A few questions? New and scared
December 23, 2013 at 2:22 am
I am new to all this and after some googling I am very scared. I fear that my life will never be the same again. And I am only 37 and love the outdoors.
I hear IVIg will take 5 days every month, is that true? If so, how do you manage it with work? Is there any hope of ever going into long term remission so one can be off treatment?
And when none of the treatment works, what will happen? Just continue declining with nothing you can do? I read somewhere that eventually all treatments will stop working and most CIDP patients will end up in wheelchairs. Is that true? I really hope it is better than that!
This is so scary …
December 23, 2013 at 3:49 am
First thing is a good diagnosis so the doctors can confirm what you have. Once the diagnosis is complete, a treatment program can be put in place. Everyone responds differently to treatments and residual symptoms can last a very long time for some.
Have you had nerve conduction and velocity tests? Did they test for elevated protein levels in your spinal fluid? Have you had any treatments with IVIg or Plasmapheresis? Are you taking any Immunosuppressant medications such as Prednisone?
If you recently came down with symptoms, it may be GBS. GBS usually peaks in the first 2-4 weeks, and then gradually fades away over several months, or longer. Body functions return slowly over this time, but may not return to pre-GBS levels in some cases. GBS is not likely to reoccur after its initial attack (RGBS is extremely rare).
CIDP may be suspected when GBS does not seem to fade away quickly enough. There are other diseases that contribute to peripheral neuropathy and your doctor must rule these out to confirm a diagnosis of CIDP. Immune-Mediated Small Fiber Neuropathy is a treatable condition that can mimic GBS or CIDP. Lewis-Sumner and MFS are other variants and symptoms can be very similar to CIDP.
CIDP damages the Myelin sheath surrounding the nerve fibers. Myelin is like the insulation on electrical wire and without it; the nerve signals short out and don’t reach their destination. Myelin can grow back at the rate of 1 millimeter a day, which is only 0.0032808 ft, this is extremely slow but there has been little that can be done to speed up the process. Unlike GBS, recovery from CIDP can be very slow and many of us never get back to where we were physically before being stricken with CIDP.
There is a newer alternative to the traditional IVIg transfusion – Subcutaneously administered IVIg does not require an IV or a port and some patients can give it to themselves, lowering costs substantially. Use of this method would have less impact on your work schedule, maybe no impact if you can administer it yourself. Learn more about it here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783
My CIDP has been in remission since 2009. Others on this forum have reported great progress on beating the disease and some feel cured. According to a recent survey only 5% of CIDP patients end up wheelchair bound. Put down those fiction books about CIDP horror stories and read the survey results here: http://www.gbs-cidp.org/topic/patients-survey-results-into-gbscidp
It is normal for each of us to feel scared while not knowing exactly where the disease is taking us. I hope your anxiety lessens as you learn more about GBS/CIDP and the possible outcomes. I especially hope you get well quickly.
December 23, 2013 at 4:20 am
CIDP can be life-changing, but is not life-ending. My case was severe and it forced me into early retirement (I was 63), but I have recovered to about 95% in three years and my residuals are minor. I seem to be in remission, although I still take medication. I do not use IvIg.
IvIg is usually administered in an initial loading dose every day for five days. After that, maintenance doses vary depending on the patient’s response. I had two five-day doses, but never went to maintenance doses because it seemed ineffective. My primary treatment was plasma exchange, followed by oral drugs.
For those who do not respond to IvIg or plasma exchange, a new treatment may become available. This is a stem cell procedure and it is in clinical trials. Some who have participated have written here about it and said that it worked for them. I don’t know when it will be available as a standard treatment.
At this stage, it is better to focus on beating it rather than worrying about the worst-case possibilities. Get a good neurologist who is familiar with CIDP and in whom who have confidence and take the treatments offered. Work hard at rehabilitation if it comes to that. Do your best to get through it with a mind to going back to work. Don’t give up!
December 23, 2013 at 6:34 am
Of course you won’t understand it, but try, and take notes as you learn.
Extreme exercise relieves all my symptoms when the course of IvIg relapses during my loading/adjustment phase. And I mean REALLY extreme exercise! I was the Iron Man type until nerve problems (CIDP) gave me a foot drop five years ago.
Be patient. The therapies work.
Start a journal. You’ll need it.
