First of I'd like to ask how many of you went years being unproperly diagnosed and why? As for me I complained for two years manily about severe pain all over my body and then weakness came up. But still even with the weakness (i literally coudn't stand up by myself) but my MRIs and EMG always came up normal which lead doctors to say I was suffering from chronic fatigue severe depresssion all kinds of nonsense... Then i went to the US and was finally diagnosed with CIDP ( i am not sure why others couldn't diagnose it earlier)... Now we are talking treatments. As I have been sick for a long time, we need to treat severely as well. So I am asking those of you who went through plasmapheresis, how was it? what does it exactly do and how long does it take before you notice progress?
Why? Because it is rare. It has only been in the last few (2, 3?) decades that it's even been recognized. Previously it would have misdiagnosed as well, so out of luck as well. Mine was misdiagnosed from 1999 to June 2012.
Unfortunately, I can't speak to the effects of plasmapheresis. I fought my Neuro for months to try to start me on it, but he refused, finally putting me on IVIG. Why? Again, no good answer. I thought for sure plasmapheresis would have been cheaper, but since I'm at a Military Hospital, the plasmapheresis unit sees more use than some Civilian clinics. The IVIG takes up one chair in the infusion clinic every 4 weeks.
my nerve conduction is normal but im severly disabled.( cant leave my room), I live in the US and it took over 5 years for a diagnosis, because it started in my twenties no one believed me. ive never had plasmapharesis
Thank you very much everyone for your answers! SO my question now is: should I ask about IVIG instead of plasmapheresis, do you think it has more chances to work? I have been severely sick for a year now (and less severely for fours years...) so what would be my best bet? I trust my neuro I just want youropinion as you have real experience! Thanks again everyone.
CIDP is reasonably rare so many physicians have had no experience with it. When there is no experience getting to the truth of a diagnosis is going to be problematic, particularly if you have an atypical presentation.
You say "Apparently my nerve conduction is still normal..." so that would probably indicate something other than CIDP to investigators. So - their first choice is going to be to look for something else until they can not get a clear diagnosis from other possibilities. Then they have trouble - something is clearly wrong - but what? Then they have to do the whole testing evaluation again looking for an atypical presentation of "something" - but what is the "something"? This is where it is important that the physician has experience with CIDP and its various presentations.
Eventually someone will put the evidence together and decide that on probability they have enough to suggest you do have atypical CIDP and not some other atypical "something".
I did find an interesting paper from 2005 about definition of CIDP that you might find to be an interesting read and give you some idea why your physicians were put off by the absence of nerve conduction problems. See http://www.pnsociety.com/Guidelines_CIDP.pdf
That paper also gives you an idea of the principal treatment recommendations.
Well as we speak CORD is trying to get parliament to classify 1 in 2000 as a rare disease, to promote research, so think about it, what would 1 in 100,000 be? I live in London and glad to see another Canadian on this web site, for the last few months I thought I was the only one here. As far as how long it took to be diagnosed, it took my doctor's here at U.H. seven years to finally figure it out. I hope this helps you out. Gary
I should have said that it took my doc about 30 seconds to be thinking on the right track because he had previous experience with just one person with CIDP - his first clue was how I was walking!!! He then quickly eliminated a few possibilities and looked for some of the blood markers and referred me straight to the neurologist. That took a while to happen but when it did the diagnosis was confirmed with nerve conduction and other tests as well as other tests to eliminate other possibilities. All very quick - then direct to treatment.
Hi, I was dianosed with Spino cellebar degenaration 41 years ago and a couple of years ago they told me I have CIDP. It all started when I had my son. I started to get very painfull "pins and needles" in the back of my legs and for years I suffered with deep depression. My GP reffered me to a nuero.The mylin sheath is nearly non exsistent according to the nerve conduction test.I have had the IVIG but that didn't help. I'm sorry I don't have a answer for you but I hope that someone here does. Please (and I know it will be hard" don't sink into depression.See your G.P.and ask for help. God bless. Shirl
How were you disgnoased with cerebeallr degenration if you dont mind me asking and what your symptoms are? i have more than one diagnosis. I recently went to duke and they found a spontanteous csf leak in my back and had that fixed. I have no cerebellar function, i even have truncal ataxia. I have to go back to see special neurologist and genetics if i can get in?
