April 26, 2015 at 12:22 pm
I’ve had at least 7 repeat of this stuff from 1984 to 2000. Nothing since 2000, except Tuesday I noticed foot drop (right foot) I was able to see my Neuro DR on Friday. Yup, that what it looks like. He set me on immediate Prednisone and scheduled EMG and NCS. That EMG wears me out physically , wish there was an alternative. Also I’ve never had a Nerve study. He also mentioned IVIG. Wow! lots of progress since the early 80’s. We had to borrow a spinner from the red Cross and set up all the necessary paper work and procedure’s for our hospital. Fortunately a new Dr who had a little experience with the spinner and GB treatment. But no IVIG and a real fight to get 5 or 6 Plasma Pheriosis treatments with insurance.
I had hoped I was done with this stuff and my Vascular Dr. said no more central lines. I even stopped coming to this board as I wanted to move on. Oh well at 72 I’m due to slow down anyway.
April 26, 2015 at 12:19 pm #110796 EDIT | REPLY
You know I’m one of your original members way back. This organization had barely started with Mrs BENSON (?). My wife called her sometime it the 80-85 time period. We had one hard time getting the Spinner set up,a place,a Doctor (3) and a billing procedure. My Neuro group had not done this, my Kidney Dr had not done this for GBS so we were at square 1, with Mayo Clinic saying try Plasma Pheriosios. The only Dr’s who had half-way participated in this was the Vas-Cath guy. I’ve had three vas-caths get infected and boy is that trouble. Ive even been through at least 2 forum boards going down, with all old information lost. I used to converse with another GBS’er a Dr in England. I dont remember his name but he responded to everybody’s e-mail’s. I did a little reattach concerning the Neuro changes causing double vision (Some nerve group in the brain stem. I also dug out instances where the blood pressure control was affected and several other auto-control functions.
This board seems dead, maybe there are other boards with a little more traffic. I copied and pasted so here is where I am.
April 26, 2015 at 3:40 pm
I’m not familiar with the term “spinner.” What is that?
Is the reason not to have a central line because of age or something else? When I was treated for CIDP I had a Quinton catheter in my leg (for plasmapheresis) and a PICC line in my arm. Both were trouble-free for me. What was your original primary treatment? Have you had plasma exchange (PE) before? It served me well after IvIg seemed not to help much. I don’t know how PE is done without a Quinton, however.
April 26, 2015 at 6:22 pm
Spinner –Centrifuge if that how its spelled It spins at an approiate rev to separate the various components of your Blood. I come out of the Oil Industry and we called it cracking. Two different methods of separating components of a given liquid. My friend I have had PP 9 times and it worked well for me. The problem for me now is that the Vascular Surgeon say no more (probably my age also). It got infected twice (different bouts) and that is real serious. The type of connection (hook up to your blood system) will be decided by how fast the Neuro guy wants it done, rate of exchange times length of exchange times days. Ie 88 liters for 2 hours each for 10 days separated by 2 days. Ok So it would be two hour sessions in 20 days, Those are fictions numbers but the Neuro guys usually figure it and are guided by the people who operate the Kidney Dialysis. Same Machine little different procedure. There are probably some standards now but my experience was breaking new ground, so they tried this and that combination of liters,rate,duration and sessions over different days. Other parts of the country had been doing this.But not many
THE First time on I went on Prednisone only poor results and very slow recovery. Next time I went to Mayo, DR. Bartlett ?? I think. Anyway he diagnosed myelin damage resulting in poor or no responses to nerve impulse transmission.He use different words but never GBS or CIDP. He said PP usually helps, go home and try it. So I went home gave the letter to my Neuro guy and he said where do we start? We (wife and I ) called Red Cross to borrow a spinner (Dialysis machine) and the PP did work.
My recent on slough is after 15 years of no problems , other then a few residuals, I thought I had it made. I’m not sure this stuff ever turns you loose.
April 27, 2015 at 1:20 pm
If the Mayo doctor did not diagnose CIDP, ‘He used different words never GBS or CIDP’ it is a good idea to have a Neurologist familiar with CIDP run a new set of the EMG and NCV tests because they are often used together to help obtain an accurate diagnosis. There are other conditions and all of them need to be either ruled in or ruled out, if possible.
Some on this site have suggested taking this report to your doctor. Doesn’t hurt to read and understand it yourself either.
Best of luck to you.