And you’ll need full insurance coverage for IvIg as the cost is astronomical!!! SO far, $185000! with $130000 to go the full loading course, adjustments and maintenance… this is for one year. However, my insurance co-pay, at the end of the therapy, will be about $800.
Good luck. Email me if you want my pov.
December 23, 2013 at 3:29 pm
Thank you so much for your information.
I feel like I am in a nightmare that will never wake up.
Jim-LA, If you are in long term remission, how did you get into that remission? I understand you can never get into remission on IVIG or PE.
Has anyone tried high dose dexamethasone? Or even high dose cyclophosphamide? Do they possibly work?
What is your opinion of the stem cell transplant? Will it be available sometime in the future? I am just afraid it will be too late for me.
Thank you for your opinion.
December 23, 2013 at 4:01 pm
My symptoms started shortly after a flu shot. At first only numbness and tingling of hands, feet, arms and legs. Then skin burning sensation and muscle twitches everywhere. Then muscle pain and soreness, feeling fatigues. Then muscle weakness, especially in arms and thighs so far. But calves and everywhere too. Just feeling sore and tired after even the most basic daily activities. The progression has sped up lately. Right now my hands are permanently numb and burning, and muscles constantly ache and twitch, and my arms and legs are wobbly and shaky 24/7.
NCS and EMG and Spinal tab were done a bit too early (I hadn’t had muscle weakness then) and they were all “inconclusive”. My neurologist is not familiar with CIDP, (he is more an MS guy) and he thinks it’s possibly CIDP but he wants to do repeat tests in 4 months to be sure. In the meantime, he will only give me pain medicine, nothing else. I am not sure waiting 4 months is a good idea!
December 23, 2013 at 4:36 pm
Waiting four months is definitely not a good idea if it is CIDP or GBS. You need you strength monitored frequently, and as soon as a diagnosis of CIDP of GBS can be made, you need to schedule an IvIg treatment. With these disorders, early treatment generally leads to a better recovery.
You should also start shopping around for another neurologist who is more familiar with these disorders. But you should also understand that a doctor can’t just prescribe IvIg speculatively. This is an expensive treatment using a limited resource, so the diagnosis must support its use. You need a neurologist who can make progress on the diagnosis more quickly.
December 23, 2013 at 4:36 pm
BTW, my ANA is negative. Does it mean anything? Among ANA, NCS, EMG and spinal tab, which one is the most definitive? Also the fact my symptoms started a few weeks after a flu shot mean anything? Does flu shot cause any other type of neuropathy other than CIDP?
GH, thank you so much for your words. I have just made another appointment with another doctor who was recommended by Jim-La in another thread. But the earliest I can get in is end of January! I am in such a limbo state, which is so scary.
December 23, 2013 at 4:48 pm
Gsim, where are you getting your information on remission? You need to understand that there is a great deal of variability in the course of CIDP, if that is indeed what you have. Another person’s experience is only an example of a pissible outcome, not a predictor of yours. I seem to be in remission, but that does not mean that my treatment would produce the same result for everyone. My result is due to the particular details of my body and the disorder which developed, which are unknown, as much as to the treatment.
I know this message is not satisfying, because people naturally want answers. But because you cannot know the answer to how things will turn out, it is better to focus on a different question: where can you get the best diagnosis and treatment for your condition?
December 23, 2013 at 6:50 pm
GH, you are right.
My symptoms sound like CIDP, and since my symptoms started mere weeks after the flu shot and flu shots seem to be linked to GBS/CIDP, I strongly suspect it. But my neurologist thinks the test results are not conclusive yet so no treatment. So frustrating.
December 23, 2013 at 8:06 pm
The influenza vaccine has not been linked to GBS/CIDP, with the exception of one type of flu vaccine in one season several years ago. In that case, the correlation did not appear in all batches for that vaccine. It is an anomaly which has never been explained.
There is no difference in the incidence of GBS and CIDP between those who have been vaccinated for influenza recently and those who have not. That does not mean that it is impossible that the vaccine could be the cause, but it means that the effect, if it exists, is very small. GBS and CIDP tend to develop during flu season, and since many people are vaccinated each year at the start of flu season, some of those who develop GBS or CIDP will have had a recent vaccination, even if there is no causative relation at all. Coincidence is not proof of causation.
