Diagnosed today with CIDP. I’m scared out of my wits! Don’t know if insurance will cover treatments. I’m glad I found this support group and can have people with experience help guide me through the early stages of treatment. I have no idea what expect and would truly appreciate some input.
You don't have to be scared out of your wits but I can understand why you are. CIDP shows itself in such varying ways that it is difficult to advise you overall except to say that I was diagnosed 6 years ago and my life is still great with very few changes to my lifestyle and activities. I have to suffer the nuisance of IVIG treatment in hospital every 6 or 8 weeks (pretty painless and reaction free) and I have a balance problem but I am able to climb Table Mountain a couple of times a week and walk for a few hours along the beach. You will see that I am from Cape Town so I have no knowledge of your insurance worries.
I also know that I am extremely lucky and that you may not be so lucky but I sincerely hope that you manage your new challenge well and that you have as good professionals looking after you as I have.
Keep positive, relax a bit (stress does CIDP no good at all!!) and you could still have a great life even though you have this weird disease.
All of the very best
Glen
Try and stay strong. There are many effective treatment options and many people’s CIDP is well managed and they can lead a fairly normal life. I think getting treatment started asap is important to stop the demyelination. This is a good group and you will get good support.
Hello, Although I've had CIPD for quite a few years I was only DX a few months ago. I have a slowly progressing type and have Thank God yet never been to the point that I could not walk. I had a lot of nerve pain and lately more trouble with weakened legs and hands and some coordination problem. My left hand for instance is giving me trouble typing letters that depend on the smaller two fingers. I'm currently on Low Dose Naltrexone to try and modulate my immune system and halt the progress of the disease, and a range of supplements and herbs to aid my body in fighting the disease. Antibiotics and Prednisone are on the table in a few months if I don't' seem to be at least stabilizing. My case is a little different because I have Chronic Lyme disease and that is supposed to be the underlying cause for CIDP.
I saw all that to say, let us know what your history is and what your current symptoms and proposed treatment are then people can lend you much more help and information.
It willbe a new chapter in your life. There is different degrees in wich this can effect you… Mine came on and wiped me out and put me in a wheelchair. But I have improved and stress can cause a tail spin. Focuss on what you can do and you will. Pace yourself and you will make steady strides forward. Stress and you will regress… SSDI picked me up within 1.5 months of applying without an attorney. This is parley due to a great nuero. Hang in there . Stabilize you support system and you will fare well.
Hello Zepplin,
It is a bit worrisome when you start reading the literature out there about CIDP, but the good news is there are treatments out there to reduce the symptoms and in some cases almost eliminate them. If I knew then what I know now I would have gotten on the IVIG treatment as soon as possible. If I could have, That would have been my treatment of choice. However I didn't have Insurance at the time and they put me on Predisone (Not so good Side Effects), which was effective and cheap for about two years. I'm on SSDI now and Medicare covers it. I would think most insurance should cover your treatments. As others in this thread have said, Don't delay in getting treatment, most important! There will be an adjustment period to except this as part of your life, now. But it is not the end of life! God Bless and Keep Your Chin Up, and Press on!
I hope my case will reassure you. I was diagnosed in 2009, and went through some bad times. But once I got the right diagnosis and the doctors settled on the appropriate treatment, I was stabilized and began to improve. Now, I walk without a cane and can handle most ordinary activities. I am not as strong as I used to be, and I get tired more easily, but I can lead a pretty normal life.
What you will find from reading this forum is that everyone with CIDP is a little different. What works for one, may not work for another. Don't be discouraged if the first treatment (or the first dosage level) doesn't work for you. Read and learn as much as you can. And don't be afraid to challenge your doctor. If you can find a doctor who is experienced with CIDP, that is great, but CIDP is so rare that many doctors are not familiar with it. I was fortunate to find a neurologist with lots of experience with CIDP, but my family doctor tells me that I am educating him. You will be your own best advocate.
The first long-term treatment my neurologist tried with me was high doses of prednisone. I am unfortunately one of the people for whom prednisone is totally ineffective. When we realized that, he switched to IVIG, which worked beautifully. You may find that the first treatment works for you, but if not, don't be afraid to push for something different. The quicker you can get effective treatment, the less likelihood of permanent damage.