April 27, 2015 at 2:30 pm
Oh yes but in the early 80’s they did not have any Organization (GBS-CIDP) or Dr pushing to get a handle on Diminished response time and actual nerve conduction studies. While I was at Mayo ( Rochester Minn)a female Dr did the nerve conduction testing. The procedures and test guide lines were tedious and very nerve racking for me. She measured response times every where she could, It took over several hours to do all she had to do. She was through and reported the timing and probable cause to Dr. Bartleson who wrote the letter to my Neuro. I was breaking new territory here in Georgia.
Funny how things come around, My Neuro Dr Retired several years ago and he handed me over to a younger Dr. On our first visit we reviewed my history and when I mentioned Dr. Bartleson he lite up, He trained under this Dr. at Mayo and there had been many new things uncovered. He (new Neuro) was high on Dr. Bartleson and spoke well of him. Ok I’ve been seeing this new Neuro since about 2003 and I had very little problems so Neuro Dr and I just kept in touch. Two weeks ago We went in to see this new guy. I and the wife knew exactly what was going on with me. He questioned me and then looked up and said yep thats how it starts. Ok NCS and EMG (both test took less the 15 minutes total) were ordered and of coarse I flunked big time. My reasoning was well we sorta guessed the problem in the 80’s applied a treatment and it worked. Since that time the procedure (PP) came to be the best treatment until IVIG came along. We ,old Neuro and I even tried some of the MS treatments (Avonex). I have and had all the MS symptoms except Cognitive and Seizures. Emotional Changes were probably forced on by Treatments of Prednisone in the first few days before PP. (I do not tolerate that stuff it makes me very aggressive).
At this point I have been fitted with a brace to stop my foot drop from causing me to fall and break another bone. I am also (in PT) having the stimulator applied to keep the foot drop muscles from atrophying from no use. I am also going to see an Oncologist (?) tomorrow. I remember that my old Neuro sent my spinal fluid to California for testing. I ask why there?, his answer no labs on this side of the Miss could do it? I ask what are they looking for ,he said protein in the spinal fluid ?? Anyway my new Neuro had the Fluid tested close by and the report came back that there was something found in the test that is consistent with cancer. Ok In 94 I had a big Cancer bought, so maybe there is more. We’ll see tomorrow, after that I should start IVIG. The IVIG has been ordered but we have yet to commit to a Company. They seem to want to do it in my home? I have no problem going to the outpatient Oncology transfusion center, so why the extra coast of a in home visit? I use that unit at least 3 times a years for either for iron, blood or the med for Osteoporosis. I’m going to rest now as the Morning PT just flat wore me out. I have a horrible time walking straight (wall walker), I can not look around or hold anything and keep a straight coarse. Looks like I’m inebriated and need another shot.
I’m trying hard to ketch up on the cause and effect of CIDP that have been uncovered since I first was infected ?? How ever I got it, why and how to fix it.Thanks for the forwarded information.
April 27, 2015 at 4:58 pm
Thanks, I know what a centifuge is. I had several plasma exchange treatments, which use a centrifuge in the equipment to separate the blood, as you say. If it works for you, stick with it, but it is understandable that insurance companies won’t want to pay for any more treatments than necessary. You need your neurologist advocating for you on what you need. IvIg is expensive also. Generally, one does one or the other, not together.
It is not possible to identify a cause of your CIDP. It is chronic by definition, but can be in remission for a long time, indefinitely, as you know. As far as fixing it, there is no treatment considered a permanent fix except the stem cell procedure. That procedure is still in clinical trials as far as I know, and it is doubtful you would qualify because of your age.
It seems to me that you are not getting very good support on this condition. When I had the spinal fluid protein test it was done in the hospital (or nearby) and the result was available the next day. They also had the plasmapheresis equipment and trained nurses in-house. Perhaps you are in a rural area. But I don’t know why you would need a spinal test if you were previously diagnosed with CIDP and successfully treated for it.
April 27, 2015 at 8:13 pm
I reckon GH put into words along the lines of what I was thinking, but did not speak out, when he said it seems to him that you are not getting very good support.
This Foundation lists locations of 23 so-called Centers of Excellence. Maybe you can get to one. Mayo Clinic (Rochester, Minn) is one of them and it is a great place. If you are still being seen there you are lucky.
The Clinical Trial for Stem Cell Transplant (SCT) is still recruiting with a list of inclusion and exclusion criteria. Age greater than 65 and a Prior history of malignancy are two exclusions. However, there have been case-by-case exceptions.
A doctor at Mayo Clinic Rochester commented to me that he felt the Stem Cell transplant was rather like using a nuclear bomb on an ant hill. Yet, he doesn’t have to live with and deal with the chronic (never ending and inexorable) decline some unlucky CIDP patients experience. There used to be those on this forum stating unequivocally that the STC helped them. Seems like they were laughed off the forum. Too bad.
