuropathy (AIDP) and, Chronic inflammatory demyelinating polyneuropathy (CIDP) are both demyelinating polyneuropathies. AIDP is the most common form of GBS. CIDP is closely related to Guillain–Barré syndrome and it is considered the Chronic counterpart of that Acute disease.It is sometimes referred to as the chronic cousin of GBS.
CIDP is sometimes called chronic relapsing polyneuropathy or chronic inflammatory demyelinating polyradiculoneuropathy (because it involves the nerve roots).
I have CIDP. I was first dx with GBS in 2003. I had sudden onset of GBS, I turned off the TV one night and woke up paralyzed from the waist down. I was rushed to the hospital and put in ICU for two weeks. I went semicomatose and had to be put on a ventilator, I spent a total of four weeks in the hospital. I was given ten rounds of IVIG. After recieving the IVIG and several months of physical Therapy I was back up walking using a cane. Then in 2005 I started to have relapses and ended up back in a wheelchair. I was rediagnosed CIDP in 2006 and was put back on IVIG. They tell me now that I will need IVIG for the rest of my life if I want to keep walking. I go up to the VA hospital every three weeks now for my infusions, in fact I'm going up tomorrow for one.
Good Luck, Stay Strong and keep a positive Attitude.
I too have the same...I've been in search of finding a dx since 9/06...long long story! In March of this yr...praise the Lord I went to ONE more neuro after being presuaded by some close friends who also see him.....after the first few minutes of me telling this doc whats been happening/going on w/me he knew exactly...immediately what was wrong w/me....originally he referred to it as; Idiopathic Peripheral (sensory) Neuropathy...now most of the time he and my nurse who administers my IVIg plasma infusion refer to it as CIDP.....I'm not sure myself the difference if there is one...I've kind of got the impression that since my has gone undiagnosed for so long a time and I have unfortunately "progressed" that is why they are now calling it CIDP...thats my thought...I am not responding to IVIg treatments..I've yet to see a difference....in fact I'm worse each month I go back to see the doc. He has tried a whole month of prenisone-high dosage at that which helped ALOT but can't stay on that bc of significant prob it causes damages other parts of body so he has added Cellceft which is a drug used in patients who have recieved new organs-to aide in their body not rejecting the organ...this in hopes the plasma will be more beneficial to me....it makes me sick on my stomach but I'm still trying it....I now have cyst developing, one behind my right knee-the back of my knee not the cap...also got a huge one on my hip which I woke in incredible pain a few wks ago...screaming! my husband literally had to jerk me out of bed to standing position and walk me for more then a hr til I could walk on my own w/o screaming....it still bothers me I'm in bed most of the time can't stand but for short periods of time or have so much more pain and swelling.....my hip...I was left w/a cyst I'm assumming the size of a small bowl. Its hard in center and softer on the outer sides of it. Hurts! I could go on and on w/whats become worse and new symptoms...God bless
bless your heart....its a tough disease to live through! I continue to progress each time I go back to doc monthly...am looking forward to a relapse or as many of my friends say a "complete healing"...would be even better...I don't seem to be responding to IVIg or at least I don't see a difference but don't plan on stopping it as it is my only hope outside of God in slowing the progression..how am I to know I wouldn't be worse unless I stopped it. don't want to find out. The treatments wear me out completely and i often get horrible headaches for at least 5 days+so by the time I feel better from the treatment I don't know if I'm better then I was beofre or not?? My doc has also added cellceft to my meds. A drug to help organ recipients' body not to reject new organs, for me to aide w/plasma....it makes me sick on my stomach but I'll do anything...I'm in incredible dibilitating pain constant so severe I could cut off my limbs, neck yo name it. I'm now getting cyst in my legs and hip that are unbelievably painful and swell so much I have to sit most of the time or lay.
rickinmo said:
The nurses called it CIDP from day one so I did to. Its so hard to get any info out of my Dr. But Thanks. Rick
mdolich said:Thats what it sounds like to me too Rickinmo.
Acute inflammatory demyelinating polyneuropathy (AIDP) and, Chronic inflammatory demyelinating polyneuropathy (CIDP) are both demyelinating polyneuropathies. AIDP is the most common form of GBS. CIDP is closely related to Guillain–Barré syndrome and it is considered the Chronic counterpart of that Acute disease.It is sometimes referred to as the chronic cousin of GBS.
CIDP is sometimes called chronic relapsing polyneuropathy or chronic inflammatory demyelinating polyradiculoneuropathy (because it involves the nerve roots).
I have CIDP. I was first dx with GBS in 2003. I had sudden onset of GBS, I turned off the TV one night and woke up paralyzed from the waist down. I was rushed to the hospital and put in ICU for two weeks. I went semicomatose and had to be put on a ventilator, I spent a total of four weeks in the hospital. I was given ten rounds of IVIG. After recieving the IVIG and several months of physical Therapy I was back up walking using a cane. Then in 2005 I started to have relapses and ended up back in a wheelchair. I was rediagnosed CIDP in 2006 and was put back on IVIG. They tell me now that I will need IVIG for the rest of my life if I want to keep walking. I go up to the VA hospital every three weeks now for my infusions, in fact I'm going up tomorrow for one.
Good Luck, Stay Strong and keep a positive Attitude.