New member, CIDP as of January 2009
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October 29, 2009 at 8:27 pm
Just granted authorization to add new posts. I have enjoyed, and found much solace in reading the existing posts by all members.
I have been living with CIDP for approximately 10 months now, but did not get diagnosed until August 2009.
Originally, I began experiencing weakness in my left arm while running, and normal exercises. I would have difficulty keeping my arms up, and noticed a big drop off in strength doing exercises such as pull ups and push ups.
I have always been very physically active, and at the time did not think there was anything medically wrong with me. I had never experienced any type of sports related injury that never healed on its own.
I finally decided to see a doctor one month later when I realized I could not play basketball, and could no longer lift weights at the gym.
Originally, the doctor and physical therapist believed I was experiencing a pinch nerve, and that I needed to rest my body. Surprisingly, my condition began to improve with therapy and avoiding any exercising involving my arms.
Approximately two months later, the condition began to affect both my left and right arms, and slowly my legs. The digression was very gradual, and I still did not think much of this odd condition.
It was not until month number seven that I really began to see signs of CIDP: loss of strength in both arms, weakness in legs
On August 1, I had lost all mobility in my right arm, and within another 10 days, my left as well. I could barely move my fingers, and was unable to bathe, eat, dress myself, along with all normal motor activities that we take for granted.
I did the whole round of seeing an orthopedic, blood tests, mri, x-ray. All of which did not show anything abnormal with my body or health.
I finally was forced to check myself into the emergency room because I could not get an appointment with a neurologist.
After the neurologists initial diagnosis, and conduction of a spinal tap, I was diagnosed with CIDP.
I was immediately given a 4 day treatment of IVIG, along with a daily dosage of 60 mg. of prednisone.
Fortunately, the treatment worked like a miracle for me as I had gained full mobility in my arms within 5 days of the treatment, and felt back to normal within 2-3 weeks. I had gone from a partially crippled patient, to being on my feet again within a few weeks.
My condition continued to improve, and my neurologist was eager to cut me down on the prednisone. After the first week, he had cut me down to 50 mg, after the second week, 40 mg. After the first month, down to 30 mg.
I did not experience any difficulties, and continued to experience an increase in strength until week number 5 when I began to feel symptoms of weakness, and the “burning” sensations. For me, I experience these feelings in my trapezes muscles.
My neuro decided to bump me up to 40 mg., but this time wanted me to try doing double dosages twice a week. So instead of taking 40 mg./ day, to take 140mg twice a week.
Within five days, I had my first official second flare up. I remember the day specifically; fatigue, lethargic, and weakness in my arms. By the end of the day, I had difficulty raising my arms after showering.
I contacted my neuro immediately, and he had me bumped back up to 60 mg. The increase in medication helped to stabilize my condition immediately. I went in for another doctor visit the following Monday, and we decided to hold me at 60 mg for atleast a few weeks before decided on another round of IVIG.
My condition improved slowly; energy levels and strength, but I knew that I was no where close to being myself.
At about day 10 of going back up to 60 mg of prednisone, I had another slight flare up where I felt extremely fatigued, and noticed signs of weakness in my arms. However, this time, I decided to just lay down and rest during the middle of the day, and after an hour of sleep, felt completely charged up. Almost like I was able to sleep off the oncoming symptoms of CIDP.
Since that flare up, I feel like my condition has improved again. My energy levels are almost back up to normal, and the strength, while not being back to normal, is slowly improving.
There are still days where I feel signs of CIDP coming on: a burning uneasy sensation in my left trapezes area, and just a heavy feeling in my shoulder area.
Since my initial diagnosis, I have been seeing my normal neurologist in Hawaii: Dr. Melvin Yee, and have seen a second opinion neurologist in L.A.: Dr. Shoulin. I originally wanted to see a doctor in Stanford or UCLA, but the process is a nightmare and was told to call back in 2010.
I have been very pleased with the treatment I have been receiving. We all agreed that I was tapered off the prednisone at too fast a pace, and this time will do so at a much slower pace.
Dr. Shoulin sees about 1 new CIDP patient a week and says that I have mild symptoms of CIDP, and respond well to the treatment, and for that I am very lucky. He also suggested that I get another round of IVIG to help bring me back to normal, but Dr. Yee wishes to give the prednisone a little more time, and to reserve the IVIG for emergency uses.
I personally feel like I could use another dose of IVIG, just to give me that boost, but am willing to give the medication a little more time. I only have one concern; because the changes with prednisone are so slow, once I try to taper down, I will have another flare up.
I am also planning to visit the Mayo Clinic in Minnesota to get a third opinion for CIDP.
This time around, I am restricting myself to very conservative activities, to help my body recover properly. I do not do any arm exercises, and do a light 1.5 hour walk up and down a hill. I also do 15 minutes of ab exercise. I have also become a vegan: no meat or dairy in hopes of improving my health.
So far so good, I am willing to try anything to beat this disease in to submission.
In a nut shell, this entire experience has been life changing for me. I have become a new person, and am very happy with the simple things in life; friends, family, and good health.
Prior to this, my life had been going at 1,000 mph. I am only 27 and had been living in China for the past 6 years. I worked for the State Department for 3 years out of school, had completed my MBA by the age of 25, and had been doing business for myself ever since.
Despite all the professional challenges, I never felt completely satisfied, or sure of “what it was” that I was trying to accomplish. My only focus was money, career, and success.
After going through these past few months, none of the things I mentioned above matters much to me. I already feel like the richest person in the world with the love and support I have received from my family and friends.
Upon signing up with this organization, I have already received phone calls for support from other members; thank you very much to Phil, Patty, and Chuck.
There is still a million things that I could write about, but I will leave it to the hands of blogosphere to lead the direction of my content.
I would be very interested in hearing about other people’s treatment strategies, and management of CIDP: how often do you receive IVIG? How much prednisone? How long have you been living with the disease? Any remission cases? If so how long did it take, and what steps do you feel brought you to that point?