I am also a strong advocate of regular exercise. It is easy to lapse into inactivity, and then you lose muscle strength, along with losing nerve conductivity, what I call the double whammy. It will be hard to make yourself maintain activity, because everything will be more difficult, but it is important to do so. Your doctor may be willing to prescribe physical therapy, which can be very helpful, especially if you can find a therapist with experience with CIDP (or even experience with Guillain-Barré syndrome, which is similar in many ways).
Good luck, and let us know how you are doing!
Bill
Hi Dancemom,
I was diagnosed in July - and get monthly IVIG infusions. My insurance denied the treatments at first stating that they "were not proven as helpful in the treatment of IVIG". But have patience and faith in your doctors and they will get the insurance to pay for them --- hopefully depending on your insuance.
I do have the annoying tingling/numbness in my feet/hands, but so far life is good. Minor changes have to be done..know your limitations and listen to your body. Keep a positive attitude.
Love this site and all the great advice and wonderful people from all over to share thoughts/ideas and frustrations.
People here have been so supportive of me in the past 6 months since my Dx of CIDP, and will be just as supportive of you. They can calm you, inform you, and refer you to links for further info. I have benefited greatly — as you will too. Take a deep breath and take everything day by day. Deal with it all as it happens, not before. Worry and stress seem to make matters worse.
We were all scared when it happens.For me it was over night.Numb feet and hands then in a walker.Life sucked at that time.I was a very active guy and then I needed help just to eat and walk.But for me their was a miracle cure and now I`am back 100% playing golf every day and riding my bike.IVIG treatments did nothing for me my miracle cure was steroids.They turned me around in weeks.I have now been off ALL medication since july 3rd.And doing awesome.So my friend things will improve you just have to have faith.Good luck with what ever treatment works for you.Its different with all people.
TAKE EVERYTHING WITH A GRAIN OF SALT, in other words, believe nothing about what you read about CIDP. This disease is different for every person. Always question and READ the professional literature.The treatments are shotgun approaches by neruoloogist who diagnoses CIDP, but CIDP is really thousands of different disease forms. If IvIG works, then you have a lower neuron disease. For me it has taken 20 months of massive IgG doses and immosuppresssents; still I relapse to weakness, fatigue and disease angst etc, many days each month.
I agree with previous comment that age is a factor in recovery and also at what point the disease was first diagnosed; the earlier the better it appears.
Keywords, in order of precedence, significance TO ME: Node of Ranvier, Sodium ions (Na+), conductance, T- cell, NK cell, CD4, CD8, myelin, weakness, fatigue, rigidity and depression.
I place myelin near last because in my most recent reading it is stated that myelin may not be the only evil culprit, or may be only part of the problem. The Nodes of Ranvier may be a factor that starts the disease.
ENCYCLOPEDIA BRITANNICA:
http://www.britannica.com/EBchecked/topic/417103/node-of-Ranvier
CLICK IMAGE OF NEURONS
MY THEORY: The Nodes of Raniver are like shorts in a live wire, suspended in liquid (well, somewhat, but cell-mediate in normal conditions for better ion propagation). If this is happening to a wire in a pail of water in your garage, the covering on the wire would deteriorate faster due to higher ion concentrations.The wire would also deteriorate , ie, (axon damage). In the body, this change in electrical conditions, IMO and in others, signals a non-self condition in the meylin and attack by T-Cells & NK cells get incorrect signaling and don't turn off.
In the body, NOT ALL axons are myelinated, the result is that electrical signals travel much slower, because they are programmed to move slower ... but they do travel to other neurons and targets. As would demyelinted axons in the peripheral nervous system, starting at the lower neuron junction in the gray matter of the spine. This afferent junction IN THE SPINE effects many lower neurons above and below, and also the brain's sensory interpretations (from the posterior node of the spinal column). Slowed 'down-signals' from the lower neurons (or brain) cause muscle weakness. Slowed 'up-signals' to the lower neurons are sensory nerve disruptions and not usually an initial symptom of classical CIDP. this is the textbook definition.
