Have CIDP-Could really use input on Lot

jerimy, thank u for replying. wish i got back here sooner. the problem is w/getting medicaid. they would pick up whatevr medicare doesn’t as well as provide for inhome care and more. unfortunately, ex got into major trouble w/irs and been in the midst of getting what they need to take the “levy they have off my ssdi check” – !! won’t bore w/details but, one affects the other, affects the other, affects the other – it’s a mess. eventually will get settled- trying to make it thru the meantime. checked into supplemental med.insurance, can’t afford the monthly premium till irs reverses.

i was wondering about plasmaphar? a doc recently asked if i was/will be on that. don’t know much about it yet so don’t know how much more invasive it is than ivig. gotta be bad b/c ivig seems pretty invasive from what docs/infusion ctr have told me. and side effects. which is ok – i;ve been ready to do whatever i have to do even tho no guarantees. i recently read somewhere that some docs are now using chemo for ivig?

sounds like ivig has/is making a difference for you? good results? have you been on it for 3 years?

and yes, my biggest concern and reason i’ve been on top of and pushing docs/infusion place is b/c it does progress (whether i tell it to or not!) – now i’m actually getting nervous. and now is 10 times more difficult than 2-3 months ago trying to do/think ANYthing. it’s a catch-22 and i gotta keep on top of it. its just so frustrating and overwhelming wanting to/trying to and my freakin body ends up winning. don’t mean to whine here – everyone’s gone/going thru their own battles. and i will check out the website. thanks.

again, sorry it’s taken me so long to get this up and running again. dj

[QUOTE=Jerimy]dj,

I have medicare/medicade and I have no issues whatsoever getting my infusions every month. In fact they just doubled my dosage from 30grams to 60 and I didn’t have any problems. Personally I would prefer IVIG over Plasmapheresis but that’s my opinion, PP is more invasive. When I first got CIDP 3 years ago I had a social worker at the hospital that helped me with all of the issues with SSI/SSD and medicare/medicade. If your having issues see if someone at the hospital can help. The longer you wait to begin treatment, the more damage that is occuring. Also I am able to get my infusions done at home trough the hospital and have no issues, that is something else a social worker at the hospital should be able to help with.

Check out [COLOR=blue]cidpusa.org[/COLOR] (cut and past into browser) for lots of information regarding treatments and other related things. I hope that helps with some of your questions.

Jerimy[/QUOTE]

sorry about that. thank u so much for the reply. can’t believe how much all the information/experiences of others helps.

good point that most docs never dealt w/cidp. finally finding out it’s “rare” explained why i’ve been looked at like i’m nuts when i’ve been asked (i.e., er room, etc). i did read about gbs and saw how similar. i do have articles and such. never thought of bringing anything in tho. it’s worth a shot. thank u.

yes, yes, yes, as far as speech problems, bp, body temp. more things off my “am i just crazy” list! i didn’t know this tho and i found that i have to keep checking, researching b/c the more i know, find answers for, the better.
–i’m going to assume that not being able to palpate pulse and DTR (deep tendon reflexes??) dropping part of it also. (from my last apt)

as far as being hereditary or not – if i understand u correctly (a function that’s also going-i am frustrating people and trying so hard not to, very upsetting). so the tendency can run in families -for autoimmune? – but cidp itself is not hereditary? hopefully i’m not repeating things in my original post but, i did find that the supposed gene for crohn’s and for cidp are the same. my son has crohns. i think i’m trying to find answers to help on research that they are still doing and such limited knowledge by docs/neuros so far.

as far as any speech/cognitive, etc. problems that certainly seem to be due to this as seems many people in the same boat, wouldn’t demyelination affect this. i’ve been trying to check on that also. also for some information as far as the process of or progression of demyelination. i’ve gotten different answers and even in articles. i know the myelin gets destroyed, then what. but it can repair/replace itself w/say ivig or such. if i’m making any sense here.

i thank u for the words of encouragement as well. i’ve learned more on here than anywhere as well as just knowing these other “symptoms” are part of it and i’m not nuts. dj

[QUOTE=Suzanne]dj-

Sorry you are feeling bad. Maybe contact with others who understand what you are dealing with will help. I can’t answer all of your questions, but I’ll try to tell you what I do know. I’m a GBS patient, but there are lots of similarities to CIDP.

Yes, it is discouraging when the docs say they “don’t know”, but most docs have never actually treated a patient with CIDP and really don’t know much about it. I’ve found it helpful to “educate” them a bit by printing out articles (from this site and other sources) relating to my disease. Most docs don’t have (or take) time to do a lot of research on these things. Somehow, showing them an article written by a medical source will help them to understand what is going on and often spurs them to try to help.

