GBS or CIDP
I don’t want to contribute to any anxiety you may be feeling, but I think the DX, as Goodney writes, is in question here. I have CIDP but was DX wrong twice before it was found that my CIDP was the result of Monoclonal Gammopathy and I was started on Plasma Transfers, which have worked well for me. It’s likely that I’m around your Dads age, so we have a lot in common. Yes, I agree that a nursing home is not a good idea. Let’s face it they don’t represent in any way the quality care he can receive in a hospital. I too had and still have a swollowing problem, but the Plasma Transfers have improved ability to swollow a great deal, and with some restriction, I can eat many things I couldn’t eat before treatment. It may simply be that he let the symptoms mount up and so it’s going to take a bit longer for him to improve more substantially. What I know of this disease is that it affects everyone differently, so he has to stay as positive as he can and you must be the best advocate he has. Don’t let them push around. If they try to send him to a nursing home seek legal help. Also talk to doctor about possibility of Plasma Transfers instead of IVIG. You need a neurologist that really knows his stuff and takes an interest in your dads case. In closing let me add that I’ve known of many people as sick as your dad is with CIPD that have made a good recovery. It takes time.
Good Luck, all the best
GBS or CIDP?
Thanks for your response. I looked up CIDP and it does seem to fit me better than GBS. I go back to the doctor this week and I will discuss it with her.
Although, Tuesday when I saw her after my last treatment, she did mention I probably should have the IVIG every 2 weeks and that I should go to Columbia Hospital to get another opinion, just to be sure.
The nurse at the hospital did tell me that my doctor placed a call to Columbia to speak to someone there. I feel confident that my doctor is doing the best for me. that she doesn’t think it is beneath her to reach out to other doctors to get the best care for me. She listens when I speak and keeps me in the loop.
GBS or CIDP?
I don’t know much about breast cancer, but I do know that chemo can cause neuropathy in the lower legs. But with the pattern you have described, it does sound like a pretty clear-cut case of CIDP to me. GBS would have been a much quicker decline initially. You didn’t mention the results of your lumbar puncture, was the protein level elevated? That is a sign of CIDP. Also the EMGs & any NCSs done are an important baseline. The fact that the 5 doses of IVIG that you received helped so much, is probably a good sign that the CIDP is relapsing/remitting. You will need constant treatments, but probably with monthly IVIG you will live quite normally. Remeber though, that those of us on this Forum are not doctors, just using years of experience & reading posts here.
GBS or CIDP?
I still don’t understand why they have dx your mother with CIDP this early on. I was in a similar physical condition to your mother back in 2002, dx with GBS, & it wasn’t until I showed no improvement after 8 weeks that I was rediagnosed with CIDP. It is still possible that she has a classic case of GBS, & if so, she could make a full recovery & never need treatment again.
If she does have CIDP, treatment might be trial & error. If IVIG does not help her, PP might be what she needs. Or immunosuppressants, or even chemo like I had to resort to. Even if she doesn’t make a complete recovery, she might still have a good quality of life. I need AFOs to walk and suffer from the dreaded fatigue, but other than that, life is good. BTW I remeber being in tremendous pain early on (mostly my feet), but I get by with 1800 mg of Neurontin daily. I wish her the best of luck, it might take some time…
GBS or CIDP…
I just went back & read all of your old posts. It seems that your symptoms did not come on rapidly (such as in 48 hours), but they came on over the course of weeks. Also, you did not go completely paralyzed, nor did you have breathing problems. Assuming you had a “mild case” of GBS, you were still having symptoms long after you should have made a faster recovery.
All of this leads me to think you are probably dealing with CIDP & not GBS. I was just wondering how long has it been since you had any IVIG infusions? When you did, did you make a fairly rapid recovery? No one wants to have CIDP, but there are many treatment options out there that I think you may not have explored when the doctor changed your dx to GBS. Please keep us posted or feel free to email me.
GBS or CIDP?
I was originally dx with GBS as my decline happened in a matter of weeks & not months. But I had a very severe case of CIDP, so thinking back now it seems logical to me that at first they could think it was GBS. It wasn’t until 6 weeks later, after 5 PP treatments & many IVIGs with no improvement, that my dx was changed to CIDP (also, I did not have any breathing problems.) I think sometimes the line between these two illnesses can be so minute, that it often hard for the neuros to differentiate between the two. Complicating thing even further is that there are different types of CIDP; the relapsing/remitting where the patient usually is treated with IVIG & often makes almost a spontaneous recovery, or the progressive form where the patient slowly continues to get even worse…
The only thing you have posted that hints of CIDP to me is when you mention Kevie being able to get up & run the halls after his IVIG treatment. If someone was rather paralyzed with GBS I doubt that the recovery would be that quick, even in a child. Please watch his hand symptoms carefully, & if it appears he needs IVIG as a booster, do not hesitate. Hand damage can be very difficult to get the function back, trust me I know…
GBS or CIDP
Kristina, I am perplexed and concerned. The onset of your grandmother’s illness was in March, treatment was not until about 4 months later in July, she responded initially then relapsed severely. GBS is active for the first 4-6 weeks so such a relapse is unlikely to be GBS.
This pattern is much more likely to be CIDP. Treatment for GBS/CIDP does not cure the disease it arrests further progress for upto 3-4 weeks, hence the need for repeated IVIG, usually monthly sometimes more often. I have CIDP and responded dramatically to the first IVIG but not to any more. DocDavid