billwhit1
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December 20, 2015 at 3:01 pm
Yea I go for the second second for this year. My GBS(CIDP) has never come above my waist except the eye and BP control in the nerve bundle. So I guess i’m lucky but this is the tenth time it has struck me in 31 years. I met some one earlier this year who has not had it as long as I have but all of his muscles have atrophied a lot. Example my biceps is still almost 14 in (ah)but there is no loose meat there at all. Other muscles are about the same as before this stuff. I maybe have lost 5% but I’m also 73 years old. My height has decreased by about 1 1/2 in was 6-4 now 62 1/2″. So Im thankful but the repeated loosing of feet, leg ability to move around is getting old. There are other things like nerves firing at random,lose of balance, inconsistent eye control (seeing double). Loss of reflects below my waist. I’m on a roller-coaster with the BP, 2 stroke also in the last 5 years. I recover some what and now that we have IvIg I don’t have the dreaded Hospital infections from PP or the aggressiveness that Prednisone causes.I’m running on but I think exercise between the boughts have helped me recover each time. Another but, cancer survivor, falls broken bones,and my brains full up slow down it seems like it will get me.
December 16, 2015 at 10:50 pmHey
I’m still here. My CIDP is on the rise again. I’ll try to get back to you later. My second first IVIG was Tuesday and it did not go so well this time. I’ll get easier as I get more. Take care
laterDecember 16, 2015 at 10:47 pmHey
Absolutely. My BP goes crazy. I get meds then when I take them BP dives, meds stop and it goes to the roof. CIDP and MS are sisters. Gross failure of the immune system. CIDP/GBS cells attachk outside the cord and MS within. I have all the MS symptoms except scars on the brain and cognitive problems. Anyone who has eye problems can find out where the 8,9 10 whatever nerve in the base of the brain is being damaged by your own immune system. My neuro id the nerves that cause eyes to malfunction and we see double. I had the eye surgery after 15 years of no CIDP. One year later CIDP and my eyes see double again. Ahhhh, when will it stop!December 16, 2015 at 10:36 pmHey Gang
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).December 5, 2015 at 12:49 pmBy all means yes ,exercise bike. PT would be the best advice as that’s their field, not sales but appropriateness of the style of a bike. My best guess and its a guess is to beg borrow or steal a very light one with no extras. Extras like TV, fan, counters, timers bells whistles. They can get very expensive. Go very slow, if its not a good day don’t do it but set a goal. Even the floor peddler, not one you sit on. You can stay in a wheel chair and do it. I’ve also got osteo a, a very bad set of disc/bones. Just laying on the floor and drawing my leg towards my chest cause me to weep. I set small goals and took my pain pills. After 10 years or so I can touch my toes without pain pills, but slowly in all measures. Keep driving (slowly) but make progress. Also think about other stuff, not why you can’t do.
PO’ed yep CIDP for the 10th time since 1985. What, once every 2 years ? Naw my last break was 2000 to 2015, thought I had beat it. Then the first of this year and again DR diagnosed last week. IVIG again next week. Probably the only reason I’m mobile is that I refused to back down and let it “Heal”on its own. Take an active part in this crap refuse to say I just can’t. Are you EC or WC?December 4, 2015 at 5:41 pmHi
Billwhit1 please I’m no bull 🙂 I reread your note 8 years is a long time. Rather then a trike work on a pedal bike. Exercise every way you can. Don’t pick up anything unless it challenges you physically. So much for that i’m pissed off just now.December 1, 2015 at 9:00 pmResponse to theBudwiziferr. Pt shows you how to do it the rest is up to you. From my wc I drug up the weights and threabands. You can, no drive no thrive. Ask a PT they’ll tell you show you and evaluate you. Even if they are crappy don’t let that get in your way.
billwhit1April 28, 2015 at 4:39 pmWell 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?April 27, 2015 at 2:30 pmOh 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 26, 2015 at 6:22 pmSpinner –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 26, 2015 at 12:19 pmYou 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.
April 5, 2014 at 9:10 pmI also had nerve conduction tests great we (The DR Sees results Great what is he doing to stop or revers any progression? If Prednisone,IVIG, Plasma Plasmapheresis not been the coarse of action, I’d look for another Dr. I went to MAYO in 84 and they even refused to use the word GB, but yea there is nerve conduction damage go home and maybe try Plasma Plasmapheresis I did and we had to borrow a machine from the wonderful organization RED CROSS. A Kidney necrologist Dr knew about separation the red cells but he did not have a machine or person to operate the machine. Again RED CROSS found a qualified Nurse and one of their persons to observe her and see that the hospital closet assigned to us was adequate. It worked for about 2 years. In all 8 times, I ran out of good places for a central line. But thank GOD I’m 71 now with residuals (gapbrine, nerve stem problems) Lots of other 71 yr things but I can ride a recumbent bike for 5-7 miles in 1/2 hr. Thats 80 to 90 pumps per min. So hang in there, get another Dr’s opinion and pray to your maker.
bill whit long time since postDecember 7, 2006 at 5:27 pmYes I’ve been fighting the blood pressure regulating sys for three years now. I take Atenol/Noravas/Hydrochlorothy(somthin) and Clonidine depending upon parameters. Its a daily chase to keep it from going to high then to low. It seems as if I touch the BP it tries to evade any routine med control.
I have other functions Bladder/bowell that are on the fritz but they are suspect from maybe MS and age (64).December 7, 2006 at 4:49 pmYea first time only about 6 months and they back dated benefits. Be ready to accept the final conclusion to your specific case. That it is permanent and total and they will accept you Dr’s diag
Bill WDecember 7, 2006 at 4:44 pmYes I had CIDP as measured by Protien in the spinal fluid and all other Symptoms and no Lesions in the CNS(brain) and later(2 YR) with all CIDP symptoms the same we found Lesions in the brain consistant with MS. I have been on Beta Interferon A for three years now and have no new Lesions in the Brain. Some reflexes are returning but most symptoms remain. I remain hopeful that the MS thing is under controll and I can make it with the rest of the stuff.
Seems like what ever causes the Meylin (oloi’s) to be destroyed can enter either peripreal or and CNS.
I function frairly well but since my CIDP came only up to my waist (eyes also) I can get around on my own. I had cancer also and that causes more problems. Oh The CIDP/MS is into my Blood pressure regulating system and causing more havock. Ah well we all carry some rocks.
Bill W
