Question about my future and CIDP
AnonymousMay 29, 2009 at 4:30 pm
I have been, as we all are, progressively getting weaker. Its been happening very very slowly but doen’t stop. I am 36 now and have been dealing with CIDP for 14 yrs. So far I have severe drop foot in both legs, left hand svevere atrophy and dexterity deterioration and my right hand is soon to follow as its showing signs already. Given that info and that most cases are a little different, is it likely I’ll be in need of a wheelchair in the future? I am very much trying to be proactive but every neuro I see doesn’t want to deal with me and I keep getting tossed around to another neuro. I was in the office of a new neuro last week and I told him I wanted to start IVIG again and said he would refer me to someone eles again to see what they think. I have already had IVIG a few years ago but I haven’t been treated in any way for years accept for pain and new afo’s/ Why can’t I find a Doc who want to help??? I have been scrutinized asa drug seeker because of my age but that doent make sence when I’m disabled and on SSDI. I am very upset about this and need to start Plasma exchange, rituxam, IVIg or something, how can they say “I don’t know what to do with you” everytime I get referred.
May 29, 2009 at 4:41 pm
sorry no info
AnonymousMay 29, 2009 at 5:18 pm
I’ve been through the same stuff. I’m 35 and my feet and hands are slowly getting worse. I’m just trying to get situated as best as possible for a wheelchair future. I hope it doesn’t come to that but I have to be realistic.
Im in SC and used to live in Atlanta. I had to learn the hard way through trial and error that doctors are like any other skilled professional – some are better than others. The most critical thing you can do is find a PCP and Neuro who actually care about you on some level. This will help them not try to kill you through ignorance or not giving a damn about you. Most Neuros don’t know anymore about CIDP/GBS than we do. I research the treatments etc and then I go to my neuro with what I want and he supplies the orders.
I found him through someone on here in the area. I just wanted someone familiar enough with peripheral neuropathy to not be scared to prescribe treatment. I’m pretty sure your docs are scared of you and dont want to offer treatment for an illness they don’t understand. I found most docs in Georgia and SC wanted to send me to Emory University. I’ve been there already and they suck. I’d go to Mayo if it were closer.
If I get worse my current Neuro will get me to John Hopkins to try an immune reboot. That’s my last option. Right now I have had a relapse and discovered that IVIG does really help. Up until now my onset was so slow I could never tell.
You need to break out that yellow support group guide or make a post on here and find out who people in Charlotte, Greensboro and RTP/Raleigh/CH etc see. I’m pretty sure there are some quality docs in Charlotte and Duke/UNC. After you get some names make appointments and interview them. If you don’t like their attitudes or whatever don’t see them again. Shop for a doctor like you would anything else. They work for YOU! Your life is on the line too. Once you get with the right doctor they will want your medical records so you should have all your info when you get there. Make sure to have copies of all your tests – spinal taps, emg/ncv etc. Since its been awhile they will probably want to do bloodwork and maybe new ncv/emg’s. Make sure you point out that you havent had treatment for years now and you need to begin treatment ASAP. Any qualified professional will not waste your time.
If you have problems getting referrals etc from your PCP then get a new one. These guys work for you.
I went through that whole “they are the experts” phase and woke up quickly when they almost killed me. I know its rough. No rest for the weary.
Build a qualified team and get the treatment you need. You have to be your own advocate. Stop dealing with unqualified hacks with medical degrees. These guys will kill you. Seriously, they will kill you with their inaction, erroneous treatments, erroneous diagnosis etc.
I can find some docs in your area if you need help. Good luck.
AnonymousMay 30, 2009 at 11:29 pm
I don’t know if we are on the same path, it kind of sounds like it. My “progression” has been slow. Some days I am fairly functional for a period of time, and some days I am in bed. Today I weedeated, cleaned up outside, rode the riding lawnmower, and used a shovel to dig around the foundation of the house (we have a leak). I know I will pay a hefty price tomorrow, very hefty.
Year by year I lose a little each year. Wheelchair? Yes, now, from time to time. But if you saw me digging today, you wonder why I would need a powerchair to shop with some days. And that is the key, some days.
As far as your condition and your neuro (s). I went to a good neuro for several years. During the time when I got approved for disability and the time I got medicare, I could not afford the trip or the cost for the good neuro. I thought I could get by with a local neuro. Heck, I knew enough about CIDP to keep him straight, and it was mostly pain meds anyway.
After a period of time, and after I got insurance, I wanted to get a little more aggressive with treatment. I totally identify with the “shuffle” you got. All of a sudden, it was “I am not sure, Maybe we should be safe and try this.” Or “i don’t feel comfortable with that line of treatment, how about we test you for this?” and finally, “I am not comfortable with your pain med’s, you need to seek a Pain Management clinic.”