Fatigue is really hard to deal with, especially compounded by stress. You are right to try to limit your stress, since it does make symptoms worse.

Pain is tricky. Many doctors are very reluctant to prescribe narcotics, unless they know the patient fairly well, and have tried all other avenues. I do believe you when you say that narcotics can help your pain, although most medical literature says it’s not effective for this. I find that it’s effective for me, but fortunately, I only need to take it intermittently, and my doctors have been very understanding about it.

Speech/word problems – if you mean searching for a word frequently, or hesitating when you are speaking, then yes, this is something that a lot of us
deal with. I am 3 years post GBS and still sometimes have difficulty with it.
Don’t know why, but obviously, it has to do with damage from the disease.

Fluxuating blood pressure and body temperature is also a common problem. This is caused by damage done to the autonomic nervous system. I don’t know if it will go back to normal or not. Everyone heals differently.

People with one autonomic disease are more prone to have another, and there does seem to be some genetic predispositon, although it is not hereditary.

Hope it helps to know that these things are just more of the residual problems from the disease. Some of them may go away, others not, some may improve or change. Not an answer, but the best I can do.

Keep your chin up – you are going through a difficult time now, but it won’t always be this bad. Once you get your legal problems behind you, it should help enormously.

Best wishes,

Suzanne[/QUOTE]

i so appreciate yr response. i had asked about some of these with no answers so to know it’s part of this makes all the difference. i am sorry you, or anyone, has to deal w/it but, at the same time i can know it’s not just me and the symptoms fit. the veins one and feet/hands discolorations are the bizarre for me b/c it looks like it’s out of some horror movie. sounds like ivig’s been really beneficial for you also. it’s great feedback to have b/c it will help keep me motivated to keep on them or find another way.

yea, been giving serious thought to trying to find a different specialist. if i can get some type of insurance squared away it will make all the difference. unfortunately i’ve found that to be the reality of it all.

haven’t found any support groups near me. not yet anyway. u hang onto yr hubby – he sounds like a keeper. im glad he’s there for you. dj

[QUOTE=deedee43]Sorry you are so down right now. I know what you mean when you say there are days that you just want it to stop. I found that when I was totally symptomatic that was exactly how I felt. This disease not only debilitates your body, but your mind as well. It seems almost hopeless when you are symptomatic, but after IVIG my spirits really buck up! Don’t take no for an answer. If this neuro isn’t meeting your needs, find one who will. Yes, I find speech doesn’t come easily when I am symptomatic. Think it is because I feel so awful that my brain just can’t keep up with everything that is happening in my body! I also have fatigue (better about 2-3 weeks after IVIG), temp changes (I used to be cold all the time, now I find I get really warm/flushed), and I notice as the symptoms increase that the veins in my hands get really big – almost as if the rest of my hands are “deflating” but the veins get bigger. As for muscle atrophy – I was told by neuro that it comes with this disease and physical therapy should be done to build up strength. I broke my leg during my first bout, so really had a problem with atrophy. Now (3 months later) my leg is 80% healed and I am doing exercises and working with hand weights to build my muscles. Hang in there! I find that I wax and wane in emotions and symptoms. Have you tried finding a local support group? This discussion forum really helps me, but I also have a GREAT husband who supports me 100%. Best of luck, and good health![/QUOTE]

cd – actually, this is exactly what i WANT/need to hear. i’ve gotten more answers/information in the little time on this forum than the past, god almost 3 years now, from asking docs. never liked going to a doc in the past (thankfully really never had to other than routine visit), i can’t stand it now.

i go/went in with the attitude -just tell me what’s wrong if anything and what i have to do to fix it. i’m not a worrier, i don’t freak out, i’m direct w/you please be direct w/me. found out it doesn’t seem to work that way. too many questions, new symptoms i don’t understand happening, and “attitude” from doc and/or whoever the latest new pa is. i ended up getting frustrated, trying to be “pleasant” and understanding their admitted mistakes. it goes on but, past is past, i’m not gonna whine and certainly not going to waste anyone’s time here w/the details. i should have known or realized or done things differently and that’s what i’ve been trying to do. it’s much more difficult now b/c of progression. so when i hear back that others have/had the same things going on at least i don’t feel like i’m crazy.

your clarification here is more information and makes more sense than the hour long visit i had in 6/05 from the doc about the disease, starting and about ivig and why, if it worked at all, i’d most likely have to be on it the rest of my life. a lot to be hit with and try to understand so i started also checking for info/answers online, articles, etc. tho, at this point, i think i should maybe try and concentrate on finding different neuros. i called duke university a while ago. my son’s best friend is a doc there. long story short – just had to fax my records, get the termination letter from the ridiculous insurance i had and go. if you’ve ever dealt w/ins companies shouldn’t surprise anyone that process was a battle and took forever. again, past is past. that may be my best bet now.