Thank you and God Bless,
Michael Chan
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October 29, 2009 at 9:31 pm
Michael,
Welcome to the group. I have found everyone to be very helpful and without this site I would be lost!
I have CIDP. I have monthly IVIG of 90grams. I take many pills a day for CIDP,Diabetes, and Coranary heart disease. ( I am 44 years old!)
I can’t walk far as I have lots of pain and swelling of the ankles and legs.
Pain in arms and hands and also my back.
I try to remain positive and make the most of each day.
Again welcome,
Rhonda from Canada
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October 29, 2009 at 10:58 pm
Welcome. I hope you like the support as much as we have. My daughter is 3 with cidp. Her neurologist told us the other day at her appt. that 50% of adults with cidp go into remission. I would take this with a grain of salt but the man has done research on cidp and has written papers and a book on the subject! He also believes in weekly ivig until you come back to baseline and then he believes in going to everyother week and so on. He is not a big fan of prednisone and uses it only if ivig does not do the trick. Best wishes at the Mayo. We thought about doing that, too. Please let us know what you find out.
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October 30, 2009 at 11:18 am
Mayo is a wonderful idea on many fronts. First to get a proper treatment schedule and mostly, to have the Mayo docs work with your docs at home regarding your continued treatment plan. At this time it sounds as if your docs feel that ster. will kick the cidp in the butt and ivig is an emergency tool. On the contrary, ivig is the safest avenue to treat an keep cidp at bay. Steroids ARE neede by some in conjunction w/ivig, as well if ivig is not an option from an insurance standpoint, you must use the steroids.
They do work, but have their own set of long term side affects. Typically, cidp necessitates long term use of ivig to keep things at bay and constant. You usually start out with a load. dose and wean down to a maint. dose. Load is 2g/kg of body weight, maint is 1g ivig/kg of body weight. Everyone is different regarding how frequently they need infusions. My 12y/o for example has been on ivig for 3 years. We started out once every 6 weeks with a load over 4 days. he would get VERY sick, so currently we have settled with every two weeks to split it up and we have seen great results with side affect reactions. Also we were at 125 grams total and now get 70g. Some docs and studies suggest frequency is more important than amount, meaning of Kevies 70g total, it is best to administer 35g every 2 weeks instead of 70g once a month over 2 days. Every person is different and requires different levels of pain treatment, ivig or a combination of ivig and other drugs. It may take a while to figure out what works for you. Probably the best advice I can give you is follow your bodies signals and DO not medicate as needed. You have to stay ahead of the symptoms. If you wait till you fell tired, or your legs are heavy or tingling, you have already let a new demylienation process start. You have to stay ahead of autoantibody production and let good antibodies (ivig) overtake the autoantibodies. With each new process comes new damage that you might not recover from totally (residuals) Good luck and read and educate yourself as much as possible. Not all docs have experience with cidp. You are your best help.
Dawn Kevies mom -
October 30, 2009 at 11:46 am
Michael:
I, like you, was very athletic. I am 47 years old, and have been on full medical disability since 2005 from a myriad of disabilities from CIDP. My case of CIDP has been a slowly developing, chronic progressive one, marked by one very severe, acute exacerbation in 2005.
From what I have learned, rapidly relapsing/remitting cases like your description of your experience, especially in younger people, are often the most responsive to treatment – so that could be great for you.
I do want to echo the warning on chronic corticosteroid use – it really is one of the most damaging drugs relative to long-term side effects gained from long-term use. It can offer great results, but with a price. In its own way, I think its more damaging to the body than chemotherapy.
If IVIG provides you with results, consider pushing for it as your main treatment. IVIG is FDA approved for CIDP.
Best of luck to you,
Bill
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October 30, 2009 at 4:17 pm
Dear Rhonda,
Thank you very much for your reply.
Could I ask what type of pills you take for CIDP?
I am currently taking 60 mg. of prednisone a day. I plan to be on this dosage for another 2 weeks, and then will begin to taper off at a rate of 60/50mg alternating days for a month.
I noticed that you also have other medical problems such as diabetes and heart disease. Are these due to the side effects of your CIDP medication?
My doctor is always very concerned about the side effects of prednisone. That is one of the reasons I decided to become a vegan; to combat the side effects of the prednisone. Also, I have read a lot of recommended information about the benefits of eliminating all meat and dairy from your diet.
Its worth a try.
Nevertheless, very nice to meet you and hope to stay in touch.
Aloha,
Mike
[QUOTE=Rhonda]Michael,
Welcome to the group. I have found everyone to be very helpful and without this site I would be lost!
I have CIDP. I have monthly IVIG of 90grams. I take many pills a day for CIDP,Diabetes, and Coranary heart disease. ( I am 44 years old!)
I can’t walk far as I have lots of pain and swelling of the ankles and legs.
Pain in arms and hands and also my back.
I try to remain positive and make the most of each day.
Again welcome,
Rhonda from Canada[/QUOTE]
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October 30, 2009 at 4:28 pm
[QUOTE=selahsmom]Welcome. I hope you like the support as much as we have. My daughter is 3 with cidp. Her neurologist told us the other day at her appt. that 50% of adults with cidp go into remission. I would take this with a grain of salt but the man has done research on cidp and has written papers and a book on the subject! He also believes in weekly ivig until you come back to baseline and then he believes in going to everyother week and so on. He is not a big fan of prednisone and uses it only if ivig does not do the trick. Best wishes at the Mayo. We thought about doing that, too. Please let us know what you find out.[/QUOTE]
Dear Selahsmom,Thank you for your reply. Could I ask what the name of your neurologist is? I would be interested in reading more about his work with CIDP.
I also feel that IVIG is the way to go. I can’t explain the effect it had on my condition, I literally felt like “someone” was playing a joke on me due to the way I responded to the treatment.
Unfortunately, my doctor is very apprehensive to giving it to me because of the costs, and wanting to develop a long term plan for management.
My heart goes out to your child, I cannot imagine what it must be like for you as a parent.