In my own case, when I developed CIDP, I had never been vaccinated for influenza and had had no vaccinations for several years prior to becoming ill. Since recovering from CIDP I have been vaccinated twice for influenza without any adverse effects.
December 23, 2013 at 9:30 pm
Is it possible that in very early CIDP (one month into symptoms), a person’s EMG, NCS and Spinal tab are still all normal?
My doctor seems to think since mine are all inconclusive (borderline), he needs to wait for a repeat in 4 months to be sure. And he tells me even if I find a new neurologist they will do the same. I just feel waiting 4 months while my symptoms are progressing is unacceptable.
December 24, 2013 at 12:01 am
REHAB REHAB & MORE REHAB. I was diagnosed 1/31/13 but strongly think early symptoms started around 8/15/12. Spinal tap confirmed my diagnosis at Swedish cherry Hill in Seattle. Initial 5 day loading doses of IV Metaltrexate (sp.) seem to halt the progression. Admitted to Swedish Rehab but nicked my right calf & developed an Infection. All kinds of different antibiotics were IV’ed into me. Rehab really helped & I was scheduled to go home Mid-March when they gave me an antibiotic called Dapsome, plus they started weaning me off of oral predisone (100mg/Day dropping off by 20 mg’s/day each week). A week after that I started relapsing again & after reading the Dapsome warnings regarding ” . . . may affect nerves, . . . “, that one is now PERMANENTLY OFF OF MY LIST. Readmitted to the medical side of Swedish with 4 days of IV Metaltrexate then 5 days of IVIg. Rehab’ed again, worked back to where I was around the first of March & scheduled to go home in Mid-April. The Doc’s at Swedish developed a drug maintenance plan that I would start taking an old proven Cancer Immune suppression pill call Immuran/Azothriprine working up to 200mg/day plus once a month IVIg, infused over a two day period.
Seemed to work but relapsed again around the first of May. back to the Hospital (local Port Angeles), Metaltrexate 4 days, IVIG 4 days, and then to a local nursing/rehab place. REHAB REHAB Rehab, but one thing I noted was this time the speed of recovery was twice as FAST. also, I noted that the IVIg seemed to help a lot more. Out in a month to home but signed up for Out Patient Rehab (HIGHLY RECOMMEND IT) and in a couple of weeks, working with a Quad Cane. By mid-July around the house I was “Freestyle Walking”, i.e., NO CANES.
The local Physican’s Assistant who I see noted an elevated Blood Pressure reading & talked me into a Satin called Lisinapril (sp.) 10 mg/day. Didn’t budged it a bit and told me to up it to 20mg/day which I did. Plus at the time (Aug/Sept) I had weaned totally off of Predisone. First week of Nov started feeling weaker & couldn’t walk as much. In 3 days had to go back to my wheeled walker. Also noted my BP was spiking and I had trouble sleeping (see my thread re early warning signs). Into the ER & got hooked up to the Liquid Roids for 3 days, back onto the 100mg/day Predisone, and the following week my normal 2 day IVIg.
Well what a relief, parked the wheeled walker, Heavy Quad Cane for a Day, the 3rd day, Sunday Go To Meeting Light single point cane Annnnnnnnnnnnnnnnnnnnnnnd Freestyle Walking. Within 3 weeks of that; into and out of the 6 steps into my motorhome, driving the Explorer (Seattle & Back), don’t use any canes/aids in the house.
Bottom Line/Lessons Learned:
1. Minimize Risks, read and avoid any drugs that have warnings regarding NERVES, Autoimmune Conditions, or (in my case only) Azothriprine.
2. REHAB & treat it like a fulltime JOB.
3. The idea of AIDS, i.e., Slide Boards, Wheel Chairs, Push Walkers, Wheeled Walkers, Canes, Etc., is a TEMPOARARY ONLY AID necessary to transition to the NEXT aid. Try NOT to become DEPENDENT on any one AID. The Idea here is to become Independent thru REHAB.
4. Do NOT GIVE UP!!! Keep Pushing
December 24, 2013 at 12:24 am
Gsim, is possible that early tests will be inconclusive, and tests can have variable results anyway. But waiting four months is not acceptable. If you are losing strength noticeably in a week, for example, then you need a neurologist looking at it every week and trying to get to the diagnosis as soon as possible. Are you experiencing persistant declining strength? At what rate?