At this point it gets very complex. Is the axon releasing chemicals to mediate the Node of Ranvier electrical imbalance, or initiating the attack on meylin to correct the NoR ion imbalance, or are other other cells of the nerve casing/sheathing overreacting???. Has a genetic change happened that tells all axons to react, or all NoRs to react, or some other protein to fold incorrectly, or is RNA/DNA processing in the nucleus o thef Schawan cells reacting to external NA+ ion imbalance.
See how complex it gets. It really could be anything, I think it is nan0-electrical and at the genetic root.
If CIDP is genetic then food and liquids from the specialty health and natural foods store will do little but improve your general health.
If you have diabetes you're in for a real battle, as they present similar destruction of cells.
My advice is to exercise like a crazy, extreme sportsman. With extreme muscle tone you are in a much better place to continue treatment, repel relapse bug-a-boos, changes of treatment(s), other chronic diseases and life changes.
CIDP has become the vortex where all my time, emotions, work, life events, happenings and happiness are sucked into it.
Be skeptical, some people do not improve with the prescribed treatments for CIDP. Many time the diagnoses is incorrect. Insurance problems and hospitals will kill you if you aren't careful.
AND, remember to turn off the electricity in the garage before you deal with any bad wiring! LOL
I have been receiving IVIG for almost 4 years. Lack of coordination (wobbly walking) is an issue for me. I have been lapse in doing my physical therapy at home and I can tell you my condition has worsened. It is a cycle, stress-fatigue-then not actively working on strengthening my disappearing muscles. It is so important to put yourself first at a time like this, after 4 years I still haven't quite accomplished that, but it is so important to give yourself the time to battle this disease. They started me on pain meds at the beginning, I have found this to be my number one problem. I hate narcotics, the side effects, and the stigma from taking them. I wish I didn't have to take anything, but when the pain gets elevated it makes movement difficult. The pain clinic is required to do monthly urine tests and my insurance gets billed over $2000 a month for them! I would recommend going slow on the pain meds and concentrate on meditation and yoga only positive side effects there. Are you in a place where medical marijuana is legal, it may help with your stress and pain. When you found this site you took a positive first step. I wish you well.
Nancy,
If you can, try to see a physical therapist. There are specific exercises for balance problems. Actually, any activity or exercise that strengthens your leg muscles should help. There are many small muscles that work together to maintain balance, and if those get weak, it is harder to keep your balance. It is possible you have some damage to the proprioceptive nerves, which tell your brain how you are oriented in space - I have heard differing opinions as to whether CIDP also attacks proprioceptive nerves. But, regardless, do all you can to keep you muscle strength up.
Also, if you have to get up at night, be sure to have nightlights, or turn on lights. Vision contributes significantly to balance, and when you can't see as well, your balance gets worse. A therapist demonstrated this very clearly to me by having me do certain exercises with my eyes open, and then with my eyes closed. I could do much less with my eyes closed.
Get rid of throw rugs and any other slipping or tripping hazards around the house. Don't take any chances of falling. The last thing you need now is to injure yourself in a fall. As you said, it is important to take care of yourself, and focus on getting better.
Good luck,
Bill
Thank you Bill,
I rarely sit down, always find something to keep busy. The designed exercises by my physical therapist seem to target the needed muscle strengthening. I know what you mean about lighting and good vision helping. When I look at the stars I have to hold on to something, looking up is next to impossible. I can't get rid of all tripping hazards( I have two rescue dogs 65lb and 92lb) but they also let me know when it is time to rest. My reflexes are shot as well as most of the feeling in my feet and legs I'm impressed and grateful that I can walk at all. Peace
Uncle Bill said:
Nancy,
If you can, try to see a physical therapist. There are specific exercises for balance problems. Actually, any activity or exercise that strengthens your leg muscles should help. There are many small muscles that work together to maintain balance, and if those get weak, it is harder to keep your balance. It is possible you have some damage to the proprioceptive nerves, which tell your brain how you are oriented in space - I have heard differing opinions as to whether CIDP also attacks proprioceptive nerves. But, regardless, do all you can to keep you muscle strength up.