Did anyone in your family have any problems with auto-immune? Is this something I should be concerned about when ready to start a family?
Aloha,
Mike
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October 30, 2009 at 4:37 pm
[QUOTE=Dawn Kevies mom]Mayo is a wonderful idea on many fronts. First to get a proper treatment schedule and mostly, to have the Mayo docs work with your docs at home regarding your continued treatment plan. At this time it sounds as if your docs feel that ster. will kick the cidp in the butt and ivig is an emergency tool. On the contrary, ivig is the safest avenue to treat an keep cidp at bay. Steroids ARE neede by some in conjunction w/ivig, as well if ivig is not an option from an insurance standpoint, you must use the steroids.
They do work, but have their own set of long term side affects. Typically, cidp necessitates long term use of ivig to keep things at bay and constant. You usually start out with a load. dose and wean down to a maint. dose. Load is 2g/kg of body weight, maint is 1g ivig/kg of body weight. Everyone is different regarding how frequently they need infusions. My 12y/o for example has been on ivig for 3 years. We started out once every 6 weeks with a load over 4 days. he would get VERY sick, so currently we have settled with every two weeks to split it up and we have seen great results with side affect reactions. Also we were at 125 grams total and now get 70g. Some docs and studies suggest frequency is more important than amount, meaning of Kevies 70g total, it is best to administer 35g every 2 weeks instead of 70g once a month over 2 days. Every person is different and requires different levels of pain treatment, ivig or a combination of ivig and other drugs. It may take a while to figure out what works for you. Probably the best advice I can give you is follow your bodies signals and DO not medicate as needed. You have to stay ahead of the symptoms. If you wait till you fell tired, or your legs are heavy or tingling, you have already let a new demylienation process start. You have to stay ahead of autoantibody production and let good antibodies (ivig) overtake the autoantibodies. With each new process comes new damage that you might not recover from totally (residuals) Good luck and read and educate yourself as much as possible. Not all docs have experience with cidp. You are your best help.
Dawn Kevies mom[/QUOTE]
Thank you very much for your insight.I will be going to the Mayo Clinic on November 30 to visit with a Dr. Mauerman.
I agree with you that IVIG is the best form of treatment to keep the “bad” anti-bodies out of the system.
Unfortunately, my doctor is very apprehensive to giving me such frequent doses of IVIG due to its extremely high costs. He would prefer to find a better system of management, and then use IVIG as required.
My legs, up to this point have been least affected by CIDP. For my condition, it is my arms that get affected the most by this disease.
I feel the same way about not letting the disease catching up with your body. I wake up in the morning and can feel the difference in my body, a few hours after taking my medication.
That is why I am very concerned about this form of treatment, and how my body will begin to react once I attempt to taper off the prednisone.
My first treatment of IVIG consisted of 50 oz, for 4 days.
My heart goes out to your family, this disease has completely changed my life, and to be honest am still very scared of what to expect.
Thanks again, and hope to speak again soon.
Aloha,
Mike
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October 30, 2009 at 4:45 pm
[QUOTE=Billt]Michael:
I, like you, was very athletic. I am 47 years old, and have been on full medical disability since 2005 from a myriad of disabilities from CIDP. My case of CIDP has been a slowly developing, chronic progressive one, marked by one very severe, acute exacerbation in 2005.
From what I have learned, rapidly relapsing/remitting cases like your description of your experience, especially in younger people, are often the most responsive to treatment – so that could be great for you.
I do want to echo the warning on chronic corticosteroid use – it really is one of the most damaging drugs relative to long-term side effects gained from long-term use. It can offer great results, but with a price. In its own way, I think its more damaging to the body than chemotherapy.
If IVIG provides you with results, consider pushing for it as your main treatment. IVIG is FDA approved for CIDP.
Best of luck to you,
Bill[/QUOTE]
Hi Billt,thanks for your response.
My doctor has stressed over and over his concerns over the long term side effects of prednisone.
But what other choice do I have? If I had to get IVIG every week, i’d be broke.
I think I have already rationalized with myself that I would rather live another good five, than a bad forty.
Could I please ask what your current form of treatment for CIDP is? I am very interested in hearing what forms of treatment works for other people.
I myself feel like the IVIG showed the best results. It was literally a life saver as my condition was going down hill, and fast.
I still cringe when I think of all the time I had let pass before finally getting the proper treatment.
Thank you once again for your response, and hope to hear again from you soon.
Aloha,
Mike
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October 30, 2009 at 5:22 pm
Michael:
I receive IVIG every other week, 32.5 grams per infusion. Over the years I have also been treated with pulsed IV Solumedrol (IV form of prednisone), the immunosuppresant Cellcept and plasma exchange. For me, next possible steps that have been discussed are Rituximab or cyclophosphamide. I’m more intrigued by cyclophosphamide, as it is a more generalized chemotherapy that strongly suppresses the immune system in general, wheras Rituximab is a targeted B-cell therapy.
One consideration is that IV Solumedrol does have some lessened side effects versus oral prednisone, but it still share some of the nastier ones.
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October 30, 2009 at 8:27 pm
Michael,
It sounds like your CIDP is following the classic pattern. It also sounds like your neuro has a handle on things and as long as you keep the lines of communication open and positive, he should respond to your needs.
Remember what CIDP is. CIDP is an autoimmune response. Your immune system believes that myelin(the covering that surrounds the axon) is bad and needs removal. Since you have a lot of myelin, the immune system ramps up and goes full bore. The IVIG is like an army of “good soldiers” that attack and destroy your “bad soldiers”. Then without the bad guys doing your body harm, you recover.
Prednisone is not as aggressive as IVIG. It might be compared to sending “advisors”. They try to suppress that bad guys and keep them from harming you. Prednisone is also a steroid and helps heal the body.
You are finding out that stress is a bad guy, over-exertion is a bad guy, moderation is a good guy. It sounds like you can still do a lot of things. That is great. Pay attention to what your Doc says. It sounds like he is on the right track.