December 24, 2013 at 3:21 am
GH, how long does it take to get from onset to the point of not walking? I worry I will be in a wheelchair by the end of the 4 months and by then it will be too much damage.
I am losing strength noticeably. I can still walk but tire easily. Everyday activities make me feel like i just ran a marathon.
My neurologist suspects CIDP mainly because of my post-vaccine onset and my symptoms all fit. Numbness, tingling, prickling and burning skin, muscle twitch and ache, weakness and shakes in both prox and distal, fatigue. All typical CIDP. None of my tests is conclusive.
Jim-LA, stevemckean, JohnQ and harryswope, thank you for sharing your experiences. They are very helpful to me. It is especially good to know follow-up IVIG doesn’t require 5 days, only 1 or 2.
December 24, 2013 at 2:30 am
Hi glsm I have had this wonderful thing call cidp or as I refer to it my “ball and chain” for about a year. It took 6 months for my case to degrade enough for treatment of PE there after my time between treatments was 6 weeks rather costly for only a few weeks respite. I have been on Prednisone 60 mg for 2 months now with 2 more to go before I get weaned off it, hoping for a remission type of thing but for now I am able to function around the house at least, work is out of the question for me too much physical labor gives me waves of tingling down my body as a warning sign. Of course everybody experiences CIDP differently I am lucky mine is mild I do agree a second opinion should be investigated my first neurologist was too inexperienced with CIDP he referred to University of Michigan Neurological Dept. and me new doc was more open about various treatments. I feel one or another treatment will be my magic pill just gotta go thru the normal progression. I wish you luck try not to get bummed out, the people on this site have helped me compare my symptoms to others and that helps knowing others have been thru this experience too.
December 24, 2013 at 3:59 am
Getting GBS/CIDP as a result of a flu shot is very a controversial issue. Neither side of the argument has proven their case conclusively. I’m a believer that a flu shot CAN trigger GBS/CIDP in some of us because none of us are alike and neither are our immune systems. I will never get another flu shot in my lifetime … I would rather come down with the flu than risk another outbreak of GBS/CIDP!
I’m not sure the word remission is always appropriate for CIDP; it conjures a sense that one has conquered the disease. Maybe dormant is more descriptive. Once our auto-immune system has learned how to make the bad antibodies that contribute to GBS/CIDP, it can reproduce them again if triggered to do so.
Lymphocytes (a type of white blood cell) occur in two forms: B cells, which produce antibodies, and T cells, which recognize foreign substances and process them for removal. Things go wrong when a foreign substance is introduced that resembles “self” and changes the immune system’s ability to discriminate between “self” and “non-self.” Flu shots introduce foreign substances in order to trigger the immune system to produce Lymphocites and other cells.
Stem Cell transplant
The stem cell transplant procedure (presently in several clinical trials in the US) targets the immune system by shutting it down with chemo-therapy type treatments. This also kills off the Lymphocytes that protect us against disease. Once the chemo has done its work and the bone marrow is no longer producing Lymphocytes (amongst other cells), our remaining blood cells are harvested, stem cells are captured from these and reintroduced (transplanted) into our bone marrow. This essentially re-boots the immune system and it must relearn how to protect us. The hope with this approach, and what the clinical trials are trying to prove, is that the re-booted immune system will NOT remember how to make GBS/CIDP.
I looked into the procedures earlier this year for myself. I dialoged with a few people who have undergone it and talked with the Admins in three separate clinical trials. I don’t qualify for Dr Burt’s program in Chicago due to age, but I would qualify for Dr Georges’ program in Seattle. One of the things I learned was that my out of pocket cost with Medicare would be around $600K, this is because Medicare does not cover clinical trials (at least thru 2013). The affordable care act is changing Medicare’s coverage for clinical trials in 2014. I have forwarded the link to the new Medicare provisions to Dr Georges’ office so their finance department can look into the costs for me for next year.
The costs to travel from California to Seattle, with my caregiver in tow, rent an apartment, and pay for all expenses, for a period of about 3 months, is not a trivial matter. Not to mention all the fun things like being sick all the time and losing my hair (due to the chemo). Then I would be the “boy in the bubble” for a year or more while my immune system is relearning how to protect me against all the every day bugs we take for granted our immune system will kill for us. And … there is “no guarantee” that it will even work for more than a year or two.