well, sorry for rambling here or venting i guess. it’s very very helpful information and i appreciate it. i made sure to lock this place in the computer so i don’t lose it again b/c if nothing else my thick head realized that i do need support. thanks again, dj

[QUOTE=compactdisc]Hi DJ

Just wanted to clarify something for you – ivig does not “restore myelin back to normal 100%”. The purpose of ivig is to stop the inflammatory attack on your body by the immune system – then your body will have a fighting chance to repair itself. Once you have stabilized, each of the problems that have developed can be dealt with by your doctor (for example physical therapy, pain meds, anti-depressants, etc.) Unfortunately, the only thing that will restore myelin in the perpherial nerves is schwann cells. This is a slow process depending on how much damage was done, and with chronic illness, keeping the relapses from causing more damage (more ivig). I know this is probably not what you really wanted to hear, but at least you will know what you are dealing with. Now that you’ve found this forum, you’ll be able to diffuse a lot of anxiety over the unknown with the supportive help found here.

best wishes
cd[/QUOTE]

jerimy, thanks again for the info – moreso for the words. amazing, that a few words and offer to help can have such an impact on s/one’s life. altho, my oldest son is jeremy, so there ya go.

i’ve gone thru the entire health system here-long story. (i dunno, maybe b/c it’s nc and i’m a transplanted “yankee”) but, i did finally go in and meet w/soc.wrkr in hospital w/regards to the “domestic violence/criminal situation” from my ex. thought i’d pass out b/c she has actually HEARD of and knew a little about cidp! so at least it’s a start.

i have a consult w/a lawyer this week (cross fingers and toes if ya can that s/one there will take my case w/out $ upfront). apt w/pain center on 27th (went once-AWFUL) but i’m gonna stay positive and what happens happens. got the neuro on the 4th – gonna lay it on the line & hopefully i’ll have gotten info about duke and/or other options before then.

if/when u feel like it, i’d like to hear about yr situation/experience as of 11/03. hope yr doing better now. on here, em, per.msg, whatevr – up to u.

if i need to, may take u up on per.msg. u may be sorry tho – i’m locked in here now for the duration. hopefully these posts will start being shorter than a book each time! dj

hi robin, my heart really goes out to you and your son. my oldest son was diagnosed w/crohns his last semister of master’s degree. it’s one thing when things happen to us and entirely different when it’s yr kid. as far as ms, yes tests done and not ms. read up a lot on it myself at the time. as terrible as this is going to sound (and certainly don’t mean anything by it) – in some aspects it’d be easier if that was it. by that i mean the times i’ve said “cidp” to docs/er rooms/etc. and been looked -and talked to- like i’m nuts. i hadn’t realized that it is as uncommon as it is. my thoughts are w/you and your son’s treatments. seems as the ivig is helping. will he recover completely? dj

[QUOTE=Hunter Grays mom]hi dj, my son gets IVIG every week. his left arm is paralyzed. they want to see if the nerve will regenerate any before thinking about a tendon transfer. I dont want to worry you, but have you been tested for MS. I actually was doing a lot of research this evening because they found a lesion on my sons MRI and anyway following the research , I was reading up a lot on MS. You had listed quite a few of the symptoms. MS and CIDP are both demylinating diseases. Just a thought.
About your Stamina. My son could only play for about 10 min or so before he would have to rest. He looked tired. I must say if nothing else, the IVIG has given him his strength.
best of luck,
IN OUR PRAYERS,
Robin[/QUOTE]

dick, first off, thanks for sharing yr experience w/duke. that helps while i’m figuring out the best thing to do.

secondly, you’re not rambling at all. you are talking about acceptance and perception in dealing w/this. very insightful and very helpful. couldn’t have put it better. thank you. out of everything this disease can do or cause as it progresses, the worst for me has always been the progression of physical limitations and learning the hard way that i can fight but my body will eventually win.
thin line between stubborn and stupid.

[QUOTE=Dick S]dj

I went to Duke for five years or so. My neuro was great. There are several neuro’s who work there who are spuuosedly pretty good with CIDP. Mine was pretty good.

Regarding other things:

I have been working through CIDP for many years now. I was only diagnosed in 2000, but had been suffering symptoms for 10 years, although they were slight. I went on SS Disability 2005.