Don’t focus on long term right now. There are so many possibilities for where you might be three years from now, ten years from now etc.etc.etc. I know CIDPers that have returned to nearly normal work, and some that are in wheelchair and everywhere in between. there is no way to predict where you will be. The better you take care of yourself now, the better your chances would be later, I think everyone would agree with that. The more you hammer your body now, the bigger price would be paid later.
I hope all goes well for you.
Dick S
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October 31, 2009 at 10:52 am
Mike,
I’m very fortunate to live in the Houston area where I have access to some of the best medical care in the world. My neurologist refused to put me on any kind of steroids unless it was an emergency. He insisted on IVIG only and I’m very grateful.
Like you – it hit my arms the most. And like you, I was extremely physically active. Unlike you, I am a 59 year old recent divorcee (talk about added stress!!!) and my illness came on very slowly for a very long time – almost 9 years – and it took me moving here after my divorce and changing doctors before someone took me seriously.
I went from dancing 4 nights a week, working out daily, working full time and boating and water activites on the weekend to NO physical activity, complete exhaustion, high pain and working part time in a matter of months.
It’s been a year since I was diagnosed and placed on IVIG treatments. The co-pays were expensive and stopped after I reached $5,000 limit of out of pocket for this year. Worth EVERY single penny!
I started with the normal load dose of 4 days (because I was so healthy, I received a regular 5 day load dose in 4 days). We then went to 1 day every 4 weeks. Didn’t do the trick, so 2 days of IVIG every 4 weeks. That resulted in a small roller coaster ride, so I am now on 1 day every 2 weeks. Works wonderful for me as I stay at a constant level! Also helped me at work because I now work a compressed schedule (M-T, 9 hour days, 1st Friday off for treatment and then an 8 hour day the second Friday of the payperiod). I’m also a gov’t employee and now don’t have to take leave to get my treatment.
This is exactly right for me – but it took us almost 9 months to come up with the correct treatment for me. As others have said here, each person is different and requires a different protocol.
The IVIG is kicking my CIDP into remission. I no longer suffer the extreme fatigue (a high stress day can take away my energy, so I do experience energy drain occasionally – but that’s normal for a lot of folks). But I still have to deal with the pain. And for that my doctor has me on Namenda. I absolutely love it. Another person in this forum tried it and it did not work her. But it’s been God sent for me.
I still take a lot of meds before bedtime because I still can experience the extreme muscle seizures/attacks that bring me out of a sound sleep and cripple me up with cramping head to toe … so I now take 300mg of gabapentin with my 10mg of Namenda at 7:00 pm. Then at bedtime, I take 600mg of gabapentin, .5mg of klonopin and 50mg of nortriptyline. Works great! No cramping through the night anymore.
So where am I now? I’m back to dancing 3 nights a week, working full time (I manage 2 engineering teams), enjoying my friends and dating again. The numbness in my feet/legs is decreasing and I can now do my own grocery shopping (used to cry everytime I had to push a grocery cart). I still cannot do the yard work I used to love as my arms really don’t like it and let me know! So my lifestyle is modified but improving each week. And I believe I will be able to resume my full level of activites in this coming year.
I have an amazing doctor who works very closely with me … everytime I go, I take a little pocket diary with me where I annotate anything regarding meds/attacks/numbness/etc. He says it helps him to help me.
So with your doctor, I hope you will be able to get the IVIG since you know it works for you.
I’m on Skype if you want to talk – you can see my Skype name in my profile. I wish you the very best!!!
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October 31, 2009 at 4:57 pm
Thanks again for your insight. At the moment, my doctor has mentioned drugs such as immuren, plasmapharisis, and chemo as forms of treatment.
For now the IVIG and prednisone have worked very well with me, now I think its just a matter of finding the right balance of IVIG, and the lowest dose of prednisone possible over the longest period of time.
Hopefully until one day my body will beat this disease in to submission.
I will take note of your medications in the future.
Thanks again,
Aloha,
Mike
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October 31, 2009 at 5:05 pm
Dear Dick,
Thank you very much for your personal insight. Are you a neurologist? It sounds like you have a lot of experience in dealing, and treating CIDP/GBS?
I could not agree more with your analogy of “warriors” and “consultants”, the effects of the prednisone is so so slow. Although, after about 3 weeks now of being on 60 mg., I do feel a lot better.
The challenge for me now will be to find the right balance of IVIG and the lowest dose of prednisone to keep my auto immune system at bay for the longest periods of time.
Once again, thank you very much for your great insight.
Aloha,
Mike
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October 31, 2009 at 5:21 pm
Dear Linda,
I am very happy to hear your personal experience, and thank you for sharing it with me.
Your story sounds very similar to mine, I have always been very active: gym 6 days a week, traveling for business, nights out with friends, basketball, surfing, etc.
I can still remember the erie feelings of CIDP, and always believing that I would wake up the next day and everything return back to normal.
I still cringe till this day thinking about how I continued to push myself despite having the symptoms of the disease.
Your doctors sounds like they are very experienced in dealing with CIDP. I will present your information to my neuro upon my next visit.
I keep a daily log of all the changes that I notice in my body: energy levels, pain, twitches, fatigue, etc. I also keep track of what I eat, and at what times of the day.
This helps me to better inform the doctor of any changes of improvement or regression that are occurring.
I am so happy that you have been able to return to your normal activities. When I first got out of the hospital, I was quick to try and get back to my normal self.
During therapy, they eventually had me running and lifting weights, which I had no problem with at the time.
However, after my first flare up, I decided to halt all attempts to return to my normal lifestyle.
It is very different for me, as I feel that I am operating on slow motion, but I believe that it is helping me, and for that I will try anything.
Like I mentioned in my other posts, I believe for me, along with all other CIDP patients is finding the right method for managing the disease.
I noticed that the initial IVIG treatment lasted for about 6 weeks before I began to experience weakness. However, my neuro cut me off the prednisone at too fast a pace.