For those that want to learn more about stem cell transplant, here are the two trials I applied for:
I circumvented all the doctor red tape (2-3 weeks worth) when I got GBS because I wanted treatment NOW: I checked myself in to the ER and was on IVIg in two days.
December 24, 2013 at 4:04 am
GBS took 7 days to render me unable to drive, in three more days I was not able to walk anymore. The night before I checked myself into the ER I fell and broke my toe. The only good thing for me was that I was unable to feel any pain from the broken toe due to the numbness from GBS.
December 24, 2013 at 4:06 am
Jim-LA, thank you for the information. Dr Burt’s Stem Cell program makes a lot of sense to me. I hope it becomes a standard treatment one day. If it passes phase 2, how long will it take to get FDA approval?
December 24, 2013 at 4:36 am
The SCT program is controversial within the GBS/CIDP and neurology communities. I attended the GBS/CIDP conference in Los Angeles two months ago. The speaker was Dr Richard Lewis. Dr Lewis is a member of the GBS-CIDP Medical Advisory Board and a renowned researcher. He identified the “Lewis-Sumner” variant of GBS.
I asked him what his take was on SCT. He is following the results but was skeptical of it being a lasting cure. The ‘bang for the big bucks’ (my words) may be overrated. There is a need to follow patients over a longer period of time (many years) to better understand the consequences.
How long it may take the FDA to approve a complicated and controversial procedure such as SCT is anybody’s guess … and, to get our insurance companies to pay for it – well, that’s another story.
December 24, 2013 at 4:52 am
Gsim, the rapidity of progression of weakness is one thing for which there is a great deal of variation. For GBS, onset to maximum is no more than eight weeks, and is typically about four weeks, but can be only a day or two. CIDP often follows a slowly progressing course over months to years. Mine was atypical and was originally diagnosed as GBS. I went from onset to inability to stand in one month. I started using a wheelchair just before my first office visit with a neurologist. He put me in the hospital the same day.
If you can notice loss of strength from day to day, or even over the course of a few days, you cannot wait four months to see a neurologist again. If you have not already taken a medical leave of absence from work for this, you should do so soon, so you can concentrate on getting proper medical attention for this. If you are losing strength, you will forced to leave work soon anyway. Note that earlier treatment generally leads to better recovery.
December 24, 2013 at 11:55 am
GH, thank you for the reminder. Just when my career is going well, I have to lose it. What a terrible disease!
Mine is not GBS, but CIDP. Now I am trapped in this situation, having to wait till my tests get worse before my neurologist calls it, all the while knowing early treatment is the best. What if my tests continue to show “inconclusive” for a long time? Will I receive treatment too late? This stresses me out more than anything.
December 24, 2013 at 6:24 pm
Gsim, you should be considering other neurologists, in my opinion. Don’t wait four months!
CIDP does not necessarily end careers. I could go back to work in my career except that I was near full retirement age when I got sick, so didn’t want or need to.
It is impossible to know what is “too late.” I was paralyzed from the shoulders down before I started plasma exchange treatments. That was three years ago. Today I walk without assistive devices and with only minor residuals. Work for the best outcome you can possibly achieve.
December 24, 2013 at 11:55 pm
GH, I will definitely find another neuro. I am doing research right now to find one in Miami area who is familiar with CIDP.
I am so stressed out lately that I completely forgot today is Christmas Eve. I really appreciated everyone who is taking time to patiently help me. You are my guardian angels. Happy holidays!
December 25, 2013 at 11:02 am
hi gslm when cidp is at its worst I use a cane but normally I get around fine, when I first came down with this I was sure a wheelchair was my future. Once you start treatments and get back some strength i think you will see that with some rehab work you might be surprised how much you can do. I am moving to Orlando this spring and will be looking for a new neurologist too, good luck looking in Miami for one.
AnonymousDecember 25, 2013 at 4:49 pm
I am also new. I was diagnosed after having an EMG nerve conduction test. That was in the middle of NOV. of this year. The pain started a year ago today and I had no idea what it was. I also have a cervical spinal cord injury to the neck from a neck surgery that went bad. It was just one herniated disc that was taken out. So I”m already on disability and have so many questions just about how that works and the expenses. I only get medicaid to help with my part d drug prescriptions.