There are many parts to CIDP. The worst part is the “C”, chronic. It stays with you. For some people CIDP is more painful than with others. I have some bad pain, all the times. Dealing with it, just dealing with it constantly, and the way it affects how you move, how you live, what you can do, what you cannot do. It gets frustrating. That fact that the CIDP is so Chronic, that it won’t go away, that you have to deal with it forever. It gets depressing too.

The only way I deal with it is to accept it. There are some things I have to accept. I have to accept my limitations, and grow past them. The things I can do, I still do. I try to do as many things as I can. When I cannot do something, I try to get someone else to do it. By this time, my family knows my condition, and they actually try to stop me from doing more. I guess that is good, they try to protect me from myself. When I feel better, I try to do too much, and wind up knocking myself back a little. Or sometimes a lot, if I way over do it.

That is my life now. I do what I can. If I cannot, I ask for help. If I do too much, I pay the price. It hurts a lot from time to time, but I am always reminded, every hour of every day, that CIDP has changed my life forever.

Somehow, defining CIDP in those terms allow me to put it in a box, it gives it a place and a function. I have sleep apnea and I need to use a CPAP at night. I have reconciled the fact that I will need to wear the CPAP mask the rest of my life. If I do not, the sleep apnea will cause severe problems in my life, possibly causing death. I choose not to die, so I use the mask every night. Easy decision.

The same with CIDP. It is what it is. It affects me in the way it does. It changes my life, and will continue to do so. This is not giving up. It is accepting my condition and moving forward.

If people knew what we (CIDPers) had to live through each and every day, it would astound them. But we live through it because we have to, we have no choice.

Anyway, I know it is long and rambling. I applaud you for making it through all of your challenges. Your life has certainly had it’s share of issues. CIDP really hasn’t made it any easier for you. But you are gaining knowledge, and with that comes the comfort of knowing where you are, and maybe a stratgey of getting to where you want to be. Keep your eyes on the prize. You will make it to the end.

That care
Dick S.[/QUOTE]

thank u jerimy,

[QUOTE=Jerimy]dj,

my email is [B][I]jerimyschilz at hotmail.com[/I][/B]

You can email me anytime, I am happy to help in anyway that I can. I wouldn’t offer to help if I didn’t want you to take me up on it 🙂

Jerimy[/QUOTE]

thanks cindy. yr exactly rite and on target. i am still amazed and moved by the people here.

[QUOTE=cidp kid]dj,

It sounds like you are on the right track, sometimes it is hard to figure out where just to begin. It sounds like you have some good advise from everyone. That is the thing that is nice about this site, people truely care and want to help each other. A 2nd family that understands sometimes more than the biological family.

Keep making progress on your needs and keep asking the questions and for help when needed.

Best Wishes,
Cindy[/QUOTE]

thank u for your input. i’m glad you’ve found something that works well for you. take care,

[QUOTE=gvazir]Hi dj,

I was diagnosed with chronic neuro lymes conclusively last year in August and this January diagnosed with CIDP as a result of the lyme’s. Lyme’s is notorious for triggering an autoimmune attack. My doctor is based in New Jersey if you are interested message me privately and I can give you her contact information. I have a lot of speech issues that increase with my symptoms i get chills, i never sweat, i cant climb up a flight of stairs without losing my breath, I have a neurogenic bladder an enlarged prostrate and I still have not been on any treatment at all for CIDP as yet however my doc recommends IVIG 2x a week for 6 months. Recently she attended a IACFS conference this is for chronic fatigue an fibromylgia. A lot of patirnts with chronic lymes or other autoimmune dysfunction suffer from CFS or FM. For a while she had taking the following supplements and I strongly advice anyone on this forum to be on these because they can dramtatically improve the quality of your life as well as improve fatigue and vascular health

l-carnatine 500 mg on an empty stomach, 3000 mg omega3 but make sure it is pharmaceutical grade or the label says that it has been purified of mercury which is incredibly harmful to any of us please take the omega 3 with food and the 3rd supplememt was CoQ10 this is not considered a supplemet in Europe but an essential medicine. The combined effect of these 3 togther can even help those with poor cardiac functon. This will give you some boost with energy. The prescription medicine she prescribed me for mental accuity and energy was provigil and it works okay for me. I am taking so many anti spasmodics and a high dosage of neurontin as well as klonopin which have a sedatory effect so I really need to time my provigil to be effective i take 200 mg i split the tablet and and take 100mg at different times of the day especially atleast 45 minutes after a meal. Provigil is different than adderol or ritalin because it is not an amphetimine. As far as pain meds I can’t do narcotics because they have a bad effective on my digestive system but if you are in pain and can handle them get your doc to prescribe it for you. My doc she prescribed duragesic patches of upto 100mg for me, i did not tolerate it well at all and they are ridiculously expensive as well as regulated. if the pain you are expereincing is in your shoulder or in your joints Trammadol works really well for it. If you are taking neurontin if you can take paracetamol along with it it enhances the effect of both medications (this is something i read on a post here and found it truly works). My doctor works really ahrd to be up with the latest in research and based on her recent conference notes there are other supplements and tests and medications to work alongside IVIG treatment. I would recommend consulting with her if you like she is really god with what she does however she is not a neurologist so you still need a good neuro for your psychotropics (i dont have one as yet at all).