I completely understand where you are.
If you want a more active treatment regimen you need to get to a neuro who knows CIDP inside out. The better informed your neuro is about CIDP, the better your chance for treatment. That being said, I want to pass this along as well.
Sometimes the treatment is as bad as the disease. In my case IVIG didn’t make a big difference. My next treatment options are possibly chemotherapy of some sort. I have to balance my current functionality with the possible side effects of treatment, and possible outcomes. I don’t ,like it, but I am dealing with it.
These are all questions and possibilities you will have to deal with. I cannot give you an answer, but we can discuss it. But it is very true, the more knowledgeable the neuro, the better the treatment.
PM me if youwant to talk privately, otherwise we can work through here.
AnonymousJune 2, 2009 at 10:40 am
I definitely think you need some treatment…after this long of a time, maybe the IVIG will kick everything square in the pants.
Or wherever it needs to be kicked. 😉
I agree with everyone that you need to find a decent Dr. I know from my own experience that it’s much easier to SAY that than actually DO it. Keep looking tho and dont give up. Once you find a dr that is a bit more sympathetic and knowlegable, things would have to get better.
I, too, was noted as a drug seeker..and to be honest, there were times I actually was. I started to heal the pain in my heart and lost sense of what and when to take my pain meds.
I now go to a pain mgmt Dr that is Heaven sent. I so wish you could go to him. He is excellent, super smart, and he truly cares. I dont take narcs anymore…but without him, I’d never gotten off of them. I’m doing fine with my pain…the pain in my heart…well, that takes time…I’m just learning how to better cope. Losing my Mom was my toughest battle so far…but, I’m learning to deal with things.
There is no worse feeling tho than being labeled a drug seeker and that label sticks with you with all of your records when they are sent from one dr to the next. Just talk to them about your meds and be up front and let them know you arent a seeker and that your pain is real. IF they know about CIDP, they wont question it.
Will you be in a wheelchair ? That my friend, we dont know. I worry about that all the time myself. I have a very slow progressive type…I see where I’ve gotten to in just under three years…I can only imagine what lies ahead. I dont think the Dr’s even really know that answer. I know you are a fighter tho…keep on with that attitude and strength…never ever give up.
good luck at your benefit…
AnonymousJune 2, 2009 at 5:46 pm
I’m an old man now, but I can relate to what your going through. I think I had to educate every neuro I went to about cidp. Now, I have no use of lower extremities. I go from a power wheelchair to hospital bed. I have a morning CNA bathe, get me dresses and potty. Another to babysit when my wife goes out for awhile and another to put me to bed. I reflect on what I could have done, but tried about everything that was available. I had days when I thought I was winning and the next it would get worse. I finally found a new nureo who knew about cidp and has patient or two with it. He tried new drugs, but to no avail. He contacted a health care agency which funishes nurses and aids. A big help for me was a lawyer specislizing in elder law.
My days are limited, but my solace is in reading and using the computer. I know you are much younger with family, so hopefully my fate can be forestalled for years for you or never get as far as me. I have pains in all sorts of places. My new dr. told me he felt my arms will not become like my legs.
I had to have a pubic catheter inserted which I flush every morning.
I am lucky to have a loving family. Everyone has a different reaction to this aliment. I do a lot of internet research for cidp as well as a nurse practioner
keeps me abreast of any new clinical studies that look helpful.
I have found the most helpful is pain management. Find someone who keeps up with the state of the art. I’m hopeful some study will have a breakthrough for all the anti immune diseases. Good fortune to you. pwbooks
June 5, 2009 at 1:39 pm
Sorry to here about your difficulties,but don’t give up. Have you tried to see someone at Duke? If you are on SSDI and have a CIDP dx, no way should any doctor suggest you are drug shopping. That simply shows their complete lake of knowledge about the disease.
On the positive side, I bought an electric wheel chair a year ago, November as I was excpected to be in it within a few months. But with changes in treatment, it is sitting. I have regained strength, mobility, endurance and a reasonably normal life. I stopped work 3 1/2 years ago and was approved for SSDI which is how bad I got, but it has turned around due to a neuro that was willing to throw everything know at it. After years of imuran, rutixan, various MS drugs, oral prednisone, IV solumedro, PE and IVIG, we settled on plasma exchanges with IV solumedrol which really slowed the progression, but did not stop it.
Then, when the FDA approved Gamunex last year(a brand of IVIG processed with glycene rather than sucrose) we opted to try IVIG again using this specific brand and wow, what a change. I am still doing PE every three weeks, then 100 grams of Gamunex the day after PE. This combination, for me, has not only stopped the progression, but I have regained so much lost over the years. Can now drive for several hours at a time, do yard work, shop, work on antique cars, walk up stairs, etc. All things that were not possible six months ago. But, this is how I have responded, and as you state, we all react differently to the various treatments. The key is never give up.
