Hello, I am new to this group - coming over from the GBS support group, which is what I am currently diagnosed as.
Right now I am hospitalized for the third time in four months, due to falling from being paralyzed to the waist. But now I don't think I have GBS, I think I have acute onset CIDP. Here are the bullet points:
2/2/15 - Began feeling pain in my back and legs 15 days prior. At the point of paralysis to waist, weakness/numbness in arms and legs, went to ER. Two days of tests, spinal tap confirmed elevated proteins and diagnosed GBS. 5 days of IVIG, sent home making very slow but very steady recovery.
4/12/15 - Back to the hospital, falling and paralyzed to waist, weak/numb hands. Six treatments of plasmapheresis. Incredible progress, left walking completely unassisted and able to drive, get up independently from the floor, etc.
5/18/15 - 9 days after my last plasmapheresis treatment, the tingling started in my feet. Three days later, paralyzed to the waist again, with weakness/numbness in arms and legs as well. Began plasmapheresis again, scheduled for 6 treatments.
Here's where I am at, I again am responding very well to the treatment. After 2 rounds of plasmapheresis I am comfortably walking with a walker, could probably walk without it. Hand strength is almost all the way back, I am able to open my own bottles etc. From my research, here is what I have found over and over in medical articles:
"GBS patients may worsen after initial treatment (treatment-related fluctuation [TRF]). It is difficult to distinguish GBS-TRF from CIDP with acute onset (A-CIDP). A-CIDP should be suspected when a patient with GBS deteriorates after 9 weeks from onset or when deterioration occurs three times or more. Maintenance treatment should then be considered."
SO - my second deterioration was TEN weeks after onset, and I have now deteriorated three times. My neurologist says it's not necessarily CIDP. I want help from all of you correctly diagnosed with CIDP, what are the maintenance treatments I should be advocating for? I cannot keep being hospitalized without use of my legs, and the catheter obliterates my veins so I am not a good candidate for continued rounds of plasmapheresis after this. Thanks to these two rounds there will no longer be right side access to my jugular if I ever need a line in the future. Please - anyone who has been down this road please let me know. I am happy to do maintenance treatment and therapies if it means that I can live my life again. This is my 44th day of being hospitalized this year and I just want to be done with it, but when I try researching details on maintenance treatments I don't come up with any. Please help. Thank you so much!
It does sound like transition from GBS to CIDP. Problem is that there is no real distinction between the GBS and rapid onset CIDP, except (usually) GBS is one event. You have been through a few so you just have to suspect CIDP. Did you say somewhere what you suspect started the problem???
As for treatment - You have had success with plasmapheresis but you say that looks like a long term problem. Has IVIg been suggested again? You say "5 days of IVIG, sent home making very slow but very steady recovery." and that is probably typical of IVIg as that is how mine started - but with CIDP you have to keep going back (I go for a hit every 4 weeks) IF it really is CIDP. You might have to start with 5 days again (loading dose to get your system .... loaded).
Going to IVIg is something you need to discuss with the docs. Sometimes the blood-work indicates a particular treatment, depends on what they think is happening.
Anyhow - sounds like you are doing the research so at least you are better informed. Good luck.
I agree with Michael Stark but stop short of recommending treatmentss b/c my CIDP and yours and Michael’s and mdolich’s etc.,are all so different. I do agree that long term IVIg after a loading dose seems to promise the most given your particular set of recurrences and exacerbations. Whether steroids need be added are choices you need to discuss with your doc so the TWO of you can come up with a treatment plan designed specifically for you. Whether you will ever be “just through with it” remains to be seen. Start taking the long view; the short one can be so frustrating and unrewarding. You have a lot of friends here - use them! Good luck BrokenBear, Geepster (79 y/0 ret’d MD diagnosed with CIDP 15 mos. ago. IVIg every month ever since).
Ps: Meditation has helped a lot of CIDPers cope with their disease by helping to keep them “in the moment” without the useless worry that comes with fretting about the future or resenting their past actions.
This is very similar to my experience. In short: in October, I developed serious leg weakness, to the point that I had a hard time walking. I saw a neurologist, who quickly diagnosed GBS. He prescribed 5 sessions of IVIG, which worked wonders. After the IVIG, I left the hospital in much better shape, walking pretty easily. In my last doctor appointment, he told me that I should have no further problems, but then said, more or less, "Oh, by the way. A small number of people develop a chronic form of GBS. It probably won't happen to you, but if you start to notice more weakness, come back immediately."