I was very moved to hear about all the personal problems that you are having to cope with and somebody earlier responded that it would help in your healing if you could not take on so much stress as that is as detrimental and probably times that you find that your symptoms are most accute. I never truly understood what it means to be carrying unresolved anger, chronicly living in stress. I was in a hospital last year for 2 months where I had the good fortune of meeting a really wonderful lady a practicing psychologist who coaches exexecutives in how to undo their stress. Her name is Janine Sagert and you can access her programs on www timeoutforbalance dot com. What was wonderful though was Janine is a friend of a spiritual teacher (if you can call her that) Byron Katie. Byron katie is very well known and followed for a program called THE WORK. I can assure you it is called the work because it is truely work but Janine took 2 hours to have me work through the work sheet that can be downloaded from katie’s site. www thework dot org. It looks really simple how difficult can it be 6 questions to answer and 4 questions to apply to each answer so so easy. The topic I picked to work on was my anger towards all the doctors i saw over a period of 2 years who i saw as the most disgusting creatures on the planet for letting me suffer the way i perceived that I was suffering without as much as offering me a tylenol for pain. the key words here being “all” doctors and “my percieved suffering”. Suffering, pain, negative emotions, stress, anger are all personal expereinces that any individual finds them selves encountering at at least some time within their life time. When these thoughts of stress/anger/guilt / any negative emotion becomes chronic it leads to harmful effects on your helath and extremely harmful with individuals with autoimmune dysfucntion as they are a known “probable cause” for triggering even the onset of GBS/CIDP. Getting to the point doing the work for the first time with Janine all I was experiencing at first was an increase in my anger automatically I clubbed janine with “all the other doctors” who did not have any compassion for me and i could not believe why was she asking me to turn around how i perceived in my mind the doctors treated me (which was so real a thought and possibly even a true) but it was still a perception in mind of what I felt like by their handling of me. To turn this around meant i had to in my mind imagine I treated the doctor with the exact humiliation I felt that the doctor had treated me. It was really hard for me to do this and I mean really hard to turn it around but I did for the sake of the exercise. I turned it around and I got the shock of my life I realised that all this was unnecessary mental chaos in my mind, i could never truly no for certain if the doctor treated me like a “leper” nor could i be uncertain that I never thought of all doctors in plural good or bad as “disgusting lot of money hungry jerks”. certainly there are a lot of excellent doctors that cannot be clubbed in with the whole lot as the same as we can be certain there are good things and bad things that happen to us all the time. The freedom was recognising that this was a battle in the mind, the mind being “my mind” so part of the work is what would i be without the thought and the answer to that was i would be ” so much freeer from stress and this immediate wave of lightness fell over me and i went hmmmmmmmmmmmmmmm wow this stuff is interesting and I cannot describe in words but a huge knot deep inside of my body started undoing from that night forward and I cant promise you it stays forever unknotted or you wont expereince negative emotions again. I would be lying. I am headed to a local bookstore tonight here in chicago to meet with a group of people who gather once a month to do the work togther. I had the chance to meet katie in person march first at the same book store and today is my first time going. I know how much it allowed me to undo my stress and really start examining my thoughts and the cost benefit of living a stress free life.

This might surprise you I have no medicaid/medicare/ssd I am working on it now and I go to free clinics and the county hospital and receive no financial assistance for my medications or the cost of living without being able to work but somehow the universe provides me with what I need and I dont stress over when IVIG will happen for me and I don’t live in constant fear and that in itself is so freeing. We don’t know how light life can be when we are willing to make the choice of dropping the dead weight of it all. Making the choice is the key word here in face of hardship yet if you are able to smile and go on to the next minute you have suceeded. I sincerely hope you check out these resources and they are as helpful to you as they were for me. Concpetually and intellectually beleiving something is different from feeling that in your gut so until you dont actually do it concepts are simply that concepts and it takes effort to even live a life free of effort and stress and oxymoron but you will see the sense in this statement when you try it.

Good luck and my best wishes to you and your family feel free to contact me if you have any questions or need any clarifications.

Gopal Vazir[/QUOTE]