My own experience with home based IVIG infusions was a nightmare. First of all, Medicare has specific disability (homebound) criteria that must be met. Those criteria include “If a patient has an illness or injury and a normal inability to leave the home or it is a taxing effort to leave their home, they may qualify. A patient is considered homebound if it is a taxing effort to leave their home and they have any of the following (omitted) and In addition, there must be a medical necessity for the services provided, and the services must be given under a physician’s Plan of Care.”
Perhaps you meet those criteria.
Secondly and Far Worse is the lack of suitably trained IVIG infusion certified nurses to come to your home. You cannot have a just out of needle sticking school someone who knows nothing about IV line size and drip rates, yet alone what to do if you get an infiltrated IV. Or, if you start to have a medical reaction. Or how expensive the liquid is. I once had every available ‘sticker’ from the home care company fail to get a good stick after an infiltration. Their answer? “Oh, you have to throw the rest of this away.” Yeah, right, not my $8,000 worth.
And then, add IVIG shipping and refrigeration problems on top of that.
If your doctor were really familiar with infusing IVIG, picking a company would not be a concern. It would be part and parcel of his written prescription.
You stated “they seem to want to do it at home.” Who is they? Well, it’s irrelevant if the doctor sends you to an infusion center.
Return to you are not getting very good support.
April 27, 2015 at 8:45 pm
An infusion center is definitely the way to go if you need IvIg. I had mine in hospital, but didn’t stay on it. We switched to PE.
There are also drugs which can reduce the tendency to relapse. Prednisone is not good for long-term use. I take mycophenelate mofetil (trade name is CellCept).
April 28, 2015 at 4:39 pm
Well Oncologist today to make sure the Protein in SF is not Cancer related in any way. All the Doctors I had with my first 15 years of CIDP have retired, every body is to young and without experience. I’m not sure that the GBS-CIDP-IVIG group are relevant any more. Sure they are but as I talked to new DR about treatment, realizing that IVIG had not been invented much less a protocol for treatment as it is now. When this stuff first hit me Prednisone was the only accepted treatment around the World. There were area’s that were experimenting and finding success but Medical procedures are slow to change and Doctors are (were) reluctant to follow some experimental stuff. Even Mayo (Rochester Minn site of excellence??)could only suggest that PP might be helpful. (Dr Windebank)
On this Home application versus Out patient infusion lab. Ok, they with the home stuff is the package you are talking about for a Doctor’s Plan of Care. Its not irrelevant as an infusion Lab may be selling a different brand of IVIG then what the Doctor would be writing orders for. As I understand it there is a difference both in application side effects and long term success of the treatment. Were talking big bucks here so all stand around holding out there hand for their share. You can’t make money on small jobs get the big ones and rake in your percentage, they won’t miss it. Cynical I know but, and I’ll try to keep it down as I swallow these enormous price tags. We also have the ego stuff to deal with, like all the Hospitals around the country advertising that they could handle everything like Ebola. Right now those big guys are crawfishing back out, no,no, send them to Atlanta CDCC. Ego’s and big bucks.
As you can tell I’m feeling feistier today ready to run my five miles and to heck with the harm it might cause. I guess I’m a little miffed as I was sure that CIDP was over after 15 years. Sure I have constant reminders (residuals) of the harm it cause me but I worked around this stuff successful for 15 years. I guess I was lucky to get those years Huh?
May 1, 2015 at 11:16 pm
I remember you from 10 years ago, when I just got started down this road. I’m sorry you had to come back. I have never had an EMG, just an NCV. NCV is like getting shocked, pretty harshly at times. Well, not like, that is exactly what happens. It is painful when the shock happens, but otherwise it is easy. I never felt like I needed any significant recovery time. If you have a mouthpiece for sports or something similar, take it along. It is safer than a lead bullet 🙂
December 16, 2015 at 10:36 pm
Well I had my first IGIV yesterday for the second time this year. I report that it has me again. In May I did IVIG and 4 months later ,the Dr stopped IVIG and declared you a back to where you were before May 1. Ok I did feel that way also . Just 2 weeks ago my feet and legs got that old familiar feeling again. No foot drop yet but weakness and the numbness rising in my legs. My feet were not there, the burned but no other feeling. I was using a cane last week and my attention was elsewhere and I realized that the cane was longer then normal. I looked down and the tip was on the top of my foot. Funny yea but not really. I’m not going to let this time get to me . I’ve made it through 10 times and 30 years. I rode my bike 3 miles yesterday and will ride it for 6 mi tomorrow (within 1/2 hour).
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