shirl3 said:
Hi, I was dianosed with Spino cellebar degenaration 41 years ago and a couple of years ago they told me I have CIDP. It all started when I had my son. I started to get very painfull "pins and needles" in the back of my legs and for years I suffered with deep depression. My GP reffered me to a nuero.The mylin sheath is nearly non exsistent according to the nerve conduction test.I have had the IVIG but that didn't help. I'm sorry I don't have a answer for you but I hope that someone here does. Please (and I know it will be hard" don't sink into depression.See your G.P.and ask for help. God bless. Shirl
To answer your first question: I think there are two reasons it is so hard to diagnose. The first is that it is relatively rare. Many family doctors have never heard of it. My family doctor recognized it as some sort of neurological problem and sent me to a neurologist, who suspected it right away. But after the diagnosis, I had to educate my family doctor. The second reason is that the symptoms vary so much from person to person. Some people have bad pain, some people have no pain. Some people only have leg weakness, some people have weakness everywhere, etc.
As far as the plasmapheresis, I had it one time when I had a relapse while I was out of town. I was hospitalized, basically unable to walk. They won't do the treatment every day, only every other day. So, I had three treatments over a period of five days. At the end of that time, I was improved enough that I could navigate the airport and get home again. But the effects didn't last very long, and in a couple of weeks I was back in for IVIG,which is my neurologist's preferred treatment.
To do the plasmapheresis, they had to surgically implant a port into my jugular vein. Not fun! My neurologist doesn't like it because he says it is more invasive and has more risk of infection, which seems about right to me. And the IVIG does work great for me, almost like a miracle.
By the way, I had the same experience as Mdolich above. I was on 60 mg a day of prednisone, and it didn't help me at all. I know it works great for some people, but not me. That is fairly typical of IVIG - everyone seems to have different results. So, if something doesn't work for you, keep pushing on your doctor to try something else.
Hi Uncle Bill,Painful pins and needles, no sense of balance no reflexs,couldn't feel my feet when walking. I also have ataxia. My balance is getting worse.I don't know which is to blame, SCD or CIDP,but they have had to amputate 1 and a half toes on my left foot and took the bone on another toe on my right. One of my other toes might have to go. It appears that the feet and the fingers get deformed as time goes on.My spine has curved and is getting worse.I could never run when I was younger, I now rely on a wheelie walker or I"surf" the furniture around the house. 41 years ago I had a nerve conductor test and some kind of test that they no longer do.( found out it was too dangerous) It them putting into a light sleep and puttng somthing in your spine while being exrayed. I kept waking up and vomiting. I then and to lay on my back for 24 hours and not move.After a week in hospital doing tests they came up with the first diagnose.Hope this helped. cheers Shirl
How were you disgnoased with cerebeallr degenration if you dont mind me asking and what your symptoms are? i have more than one diagnosis. I recently went to duke and they found a spontanteous csf leak in my back and had that fixed. I have no cerebellar function, i even have truncal ataxia. I have to go back to see special neurologist and genetics if i can get in?
shirl3 said:
Hi, I was dianosed with Spino cellebar degenaration 41 years ago and a couple of years ago they told me I have CIDP. It all started when I had my son. I started to get very painfull "pins and needles" in the back of my legs and for years I suffered with deep depression. My GP reffered me to a nuero.The mylin sheath is nearly non exsistent according to the nerve conduction test.I have had the IVIG but that didn't help. I'm sorry I don't have a answer for you but I hope that someone here does. Please (and I know it will be hard" don't sink into depression.See your G.P.and ask for help. God bless. Shirl
I was lucky because my doc diagnosed me right away after many tests but I had symptoms for about a year before seeking help. I’ve had 3 Plasmapharesis treatments. They are scheduled every other day like the other person said. You can’t have them back to back because of losing proteins and such each treatment. They take about 3 hours. I had them in my arms but many have to have a port because of veins. They helped me but didn’t last long either. I tried them because of severe side effects of IVIG. Most physicians choose IVIG as first line treatment because it is less invasive but it does not work for all. Some patients rely on Plasmapharesis. I found it to be as expensive as IVIG. Hope this helps.