Also, if you have to get up at night, be sure to have nightlights, or turn on lights. Vision contributes significantly to balance, and when you can't see as well, your balance gets worse. A therapist demonstrated this very clearly to me by having me do certain exercises with my eyes open, and then with my eyes closed. I could do much less with my eyes closed.
Get rid of throw rugs and any other slipping or tripping hazards around the house. Don't take any chances of falling. The last thing you need now is to injure yourself in a fall. As you said, it is important to take care of yourself, and focus on getting better.
Good luck,
Bill
Bill and Nancy, I am affected by proprioception changes from CIDP. They started first in my legs and then my arms and hands, at least it was for me.
Working with a PT is critical to retraining your proprio system just as it is for athletes.
Balance can also be improved with a device that resembles a bathroom scale. By standing on your scale you become unstable but with repeated use your muscles learn again to maintain your balance EVEN WITH YOUR EYES CLOSED. I just cam back from the gym where I enrolled again with a PT for rehab of muscle, gait, and balance. Don’t wait for your neuro to initiate this. Ask PT for their thoughts then take them to your Neuro for a prescription. I wish you better balance and strength in your gait and your life. Bob
nancy said:
Thank you Bill,
I rarely sit down, always find something to keep busy. The designed exercises by my physical therapist seem to target the needed muscle strengthening. I know what you mean about lighting and good vision helping. When I look at the stars I have to hold on to something, looking up is next to impossible. I can’t get rid of all tripping hazards( I have two rescue dogs 65lb and 92lb) but they also let me know when it is time to rest. My reflexes are shot as well as most of the feeling in my feet and legs I’m impressed and grateful that I can walk at all. Peace
Uncle Bill said:Nancy,
If you can, try to see a physical therapist. There are specific exercises for balance problems. Actually, any activity or exercise that strengthens your leg muscles should help. There are many small muscles that work together to maintain balance, and if those get weak, it is harder to keep your balance. It is possible you have some damage to the proprioceptive nerves, which tell your brain how you are oriented in space - I have heard differing opinions as to whether CIDP also attacks proprioceptive nerves. But, regardless, do all you can to keep you muscle strength up.
Also, if you have to get up at night, be sure to have nightlights, or turn on lights. Vision contributes significantly to balance, and when you can’t see as well, your balance gets worse. A therapist demonstrated this very clearly to me by having me do certain exercises with my eyes open, and then with my eyes closed. I could do much less with my eyes closed.
Get rid of throw rugs and any other slipping or tripping hazards around the house. Don’t take any chances of falling. The last thing you need now is to injure yourself in a fall. As you said, it is important to take care of yourself, and focus on getting better.
Good luck,
Bill
This was an enlightening exchange for me. Over the last couple of years I became increasingly aware of my own balance issues. A year ago I was evaluated by an ear specialist on referral from my GP for balance problems and other than hearing loss was given a clean bill of health with regard to my balance. I am unable to stand with my eyes shut, I first noticed this in the shower when washing the face. I realized that in a number of situations such as the night lights mentioned that vision is critical for me to balance. I used to have great balance and resistance to vertigo verified by Air Force testing for a pilot certificate. Now I don't dare to walk on uneven surfaces such as cracked sidewalks without a cane. I have been walking 45 minutes a day 6 days a week for over 1 1/2 years except when I'm having more problems. It know that it helped me a lot to get that exercise now I have a better idea why it helped.
I don't know if anyone has input on this but my specialist recently kicked the Lyrica up from 75 to 150mg 2 X a day for pain and tingling. It works wonderfully but after about 5 or 6 weeks I still seem to have a few hours a day when I'm still light headed and a bit more unstable seemingly from the Lyrica. The near freedom from pain, the electrical shocks, and the intense tingling is wonderful at this dosage. But I have to be careful about walking, and driving during this period. Does anyone know from experience if what I think is going on with the Lyrica will pass?
AND, remember to turn off the electricity in the garage before you deal with any bad wiring! LOL
I had to laugh at this one, nearly 50 years ago some helpful soul flipped a breaker back on while I was up up on a 30 ft ladder fixing a lighted sign at a business. That was exciting! Somehow I managed to stay on the ladder as I was given a really good jolt. I survived no worse for the wear, and a little wiser.