So I started off with extreme pain in my buttocks, hips, and thighs. Then it ended up spreading into my pelvic region. So they thought I had bursitis and I went and had shots for that. Then a MRI, CAT scan, acupuncture, went to a physiatrist that for some reason gave me shots on both sides down into the discs of epidural steroid shots that didn’t do anything because I didn’t have anything wrong in my lower lumbar, on to a neurosurgeon that just sent me back to my neurologist because there was nothing wrong.
Finally my neurologist had me do the nerve conduction test both the shocking and the needle and that doctor who did that immediately said I needed a spinal tap and said I had this CIDP. So I waited and my neurologist called and said I had CIDP and what hospital would I like to have the spinal tap and the IVIG fusion done because he is 2 1/2 hours away and I could do this locally.
I’m having a lot of gladder control issues as well as weakness in my arms. I still haven’t had my spinal tap and I’m getting pretty worried that if this is CIDP and it’s gone untreated this long, how much damage am I having. I certainly don’t want to be wearing diapers the rest of my life so I”m getting a bit scared that nothing is happening.
Things I know for sure is I have severe peripheral neuropathy, extreme weakness, and extreme pain. I will leave out what pain meds I’m on but they are extremely strong pain medication and it really doesn’t seem to help much. I’m on a medicare supplement and I have no idea what they will cover and I don’t know how to get my neurologist moving on this now. Any advice?
AnonymousDecember 25, 2013 at 9:04 pm
Merry Christmas, all!
Last year I was hospitalized after contracting Guillain-Barre Syndrome and I was in a wheelchair. I’d had a flu shot about a month beforehand, and didn’t feel terribly well after having it. I do <span style=”text-decoration:underline;”>not</span> have CIDP. I was given IVIG twice while hospitalized, the second time after I began re-experiencing problems with my hands and arms. I was hospitalized from mid-November 2012-January, 2013, and released into out-patient physical and occupational therapy, sans wheelchair, which lasted until I returned to work in March 2013. I am able to work a five-day week, but do become tired after the fifth day and am glad to rest up during the weekend. I was happy to return to work as I am too young to retire (I was 59 when I developed GBS, and am 60 now) and I wanted to really try to avoid pursuing disability if at all possible. There was also the matter of having group health insurance as provided by my employer and getting those bills paid off. We have a high-deductible policy which I suspect is the norm for most workers in the U.S. GBS medical costs, in my case, were expensive but the hospitals were more than willing to set up payment plans (I cannot speak for CIDP medical costs). I should be free of the bills by fall 2014.
Whether one has GBS or CIDP, I think that doing physical stuff (free weights, walking) is absolutely essential. I was discharged with a ton of material from the physical-occupational therapy time. It’s a bit challenging to pursue as I live in the upper midwest and we just began winter but I am really trying to keep up with this. I fell and sprained my ankle a couple of weeks ago on the ice on my own property, but it’s healing nicely and I will begin again. I am not quite able yet to abandon the use of a cane while out of my home, especially in the winter, but that is okay. I don’t use it in the office or in our office building. Fortunately my office is connected by an underground walkway, transportation to office.
For the emotional recovery from GBS (in my case), I am seeing a psychotherapist with whom I had a professional relationship before I became ill. This is also essential in the process of recovering from a serious illness. Anything that works (religion of your choice, meditation, Reiki – though I have not tried that) should be pursued.
I have not since hospitalization had IVIG nor was it recommended that I be given it on a maintenance-type basis (I live in the United States – in other healthcare systems the recommendation might be a different one). I was told that GBS “might” return but not “will” return.
Please keep us posted!
December 30, 2013 at 12:08 am
Thank you everyone for your support.
I don’t know what will happen but I am just hoping there will be some normal life left for me.
December 30, 2013 at 2:48 pm
JudithKay1, thank you.
I desperately try to hold on to the thought that life might still be semi-normal. But after reading this forum, I know better. From the posts here (I have done nothing else this past holiday week) I see the deep hardship and struggling faced by the vast majority. Those who do well are far and in between.
Never in a million years would I have dreamed a flu shot would ruin the rest of my life. But here I am. I will try my best to at least stay strong mentally.
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