I went over 10 years being misdiagnosed. I had all the tests- they came back “normal”. I have suffered to where I am ready to give up. The pain is so unbearable!! I’m on so much pain medication. Nothing I’ve tried has worked. I can hardley walk. One of my sisters had to move in to care for me. I am becoming bedridden. I’m already housebound. I’m so sick of this horrible disease.
I was lucky to be diagnosed with CIDP after only 1 family doctor visit and 1 referal to private consultant who sent me for EMG,which indicated CIDP, straight into prednisone, Physio and after a short time IVIG, which i have every 4 weeks. i now am needing and look for the IVIG weekend as i am getting very very tired and tingling hands and feet. I have never had plasmapheries and also no reaction to the IVig. My nerve tests indicated immediately to the Doctor that it was likely to be CIDP.With having IVIG for the past 18 months there is no one with the same input of IVIG and agreat range of symtoms. I have yet to come accross anyone having plasma treatment but this may well be that it this procedure is undertaken in adifferent ward.. I hope your procedures are successful
Plasmapherisis was my miracle worker, was treated 19 years ago and have had no reoccurrences of CIPD since. Tried IvIG and prednisone with some success. As for diagnosis, took a year, and not until I went to the US.
My diagnosis took about a year until my GP finally sent me to a neurologist.
The nerve conduction test indicated CIDP, but the lumbar puncture confirmed the diagnosis. He had me try IVIG, which I did, and after 9 infusions there was very little improvement. So I agreed to try plasmapheresis, which I equate to having a dialysis treatment since it removes the plasma from your blood and then replaces it with saline solution.
First, I had the "tunneled catheter" placed (yes, into the juglar vein) and while it is painful to have done and a pain to maintain, it is much easier on the veins. The plasmapheresis treatments were 3 times a week for 2 weeks. I saw a bit of improvement, but the damage had been done to my nerves so I still walk with a cane and have quite a few of the same symptoms that everyone else has.
It has been 2 years since the plasmapheresis and am seeing a very slow decline in my condition.
HI Filmaker, I am so sorry to hear of your struggles. My sons nerve conduction studies and spinal tap were not normal and indicated CIDP soon after severe weakness set in and so we didnt experience a frustrating wait for diagnosis. He responds well to IVIG for 3 days every three weeks but the frustrating thing for him is that his remission from symptoms only lasts 10 days! Does anyone else have this fristration?
Glad you are beginning to get answers filmaker, to this very rare and strange condition,
I have been treated with IVIG since diagnosis and it has worked wonders. If I keep on my IVIG schedule I feel great, no major symptoms of my CIDP. I live a normal live, work full-time and am quite active. I have to keep a little slower pace then I use to do before CIDP or I start to feel tingly and my legs ache at night. I was never offered Plasmapharesis. Did try Pred for the first two weeks after diagnosed... I hated Pred and had horrible side effects. Then went to IVIG and did great. I would push for IVIG as it seems to work wonders if you can tolerate it. Everyone is different. But if they run it in at a slower rate you will have a better chance of not having any problems. Drink lots of water the day before, day of and day after. Helps keep the headache away too. Good luck with whatever treatment you end up having.
Yes, Brenda. I am sick for a week afterwards and then feel good for about 7-10 days. My treatment is four days because of menigial headaches. That is why I went to Northwestern in Chicago to try a Stem Cell transplant Study by Dr. Burt. The results are very promising and they won’t say cure yet. The longest person out of the study is 7-8 years and she is still off of IVIG. I have tried many therapies that haven’t worked, I thought this was my best option.
I have Lewis-Sumner Syndrome (as my doc says a "rare variant of CIDP"). I tried IVIG, felt good, but my disease was progressing, then did IV Prednisone, had an allergic reaction, moved on to Plasma Exchange. I had 5 treatments and I feel better then I have in years (I've been dealing with this for 30 years, just correctly diagnosed at the beginning of this year!). I felt better after the 4th treatment and very good after the last one. I have regained my balance, not as much pain and so much more energy. Since this is my first experience with this, I have no idea how long it will last, I am starting my third week of feeling well. Hope this was some encouragement to you.