Well, by February I was noticing weakness again. I went back, and he ran more tests, including spinal tap. After several days, he told me that I was one of the lucky few who had the chronic form, which he informed me was actually called CIDP.
I eventually wound up on a regimen of IVIG for three days, every three weeks. I would relapse (don't know if that is actually the correct term) between treatments, and actually shortened the interval on my own a couple of times, because I was getting too weak. But, each time the IVIG would bring me back.
I won't bother you with the rest of my story, which I have told here before. But I wanted to share my experience with being diagnosed with CIDP, so that you can judge how it compares to your story.
Hi,
I can relate to what you are going through. When I was admitted to the hospital, the first line of treatment was the plasma exchange. My neuro team said if you do IVIG first and then plasma exchange it will wash and clean the IVIG out of your body. I had 7 treatments of the plasma exchange first and I was also on prednisone. After that they did 5 IVIG treatments. I was in the hospital for six weeks. When I entered the hospital (2/26) I was paralyzed from the waist down and my arms were numb. When I left the hospital (4/7) I could barely walk with a walker. Within 2 weeks home and physical therapy I could walk without assistance. Now the last two weeks I walk normal. However when it is time for a IVIG treatment every (3-4) weeks I start becoming numb. Please let me know how I can help support you! Hang in there and best of luck. Cindy
Michael - it is suspected that the preceding event was an upper respiratory infection in early January. It was one of those lung rattling coughs that really lingered that I didn't think twice about once I was passed it. Then a couple weeks later, the tingling started.
Geepster - my main issue is that I don't trust my neurologist. At this point he isn't even entertaining the idea that it might be chronic, but given that this is my third deterioration in four months I feel that the issue being systemic has to be explored. At this point, his feeling is to finish up these six treatments of plasmapheresis and go on living my merry life. But I have no reason to believe that this rapid progress is going to stick - since it only lasted 9 days last time and came on so fast. I'm fervently seeking second opinions and trying to get an appointment at the center of excellence recommended in Philly, as that is the one closest to me. - Also, thank you for the suggestion of meditation. I definitely have not been i the moment as I'm trying to anticipate the next move of getting properly diagnosed. Because of it, I've barely been able to enjoy the fact that I'm currently walking without assistance because I am too concerned that it is going to slip away again.
mdolich - thank you, as always for your support and information. You have been such a great support and resource since I joined the GBS site in February.
Uncle Bill - When you say in February you started noticing weakness again, how quickly did it come on?
Cindy - thank you so much for sharing your experience. I'm starting to feel really positive that with the right diagnosis I will be able to live my life again, adapting to the new circumstances. I'm just so sick of being hospitalized as this is my third hospitalization in four months. It gets to the point where enough is enough, and I don't want to roll the dice with the hope that maybe this time it just won't come back... People keep telling me to stay positive, and I promise I am - but I also don't want to blindly deny the real possibility that this is going to be a chronic issue for my body.
Of course I am not a dr but it does sound like it is CIDP which is the chronic form of GBS. Your high proteins in your ST is exactly how I was diagnosed. I had the same in my ST. I had a team of Neuros at the hospital where I was and I questioned everything. I am wishing you the best and please let us know how you are doing.
You ask how long the weakness took to come on. Well, for the first time (in October, 2009) it is difficult to say, because I didn't really pay attention to it initially. But just estimating, it was probably 3-4 weeks between the time I first started to notice something, and the time it got bad enough for me to go to the doctor.
The second time (in February 2010), I was much more aware. To some degree I was probably in denial, but after a couple of weeks it was very obvious that I was getting weaker, so I went back to my neurologist. At that time, I still wasn't too bad. He ran an EMG, and it was worse than the previous EMG, so obviously something was going on. He scheduled a spinal tap, which took about three weeks to have done. The spinal tap confirmed the CIDP. Meanwhile, I was continuing to get weaker.
He then started me on high doses of Prednisone, which is an obvious first thing to try. I continued to get worse, but tried to tough it out, waiting for the Prednisone to kick in, because I really didn't want to go back to the hospital for more IVIG. Well, that was a bad idea, because I continued to get weaker. In less than two weeks I fell, and could not get back on my feet, so I was hospitalized again. Adding it all up, it was probably about six to eight weeks from the time I started to notice a relapse, to the time I was back in the hospital.