This time around, I notice that the 60 mg. of prednisone began to really kick in at about 8-10 days of intake.
My hope is that I can get IVIG every few months while being on the lowest dosage of prednisone possible to keep me at bay for the longest period of time.
I will add you on to skype.
Thanks again,
Mike
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October 31, 2009 at 9:20 pm
Mike,
The key to dealing with CIDP better is to read and learn about it. An informed patient is a better patient. An informed patient makes his Dr. better.
I have just been around the site for a long time.
Thank for the kind words.
Dick S
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October 31, 2009 at 10:29 pm
Mike,
Welcome to the site.
I have GBS so can’t answer your questions about CIDP.
I’m sorry you have CIDP.
I admire the way you realize and put into words what is most important to you.
My husband and I lived in Hawaii, on Schofield Bks years ago. It is one of the most beautiful places we have been to.
Everytime I have an MRI I close my eyes the entire time and imagine the noise of the MRI is the sound of the ocean waves. Works for me.
Good luck to you Mike.
Shirley -
November 1, 2009 at 6:53 pm
Dear Shirley,
Thank you very much for your kind message.
Hope to see you again in Hawaii sometime soon.
Aloha,
Mike
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November 1, 2009 at 7:52 pm
Ivig, doesn’t cure all at first…I was lucky in that I felt ‘some’ relief after my first loading dose.
IVIG really doesn’t ‘cure’ at all? But, it does keep at bay that pesky rogue immune system as infusions simply outnumber the bad-guys.
As for Physical Therapy? Sounds like you got someone too gung-ho for this condition- Being too agressive can result in more neuro damages since our nerves[pain or no feeling at all] and muscles[becoming suprisingly fast limp!] and vascular[that swelling issue] systems are no longer working in harmony. Try and find Therapists who are familiar w/MS patients? Call before you make an appt w/anyone and ask questions! Are you familiar w/this issue? Have you worked w/MS patients? Are you aware what ‘overstressing muscles’ during a therapy session can do damage wise?
I never ask the last one? I always clearly indicate that I want a lite workout in therapy and instructions and tools to use at home [for the in-between] You need to know what to do at home and capitalize on the actual therapy time as what I call ‘stretch times’ – where you just go a little bit further. I say ‘little bit?’ because I also have to be able to DRIVE HOME! On my own! I also have found that doing multiple series of 10’s at one stretch or resistance task AT HOME I can build up those desired reps w/ far less shakyness and such. Little bits add up! Gung HO! Therapists are out in my book, listening to the patient and hearing what works for them or not is what is important. Their response is even more important! So try again! It is one way that you mite get back a bit more? Can’t guarantee total success, but, It’s sure helped me in the past. This time tho? A whole slew of outside issues have made it complicated for ME. But it is only a ‘peripheral’ PN/CIDP issue and not apt for here.
Keep faith in yourself and THAT you can GET BACK a LOT of mobility! I can attest that MOBILITY is key to part of sanity? I’ve been mostly wheelchair bound due to other med issues and it is NOT FUN! Wheelchairs DON’T do most ‘steps’ and doorways? Hah!
IF not the Mayo? Do consider Hopkins in Baltimore as well…they are more ‘friendly’ about IVIG than Mayo in my estimation and reading all over. Web up the top Hospitals at US News and World Report and get more than you’ve ever needed to know.
Good luck and keep your heart and brain anchored! Your own instincts do sound as if they are on the right track for YOU! And You’ve a doc at home PULLING for you to boot! A lucky person w/that compared to other’s stories! -
November 2, 2009 at 5:30 am
Dear Home Again,
Thank you very much for your thoughtful note.
I began the therapy on a very conservative regimen. However, due to my successful response to the treatment of IVIG, I literally had returned back to full strength within 2-3 weeks.
By the end of the month, I was mountain biking, running, swimming, etc. I have been physically active my whole life. I was not close to being in the shape that I used to be in endurance wise, but I felt that I was improving because I would not suffer the drop in energy levels that was becoming associated with my recovery.
Unfortunately, I feel that my neuro (we all agree on this) tapered me off of the prednisone at too fast a pace. At about week 6, I began to feel the symptoms of CIDP creeping up again, and then about a week or so later, had another flare up.
My neuro was apprehensious to use the IVIG again, so we tried to go back up on the original dosage of prednisone. It has been 3 weeks now, and I must say that I do feel a lot better, but the progress is very very slow, and I do notice changes day to day; sometimes improvements or regression.
This time around I am very very conscious of my activity level. My energy levels feels fine, but I am cutting off any thoughts of doing heavy physical activity for the time being. If it takes a few years, or even the rest of my life, than so be it.
I need to find a way to control this disease first, and then hope that I will one day go in to remission.
I will be visiting the Mayo clinic in Minnesota at the end of the month, it was rated quite high for neurological treatment in the US. This will be my 3rd opinion, and hopefully they can provide another opinion in terms of long term treatment.
Thanks again,
Mike
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November 2, 2009 at 12:09 pm
[SIZE=”4″]I envy you Mike!! I’m stuck in NJ with CIDP whille your in Hawaii. Great place to be sick if you have to be.;) IVIG didn’t work for me, but really only steroids did. I’m going to Johns Hopkins tomorrow. We’ll see. Good luck with the Mayo. If I didn’t get in to JHH, that’s where I was going to try. [/SIZE]
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November 2, 2009 at 12:09 pm
Aloha Michael,
Sorry to hear you are part of our ohana, it sucks!:p
But the folks here are great! I was diagnosed with GBS
in 2002 rehab for a year and 1/2 to relearn everything
walk/eat/sit etc… and went back to work as a UAL Flight
Attendant 2years later. Caught the flu got sick and never
recovered diagnosed with CIDP in 2005 and slowly going
downhill. Anywhoo, that’s the short version… I wanted
to let you know there is a Dr Graves at UCLA who is on the
GBS/CIDP board, you may want Dr Lin to consult with him.