If you can’t find a doctor close to you that will offer treatment, Atlanta is a day trip for you, but the MS Center of Atlanta has some great neuro’s and I have been with Dr. William Stuart for over 12 years. As previously stated, he never once refused to try a treatment that might help.
I have a good friend ( has ALS) that sees Dr. Jonathan Glass at Emory. He specializes in neuro muscular diseases and was recommeded by two of the presenting neuro’s at the International GBS/CIDP Symposium in Chicago last fall. It takes a while to get an appointment with him, but Emory dose have its own in house PE unit.
Good luck and keep after it.
June 11, 2009 at 8:11 pm
It is my understanding that the glycine/amino acid enables the product to interact better in the imune system when interfacing with F receptors on the cells, which may have a roll in containing antiviral antibodies.
That being said, I am not sure exactly what it means. A neuro that I saw while in Chicago at the GBS/CIDP symposium for a second opinion about the treatment program I had been on, suggested that I try Gamunex as he had been following their studies and said they were having better results when compared to other IVIG products and the improvements experienced by clinical patients lasted for longer periods. He was very adament that for the FDA to approve Gamunex for the treatment of CIDP it had to be different that other IVIG products.
Knowing that we all respond differently to the various treatments, it is important to have a physician that understands the disease and who is willing to try something different. Hope this helps. Good luck.
AnonymousJune 12, 2009 at 5:35 pm
I dont know if you guys read my posts or not but i am glad i read yours. I go to a neuro in charlotte who wont do IVIG. Diagnosed with GBS now has become CIDP. No treatment has been done. First neuro that saw me for GBS took a long time to diagnose me due to mental histooy(bipolar thought i was psychotic and faking GBS–long story) now having problem with(different) neuro not wanting to treat me for CIDP. Numbness and fatigue getting worse. My mom answer is the YMCA. All my problems stem from lack of excercise in her mind. All it does is make me more fatigued. I go to Pt 2 to 3 times a week and the Y twice a week. Not this week (i also work 10 hours a week.) No Pt for a week due to schedule problem next week so i am sure it is the Y.Not getting any treatment for CIDP . still taking same meds as before DX. Dont know what to think or do. THis is not good for my mental health to say the least. I am reall y tired all the time. THink it is over working and depression.
June 16, 2009 at 2:22 pm
Yes, Gamunex is almost the same cosistancy as Kayro. Because of this, they infuse me at a 250 mg/hr rate and I have no problems. If they run it faster, I get headaches and swelling at the infusion side, then usually get a pretty bad rash a day or two after the infusion. Have not had those side effects at the 250 rate. I have another one scheduled for Friday.
AnonymousJune 17, 2009 at 5:17 pm
I live in charlotte and went to my neuro he doesnt do ivig so he referred me to his partner. After reading my file he had his nurse call and say i was not a good canidate for treatment mean while my numbness is progressing. I first cant believe he diagnosed me over the phone let alone let his nurse tell me. I want to go see another neuro and get IVIG. I have never hd it. But from what i read it is important. I would like a full explanation of why i am not a good canidate. I hope it is not because i am on medicare.They took so long in diagnosing me the last time i have permanent damage to my feet i dont want the same thing to happen to my hands.(was GBS now CIDP)
AnonymousJune 19, 2009 at 9:32 pm
Doctors also looked at me as a drug seeker, they would ask why I couldnt walk and I would tell them I didnt know they looked at me like I was crazy. I went from normal to wheelchair in a 6 week period because I was falling even with the use of a walker. It took me 15 months to get a diagnosis because I did not have any insurance. I received my ssd within 6 months of first filing but wasnt allowed to receive my medicare for 2 years. I have never had any treatments for my CIDP nor any PT so my body is doing what healing it can on its own. Now I have cancer and dealing with that and upcoming major surgery in the next few weeks. I just hope I dont have a setback due to that.
AnonymousJuly 2, 2009 at 12:20 pm
Have you tried chemo?
Sometimes if you aren’t responding to the IVIG or plasma exchange then you can be placed on chemo and plasma or IVIG and its supposed to work wonders.
Don’t give up hope!!
I’m still waiting for diagnosis (which should be just around the corner) but progressing.. I’m a lot younger than you..
If I gave up hope then I would just drop out of college, and plop into a wheelchair now.
But I refuse.
Look into the chemo route if you haven’t tried it already, it may be the option you’ve been looking for.
And forget what the doctors think.
Because of my age they thought I was a hypochondriac, until they saw my EMG was abnormal.
You know yourself better than anyone else.
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