You mention that you don't trust your neurologist. This is a real problem. Very few doctors are familiar with CIDP, including some neurologists. It seems like you have done your research, and have valid questions. There is a danger in self-diagnosis, but there is also a danger in blindly accepting a doctor's diagnosis, when there is good information which contradicts it. I would strongly suggest that you try to find a neurologist who has experience with CIDP, and get a second opinion.
Good luck!
Bill
BrokenBear said:
Thank you all for your replies -
Michael - it is suspected that the preceding event was an upper respiratory infection in early January. It was one of those lung rattling coughs that really lingered that I didn't think twice about once I was passed it. Then a couple weeks later, the tingling started.
Geepster - my main issue is that I don't trust my neurologist. At this point he isn't even entertaining the idea that it might be chronic, but given that this is my third deterioration in four months I feel that the issue being systemic has to be explored. At this point, his feeling is to finish up these six treatments of plasmapheresis and go on living my merry life. But I have no reason to believe that this rapid progress is going to stick - since it only lasted 9 days last time and came on so fast. I'm fervently seeking second opinions and trying to get an appointment at the center of excellence recommended in Philly, as that is the one closest to me. - Also, thank you for the suggestion of meditation. I definitely have not been i the moment as I'm trying to anticipate the next move of getting properly diagnosed. Because of it, I've barely been able to enjoy the fact that I'm currently walking without assistance because I am too concerned that it is going to slip away again.
mdolich - thank you, as always for your support and information. You have been such a great support and resource since I joined the GBS site in February.
Uncle Bill - When you say in February you started noticing weakness again, how quickly did it come on?
Cindy - thank you so much for sharing your experience. I'm starting to feel really positive that with the right diagnosis I will be able to live my life again, adapting to the new circumstances. I'm just so sick of being hospitalized as this is my third hospitalization in four months. It gets to the point where enough is enough, and I don't want to roll the dice with the hope that maybe this time it just won't come back... People keep telling me to stay positive, and I promise I am - but I also don't want to blindly deny the real possibility that this is going to be a chronic issue for my body.
After getting a fifth neurologist involved, I have FINALLY been diagnosed CIDP. I will be starting my infusions this week. I hope it staves off a fourth deterioration.
Dr. Richard Burt, head of Immunology at Northwestern University Feinberg School of Medicine in Chicago - a FIRST RATE HOSPITAL - has had a trial running for the past 12 years that has been curing (my word, not his) MS & now CIDP. By "cure" I mean ABSENCE OF PROGRESSION FOR YEARS WITH NO MEDS. Despite this, UCSF STANFORD, & MAYO, all of which examined my son, are not telling their patients about it. One physician at Kaiser did tell his patient about it but asked the patient to please not say where she'd gotten the information. One doctor told his patient that Burt's treatment was very dangerous. He's lost 2 patients out of several hundred he's treated who were so sick that many of them would have died without it - certainly my son was that sick. I do not know why docs are so resistant to informing their patients who aren't responding to the already approved treatments. My son, who had what one neurologist called the "wicked-ist" form of CIDP he'd ever seen, had lost ALL his function in just over 6 months, was then getting double vision & trouble with breathing. Neurologist at UCSF was talking respirator. Within a year all of my son's Myelin had grown back & he recovered 99% of his function. Burt's treatment involves removing stem cells from patient's blood (not a bone marrow transplant,) then chemo-ing away the existing immune system, reinfusing the stem cells to build a new immune system absent the parts that had been attacking the Myelin. Myelin grows back very quickly as opposed to the axons in nerves. Burt can't treat everyone but anyone with CIDP OR MS, should call Burt's office. I wrote this GBS/CIDP group for years asking them to write about it - to no avail. Maybe now they have, but did not for years so I stopped keeping track
Hdanhaki - this is incredible, thank you. I am now hospitalized - AGAIN because of my fourth deterioration in as many months. I am desperate. They infused me with IVIG, but my onset is so quick that the doctors really don't know what to tell me. I will definitely look in to this. Thank you so much and I am so happy to hear about your son's remarkable progress.
Hdanhaki - this is incredible, thank you. I am now hospitalized - AGAIN because of my fourth deterioration in as many months. I am desperate. They infused me with IVIG, but my onset is so quick that the doctors really don't know what to tell me. I will definitely look in to this. Thank you so much and I am so happy to hear about your son's remarkable progress.
IVIG & Plasma pheresis didn't even slow my son's CIDP progression. He was completely out of options and STILL his docs advised not entering this trial. Son would be happy to talk with you, as would another Burt patient in SF he knows, who also had the treatment.