Also I agree with everyones input I was in a hurry to get
better for my infant daughter when I got sick and my
therapist told me, “Conserve to Preserve.”
Meaning if I didn’t conserve my strength and nerves I
wouldn’t be able to save them.Take Care,
Joyce
Ko~tonk 😀 -
November 2, 2009 at 2:48 pm
Hi Michael,
Sorry you had to join our elite group here but at least you found us and it seems as though you have an good neurologist. I am also getting on the band wagon about not overdoing it – I have had lots of practice at that and can assure you that when I overdo things my CIDP gets worse, faster. I have gotten much better at understanding and balancing my energy requirements, learned when I can push it, and learned there will be a price to pay for overdrawing my energy account. Your body needs energy to repair the damage, energy to live, to think and function… all that has to be balanced and thought about more than you have ever done before in your life. It seems as though you are accepting that your life will be different from now on – this is an incredibly huge step you have taken in a short period of time. I know it took me several years before I finally accepted that I might not ever go back to the energetic and athletic person I used to be and learned how to ration and balance my energy. Since then my life has been much easier, not because my disease is all that much better, but because I have learned how to live WITH it rather than fighting it. Good luck and welcome to the forum.Julie
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November 2, 2009 at 8:51 pm
Mike, Your onset has mirrored mine, only 16 years later! I was very athletic and slowly over time lost it. I saw Dr P Dyck and Dr T Casino at MAYOs and they confirmed my neuro’s diagnosis, CIDP. Treatment for me has been mainly Plasma Exchange. Currently I am under a combined regiment of PE and cytoxin. See my threads.
The other day someone asked me how I do it. I responded, “I don’t look back”. If I dwell on what I’ve been through, I’d have other problems. You have to keep a positive a realistic attitude. Your thread really provides great details. Use this forum as it has experts who can help in many ways.
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November 2, 2009 at 9:58 pm
Hi Mike!
I’m 7lyrs old and my health never wavered until a year and a half ago.
I was feeling fatigued and discovered I had diabetes. My feet were sore and my shoes were old and the diabetic education classes said that my feet would get better with good sugar control.
A few months later after falling down several times I was diagnosed with CIDP. EMG NCV and nerve and muscle biopsy determined it was not diabetic neuropathy.
I was given 20mg of the dreaded and contrversial prednisone in October of 2008. The CIDP kept improving and I kept getting stronger legs and arms. My Neuro kept reducing the dosage all along and last August said I had improved dramatically and is weaning me off the nasty prednisone. I am now taking 10mg every day. All along I have been vigilant with my sugar control and have not needed to up my diabetic meds in spite of the prednisone.
I have needed nothing for nerve pain since last December. I still have numbness in my shins and feet and My Neuro who by the way sent the nerve and muscle biopsies to Salt Lake City for a second opinion told me to be patient, because the nerves in the feet are the last to come back.
I am going to see him again in two weeks and for the last 3 months I feel stronger and my balance also seems improved. All of this improvemnet seems to occur only inches at a time, but I’m aware that I am better.
I want to get off the prednisone and I don’t know what will happen when and if the doctor says I can stop. He did mention that if I get weak again then we can start back up to higher amounts.
We have not discussed other treatment options. I am learning more and more about this disease from this wonderful site and I think highly of my Neuro, and the uncertainty of a prognosis which is understandable in a disease such as this that seems to often run an individual course in many has still left me with hope.
The fatigue left months ago also, but I tend to overdo my physical activitiy at times and I have to rest rest rest. I am learning. If I need a nap or a breather I listen to my body. I retired soon after this disease hit and I was lucky I had my retirement in place. The timing couldn’t have been better, but If this CIDP hadn’t come along I’d still be working.
I went to clinical trials.gov and found they are doing a trial for CIDP with alpha lipoic acid.. I have been taking alpha lipoic acid and acetyl L Carnitine since I was diagnosed. I also take a sublingual B12 and my multi vits and minerals have plenty of calcium, Vit D3 and magnesium which helps fight bone loss. I also make sure I get my essential fatty acids. Omega3′ especially, but I take Udo’s Choice oil blend. I primarily eat Beef, Chicken and Fish along with lo carb veggies a little fruit, lo fat yogurt and soy milk and all sorts of nuts. I have had to eliminate grains, rice, beans, bread,, cereals , corn and peas and other high glycemic food because of my sugar and the prednisone effect. I think the Zone Diet is similar. I am also interested in learning to cook with Tofu, because I read that soy is the perfect food for diabetics.
I know you will find the right paths to follow, Mike, because your are so perceptive and earnest in finding the right medical help. I am glad you have found access to the right doctors and being on top of this disease. Please keep sharing with us and God Bless You and Your Friends and Family. -
November 2, 2009 at 11:06 pm
Hi, Michael;
I had three neurologists with three different ways of treating CIDP, but for me, the only thing that worked was the trifecta of plasmapheresis, IVIG, and pred. When I have a flare up, I have to get plasma and IVIG and increase my pred back up to 60 mg. When I’m in remission I’m on a maintenance dose of 10mg pred every other day. If I drop below that, I flare up again.
I was initially diagnosed in 94, and I floundered around with different treatments for quite a few months. Once we finally found the right treatment, I was back to work in three weeks. It took 18 months before I was at max, physically. I didn’t have a complete recovery, but it was complete enough. I was able to walk and run, but activities that require balance like rollerskating eluded me.
I’ve had a few relapses since my original dx, and I’ve lost a little nerve conductivity each time, but I’m probably stronger than I’ve ever been.
I’ve been on pred the entire time, and I have plenty of side effects–weight gain and loss of bone density being the major ones. But I would not be walking without pred. Everyone seems to be different in this respect. Pred doesn’t work for everyone, and for many IVIG alone as maintenance is enough.
My current neuro, whom I just started seeing, sees good results with low dose pred and a few courses of IVIG per year. I haven’t started that yet, but I might.
Good luck! It can take a while to find what works for you, but it won’t harm your chances for a complete recovery.