I finally had to get off Lyrica and traded for Gabapentin b/c of the balance and lightheadedness issues. I HAD to use a cane as you point out. In the shower avoid putting your head BACK while your eyes are closed. It really minimizes the vertigo/unsteadiness. Also, I have three grab bars in the showers so on my bad days, I can always have something to touch or grab to better my proprioception which results in better stability on your feet. OUCH with th electric shock! Point taken.
Yitzi said:
This was an enlightening exchange for me. Over the last couple of years I became increasingly aware of my own balance issues. A year ago I was evaluated by an ear specialist on referral from my GP for balance problems and other than hearing loss was given a clean bill of health with regard to my balance. I am unable to stand with my eyes shut, I first noticed this in the shower when washing the face. I realized that in a number of situations such as the night lights mentioned that vision is critical for me to balance. I used to have great balance and resistance to vertigo verified by Air Force testing for a pilot certificate. Now I don’t dare to walk on uneven surfaces such as cracked sidewalks without a cane. I have been walking 45 minutes a day 6 days a week for over 1 1/2 years except when I’m having more problems. It know that it helped me a lot to get that exercise now I have a better idea why it helped.
I don’t know if anyone has input on this but my specialist recently kicked the Lyrica up from 75 to 150mg 2 X a day for pain and tingling. It works wonderfully but after about 5 or 6 weeks I still seem to have a few hours a day when I’m still light headed and a bit more unstable seemingly from the Lyrica. The near freedom from pain, the electrical shocks, and the intense tingling is wonderful at this dosage. But I have to be careful about walking, and driving during this period. Does anyone know from experience if what I think is going on with the Lyrica will pass?
Thanks I'll keep Gabapentin in mind. I can deal with this for a while yet if I need to, the side effects are better than at first on 150 mg. They totally went away after a couple of weeks on 75 mg so I've been waiting to see if I could adapt to 150 mg.
The proprioception issues are very strange, and difficult to describe. I heard one woman with CIDP say, "I sometimes lose track of where my legs are." That is as good a way of describing it as I know, but it still isn't exactly what I experience. I am better now, but I used to occasionally stand at the top of a set of stairs, and panic because I didn't know how to walk down, or didn't quite know how to move my legs and feet. After a few seconds it would pass, and with care I could walk down, but I had to be very careful, and always think about what I was doing.
Geepster said:
I finally had to get off Lyrica and traded for Gabapentin b/c of the balance and lightheadedness issues. I HAD to use a cane as you point out. In the shower avoid putting your head BACK while your eyes are closed. It really minimizes the vertigo/unsteadiness. Also, I have three grab bars in the showers so on my bad days, I can always have something to touch or grab to better my proprioception which results in better stability on your feet. OUCH with th electric shock! Point taken.
Yitzi said:This was an enlightening exchange for me. Over the last couple of years I became increasingly aware of my own balance issues. A year ago I was evaluated by an ear specialist on referral from my GP for balance problems and other than hearing loss was given a clean bill of health with regard to my balance. I am unable to stand with my eyes shut, I first noticed this in the shower when washing the face. I realized that in a number of situations such as the night lights mentioned that vision is critical for me to balance. I used to have great balance and resistance to vertigo verified by Air Force testing for a pilot certificate. Now I don't dare to walk on uneven surfaces such as cracked sidewalks without a cane. I have been walking 45 minutes a day 6 days a week for over 1 1/2 years except when I'm having more problems. It know that it helped me a lot to get that exercise now I have a better idea why it helped.
I don't know if anyone has input on this but my specialist recently kicked the Lyrica up from 75 to 150mg 2 X a day for pain and tingling. It works wonderfully but after about 5 or 6 weeks I still seem to have a few hours a day when I'm still light headed and a bit more unstable seemingly from the Lyrica. The near freedom from pain, the electrical shocks, and the intense tingling is wonderful at this dosage. But I have to be careful about walking, and driving during this period. Does anyone know from experience if what I think is going on with the Lyrica will pass?