I hold fervent wishes that you'll be accepted as his patient. Burt's trial is only one of 3 going on in the world. Others are in Canada and a South American country I don't recall.
A note of caution. Everyone should be very aware that peripheral neuropathy (and here we think of CIDP) comes in very many forms and while there are some well tried and safe treatments that prevent further myelin loss and can rebuild myelin not completely lost (such as IVIg), there is no known and readily accepted total repair treatment that generally works. There are great hopes for some such as stem cell treatment but while there appear to be some successes the bottom line is that as yet none have been generally reported in peer reviewed literature as THE answer.
Research goes on and may one day provide the answer but until then hope for the best but don't really expect it until it happens.
A note of caution. Everyone should be very aware that peripheral neuropathy (and here we think of CIDP) comes in very many forms and while there are some well tried and safe treatments that prevent further myelin loss and can rebuild myelin not completely lost (such as IVIg), there is no known and readily accepted total repair treatment that generally works. There are great hopes for some such as stem cell treatment but while there appear to be some successes the bottom line is that as yet none have been generally reported in peer reviewed literature as THE answer.
Research goes on and may one day provide the answer but until then hope for the best but don't really expect it until it happens.
Some of Dr. Burt's trial results have been published and peer reviewed. There's no claim to have treated the "very many forms" of peripheral neuropathy. He treats autoimmune-caused peripheral neuropathy such as CIDP. His treatment has tentatively shown some success in Scleraderma & Lupus as well as MS patients.
Northwestern University Hospitalis a first-rate teaching and research facility conducting a clinical trial with HSCT for CIDP patients who meet very stringent selection criteria (such as having no response to IVIg therapy).
MODERATOR NOTE: EDITED FOR CONTENT.
Michael C Stark said:
A note of caution. Everyone should be very aware that peripheral neuropathy (and here we think of CIDP) comes in very many forms and while there are some well tried and safe treatments that prevent further myelin loss and can rebuild myelin not completely lost (such as IVIg), there is no known and readily accepted total repair treatment that generally works. There are great hopes for some such as stem cell treatment but while there appear to be some successes the bottom line is that as yet none have been generally reported in peer reviewed literature as THE answer.
Research goes on and may one day provide the answer but until then hope for the best but don't really expect it until it happens.
I will go back to my original message "A note of caution".
The research at Northwest may eventually provide the "magic bullet" but right now it is quite selective and specific and focused generically on "autoimmune" conditions in specific cases, not just CIDP. If you are unlucky enough to have an autoimmune condition AND your profile fits their research criteria only then might there be real hope of a cure for you.
For everyone else, and that probably currently means most of the people with the various types of CIDP, there is only hope that these people do eventually find THE answer, that being the one that works for everyone - not just those very lucky selected few where they have some answers.
Be aware, be hopeful, but be cautious.
Hdanhakl said:
Michael C Stark said:
A note of caution. Everyone should be very aware that peripheral neuropathy (and here we think of CIDP) comes in very many forms and while there are some well tried and safe treatments that prevent further myelin loss and can rebuild myelin not completely lost (such as IVIg), there is no known and readily accepted total repair treatment that generally works. There are great hopes for some such as stem cell treatment but while there appear to be some successes the bottom line is that as yet none have been generally reported in peer reviewed literature as THE answer.
Research goes on and may one day provide the answer but until then hope for the best but don't really expect it until it happens.
My son was able to get Blue Cross to pay for HSCT.
He has been in remission and with no apparent need for meds for over 5 years now. Had Blue Cross continued to pay for IVIG & Plasmapheresis for those years it would have cost them way more.
There are clips online of Scleraderma patients who discuss their HSCT outcomes. Scleraderma - another immune caused disease, but not medically equivalent to CIDP.
Though sobering, Dazedand Confused is right on the money. We need these wakeup calls every now and then to remind us we are not a site for the diagnosis and treatment of disease, but rather, we are primarily a support group where we share our EXPERIENCES, for those experiences and our own symptoms are unique to us and although they may seem similar at times, they are not the same, nor should we treat them as if they were interchangeable. The actual and sometimes minute differences lie in the details known only to the examining physians and other paramedical personal.
That’s why DazedandConfused’s admonishments should be taken to heart. The last thing we intend here is that someone we “advised” would come to some harm. This writer, though a physician, is even more prone to make these mistakes. Good Luck and Good Health to you all, Geepster