-Marie
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November 3, 2009 at 3:16 pm
Jersey Mike,
Thanks for the note. How long have you been dealing with CIDP? How bad are your symptoms?
Please let me know how your visit to John Hopkins goes.
Thanks,
Mike
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November 3, 2009 at 3:22 pm
Joyce,
Thank you very much for sharing your story with me.
I couldn’t agree more with the “conserve to preserve”. Learning to control my energy levels is the most important thing I have discovered in dealing with CIDP.
I have to be very in-tune with my body’s signals as to when I can push it, and when I just need to rest it.
When I first got in to therapy, my condition continued to improve until either: the effects of the IVIG began to wear off, or my prednisone dosage was tapered down at too fast a pace. Probably a combination of both.
Nevertheless, even when I do decide to get another round of IVIG, I would not repeat the last course of events.
Recovering for me now means to just maintain a solid energy level mentally. Physically, I believe that whatever is going on inside of my body, needs lots of time to fully recover.
Thanks again for your response.
Aloha,
Mike
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November 3, 2009 at 3:33 pm
Hi Julie,
Thank you very much for your kind note.
I feel the exact same way as you about conserving energy levels. It was definitely a lesson with a price tag on it, as I discovered very quickly what a relapse of CIDP feels like.
About 5-6 weeks after my first IVIG treatment, and a quick tapering off of prednisone, I slowly began to feel the erie signs of CIDP creeping back. However, I chose to deny the truth and continued to push my body.
Luckily I have responded quite well to the increase of prednisone from 30, back up to 60 mg. However, this time around, I am very very cautious of any and every physical activity I take a part of.
I am used to being a very social person, but now I chose my battles selectively.
Controlling my energy levels has a lot to do with being in tune with our surroundings; human emotions, reactions, and why people respond to these certain factors.
It is impossible to get me frustrated, angry, or upset anymore because I have become so in tune with my own mental state. Being aware of what makes me happy, sad, or mad, helps me to control my energy levels.
Ironically, it is in some ways a gift that I have discovered within myself. I find that other people in my life go through their life becoming upset, angry, or frustrated at the silliest things. Which to me, bounces off of me like ping pong balls.
Thanks again.
Aloha,
Mike
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November 3, 2009 at 3:52 pm
Dear Katy,
Thank you very much for sharing your story with me.
I will be taking a look at the internet link that you mentioned.
Seems like your CIDP can be controlled with prednisone alone. My doctor says that I can’t be on such a high dosage forever (60 mg), but my thinking is, if I can pop a pill every day, for the rest of my life to feel normal, what could be better than that?
I would rather live a good 5 than a bad 40.
I am positive that I can find the right long term combination of IVIG and minimal prednisone to hold off the CIDP. Until one day, my body can put the disease in to remission.
My CIDP started in my arms, and then down to my legs, but I was never completely debilitated in my lower trunk, as in my upper body where I became completely immobilized.
Lately, my symptoms have been acting very strangely, almost like a parasite harboring, hiding out, in different parts of my body.
As the symptoms of CIDP have subsided from my arms, I feel that I am now having symptoms in my feet; numbness, tingling, and needles. Also with excessive walking, or long periods of driving my foot falls asleep and goes numb. Primarily in my right foot.
I like you am also very in tune with my diet. I have decided to become a vegan; no meat or dairy because of CIDP. So far so good, I feel really healthy and have already lost 10 pounds, even while being on 60 mg. of prednisone.
You should try eating chia seeds for your Omega-3. I also find that it helps to enhance the helpful agents of prednisone by spreading out the effects over a longer period of time.
Before I began eating the chia seeds, I noticed that the prednisone would have its strongest effects maybe 3-4 hours after consumption, and by the night I would feel the fatigue coming on.
Now, I feel on a much more balanced level with my energy and medication.
I am not sure if there is any scientific evidence behind this, but just something I wanted to mention from my own experience.
Thanks again and it was very nice meeting you.
Aloha,
Mike
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November 3, 2009 at 3:55 pm
Hi Randy,
Thanks for the very thoughtful note. I will take a look at your threads.
Aloha,
Mike
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November 3, 2009 at 4:02 pm
Dear Marie,
Thank you very much for sharing your treatment plan with me.
Our neurologists seem to have the same philosiphy, as mine is also hoping to wean me off on to the lowest dosage of prednisone possible while getting IVIG boosters as required.
Could I ask what your flare ups are like? Do you feel oncoming symptoms and get the IVIG/PE immediately? Or do you need to wait until you are in wheel chair again?
Also, when your doctor jumps you back up to 60mg, how long does this last for?
When you are in remission, how does your neuro clasify this status? Does he immidietaly put you back on to 10 mg?
My neuro wants me on 60 mg. for another week (4 weeks total), then 60-50 mg for another 4, followed by 60-30.
At that point we will need to see the status of my condition. We have already agreed that if I begin to feel signs of weakness in the process we will go for another round of IVIG.
I personally wouldn’t mind another dose of IVIG, from what I am learning from this website, other members find that a frequent dose of IVIG helps in the maintenance of the disease.
Thanks again,
Mike
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November 3, 2009 at 9:13 pm
[SIZE=”4″]Still no beds availabble. Maybe tomorrow.
Mike, I”ve had it since 2004. Finger tips & toes started to go numb. Died, parilized twice, etc. I built up to where I was using AFO’s to walk up to 2 miles a day. Then I had to go to the dentst. I’ve always hated the him, I spun out of control. I’m back using a wlker.
They have a plan in place that is much different than what I’m use to & what we’ve heard. I’lll let everyone know when I get back.[/SIZE] -
November 4, 2009 at 2:03 pm
A pleasure meeting you Michael!
Chia seed are a great a great source of Omega 3’s. A website you might want to visit about the essential fatty acids is [url]www.udoerasmus.com[/url]. Udo Erasmus is a very interesting nutritionist. I think you will find his autobiography on that site also.
Another website is [url]www.IGLiving.com[/url] where you can sign up for free copy of I.G. Living in print or via E-mail. They have great articles about C.I.D.P. GBS and other neuropathic disorders.
The GBS/CIDP Foundation says: “Current theory on GBS suggest that the body is infected by a microbe that somehow resembles the nerves. So when the immune system targets the intruding infection, the nerves are attacked inadvertently.” This is only a theory, however, and who knows maybe there could be a microbe infection in CIDP. No proof for these theories but I have been taking extra Vitamin C and lysine especially since Prednisone lowers the immune system’s resistance. I don’t want the H1N1 either.I think we all have different nutrional needs depending on diet and age or diseases and lifestyle. The Mayo Clinic website denotes some of the nutrition needs of Vegan Diets.
I wish I had a cure, a vitamin, a cause, a diet or the perfect medicine for CIDP, but in the meantime I can only speculate. Perhaps it’s a combination of factors that can help. Mind, body, and environmental conditions are all factors to consider.
This website has taught me so much about the variations that exist in GBS and CIDP and the indivudal paths that these disorders take. I can only hope that someday going into remission will be the norm for everyone or that autoimmune disorders can be eliminated entirely. My curiosity and desire to get well keep me going in spite of the limited knowledge that I have. I don’t think I will ever learn enough, but then again all it takes is one good idea
Keep sharing and I hope you will recover completely.
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November 4, 2009 at 3:28 pm
Hi Michael,
I have read most of whats here. The most important thing I have picked up on your situation is that your being an athelete, you pretty much knew it immediately. You seem very in tune with how you feel and your strength fluctuations. that is key. Sounds like you are doing well and responding good with treatments.
All you have to do now is manage it. I felt the same as you. I immediately became a stop and smell the roses kind of person. greatful for every day.
I can very well speak for most that if you were on a fast track, CIDP sure
does bring it down to slow motion and changes every thing you do, feel, say, expect etc.I do IVIG once a month, take pain meds and work as an aviation tech. Just taking it day by day, enjoying the best of each day and hoping for ongoing stability.
Welcome to this forum–Tim–
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November 4, 2009 at 5:39 pm
Hello Michael, I am glad your getting better. I was diag. in 2007 and it started in my legs my left then my right. they started me on ivig treatment for 5 days and then i had to do some therapy. It was hard to work but i did it. I went all the way to dec of 08 and started feeling it in my hands. I took the flu shot and pnewmonia shot in oct of 08, i will always wonder if this did not trigger it in my hands. In feb or 09 i had to go on disability because i could not even open a glad bag, brush my teeth, I was in bad shape. I went in and another round of ivig for 5 days and to go too therapy for 5 months. I didn’t have any strength at all in my hands. The doctors had me going on total disability not going back to work. I refused to do that. I am now back to work went back in July 09. It hurts too walk a long dist. and they always feel tight. I also shake in my hands and my writing is bad, docs said it is caused by cidp. Now i don’t know if i want to get the h1n1 shot and the flu shot. So do you take the chance or not. Sorry so long and i hope your visit is helpful at the mayo.
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November 5, 2009 at 3:54 pm
Hi Katy,
Thanks for you sharing those websites with me. While they don’t shed any new light on our conditions, it is always good to know all the information out there.
I have been reading a lot about other forms of natural treatment that are worth trying. Since no doctor can tell me why we have this disease, or if it can be cured, it really means that they don’t know any more than we do on how to properly deal with curing CIDP.
I will continue to keep everyone posted on any changes, improvements, or observations that I make.
Aloha,
mike
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November 5, 2009 at 3:56 pm
Thanks Tim,
Life sure has slowed down quite a bit for me. I have also learned to control myself, and my energy levels to better deal with CIDP.
So far the prednisone has been keeping the CIDP at bay, and I actually feel pretty good, but definitely back to normal.
I am hoping to get on some type of regimen of IVIG and low prednisone, will consult with my neuro on the next visit about such a plan.
Mike
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November 5, 2009 at 4:00 pm
Dear Tjay,
Thank you for sharing your story with me.
I also notice that my hands and fingers will shake when keeping them in a dormant position for too long. For example, when holding my keys over the keyboard thinking about what to type.
However, I did find that this is caused more so by the prednisone, as I started to decrease the dosage, these symptoms did go away.
I notice that my handwriting is a lot sloppier than before, but I attribute this to the lack of strength in my grip.
Keep fighting and keep your head up. Like I mentioned before in my past threads, we have to keep searching for other solutions.
Take care and God Bless.
Mike
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April 2, 2010 at 1:48 am
This is the first time I’ve posted anything on this site. I was very depressed when I was diagnosed with CIDP in October 2009, was 56 years old. I experienced weakness and numbness in my legs and arms in mid-July, to the point of feeling almost paralyzed. The 1st neurologist misdiagnosed me w/ myastenia. I had a MRI which showed a herniated cervical disc and thought all my symptoms was from the disc problem. Other symptoms I had were: couldn’t open a bottle of water, could not cut my fingernails with a clipper, had to use a hand towel to dry myself because a regular bath towel was too heavy, difficulty walking upstairs, and could hardly walk at all. After I had cervical fusion in September 2009, but my symptoms still persisted. My neurosurgeron suggested I see a neurologist. I went to a new neurologist, and he diagnosed me in the 1st visit. I had a double whammy.
I received IVIG for 5 days in the 1st week of November, then once a week for the rest of November and every week in December. I improved so quickly (my numbness was gone, my muscles were stronger), my neuro changed me to every 2 weeks in January. By the end of the month, I got weaker. My neuro put my back on IVIG every week for 3 months. I just finished my 2nd month. I feel pretty normal now. I don’t know what my MD will do after 3 months are done. I don’t want to relapse again. I refused the steroids because of the side effects.
I am able to go back to work and lead a normal life. Although, I do get fatigued occassionally.
My neuro MD says after 1-2 years of treatment, I will recover. I don’t know if this is true or not. Hopefully it is. Does anyone have a prognosis from their doctor?
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