April 9, 2020 at 4:12 pm
Hi Peter and Welcome. You may have read my posts about my friend Jeff. Your note reminded me of him in the early stages of CIDP. If you haven’t read them you can see them here. I don’t want to repeat so much information but feel free to ask about anything. I think it is normal and a good thing you may have MMN or maybe even CIDP. Both are more manageable than ALS although strides have been made there too. Jeff was initially diagnosed with a ‘let’s call it CIDP but realize it could be MMN or ALS’. He had the spinal tap etc and it supported the diagnosis. It was the most dreaded thing I could imagine hearing. Everyone’s worst nightmare right? That was a year and a half ago and Jeff has been on quite a ride but today the news is comparatively good. He began having issues in 2019 starting with hip pain. The X-rays showed a congenital defect and the hip was replaced. He recovered normally. Next he developed weakness in his legs but nobody knew what it was. Finally when he could no longer walk without falling he went to the ER at his primary care’s suggestion. He was seen by a neurosurgeon who discovered via MRI severe stenosis. The surgeon,a Johns Hopkins grad and locally respected said it was horribly inflamed and a mess but he got the nerves untangled and free. Expecting a long recovery Jeff began that process. But he never recovered. At a follow up with the surgeon several weeks afterward the surgeon was visibly alarmed at a lack of recovery and called a colleague who was the Head of Neurology at the University of Florida Shands Research Hospital in Gainesville FL. They agreed to see Jeff the next day. Dr. Paul Wymer who had been an ALS physician in Syracuse was now at Shands Neurology diagnosing and developing treatment plans for patients with rare neurological symptoms and diseases. He did the exams and tests that day. He ordered a spinal tap and within a day of the results started Jeff on IVig infusions 4x a month. Kind of where you are now. Keeping in mind every patient is different, every treatment is different, every response to treatment is different Jeff entered the twilight zone. We all did. The infusions did nothing to stop the ravages of the disease whatever disease it was. We didn’t know and the doctor didn’t know. But we knew this doctor had an understanding of things nobody else did so we put Jeff in his hands and trusted and believed if there was a way through this for us he would be it. I am not a blind faith person but in this situation we just rolled – no second guessing- no freaking out – just hard hard work. Almost 4 months in Jeff stopped getting worse. By then he was down to 140 lbs., all his muscles atrophied, skin hanging off bones. He could no longer use his legs at all and then he lost use of his arms and his hands were almost gone. He had to be lifted from bed to wheelchair and everything had to be done for him. He could still feed himself with his hands. He was one day away from going into nursing care when I noticed a very slight change which was as bad as he was he had stopped getting worse.i told the doctor so he immediately started massive prednisone which kicked up the tiny effect of the infusions. Very slowly the deterioration process stopped and ever so slightly improvement began. It was not long after that the doctor said he could take ALS off the table. That was a happy day. He left MMN out there for a while longer and in another month by June he called it CIDP. It had been 6 long months of struggle with finding care, paying bills, dealing with insurance and a medical support community with no knowledge of the disease or ability to provide support.By last July he was well enough to drive his car. He drove it 1400 miles to a cabin up north where we installed a lift to get him in and out and he continued to work at walking without the walker. From the minute he could move a limb slightly he worked it with weights for hours every day. The muscles started to come back. We cooked and fed him and fed him. By fall he was starting to walk without the walker holding on to walls and furniture. It’s been slow but steady ever since. He has rebuilt his construction business. He has ridden his Harley a few times recently. His legs are not as strong anymore, his balance needs work and his feet feel fuzzy. He is down to one infusion per month and minimal prednisone. They are weaning him off slowly which is scary fearing it will leap back to life but we are cautiously optimistic. We are feeling quite a bit like normal humans again. I would have never made it through this without this forum and the organization behind it. I can’t tell you how this will go for you but I can tell you what your story is so far has some plus points. Your doctor sounds well versed which is huge. Many many people on here have not been diagnosed or are and can’t find treatment or they get help and it’s taken away. My advice is read everything you can find on here. Talk to other people who are a few steps ahead or behind you in the journey. It really helps to have information and to keep mentally strong with others who share the burden of it. They help you and you help them. If you have MMN you will find others here to add to your skill set. There is a man I met through here who has GB but he is the one who was there in my darkest days helping me find people with CIDP willing to shine a light on the scariest parts like nursing home care and patient depression. I am a caretaker so there were others who supported me and each other in their patient support mode. Jeff is the most stubborn person I’ve ever met. I felt is was his worst flaw. As it turned out it was his greatest tool. He never gave up, he never gave in. He forced himself to exceed impossible expectations he set for himself. He would not have made it back without that determination. He lost everything but his house and he almost lost that. We know CIDP is chronic and can come knock’n any time. We don’t worry about it but it is definitely a consideration in every part of life. I feel if/when it comes this time we will have resources like private pay health care and food delivery and transportation and trash pick up and all the things we didn’t know before. Knowledge is power and there is a lot of it here. And generous people who share their knowledge with understanding, caring and compassion. I’m so glad you found this place because I hadn’t updated Jeff’s progress for a while and now I have. I’ll look forward to seeing you along the way and feel optimistic now that I’ve seen what I’ve seen that there is a lot of promise out there with these rare new diseases. All my best.December 8, 2019 at 7:11 pm
Somebody in these forums told me a few days ago the Cellcept is working for them now post IVIg w/ Prednisone. I would want a proactive doctor that is willing to try different combos if what you are doing isn’t working. Our doctor is the boss and has a track record with CIDP but he is still very open to suggestions or willing to look at the successes of others in here have had. The hand weakness came third to my friend Jeff – first he lost his legs and then feet then his hands and finally arms. He said his hands and feet felt numb and big hugely swollen but they were not swollen or big. He ultimately lost the strength and dexterity in his hands before finally losing the arms. It allfinally started to get a bit better after several months of IVIg. First it was 3 months of continued decline on IVIg and in the fourth month came the introduction of 65 mg Prednisone. That really turned the tide but not fast. A slow progression. His hands and arms were last to go and first to come back. His legs and feet have been slow coming but he can walk fairly ok without chair, walker or cane but it’s hard. His feet remain messed up and painful. He is down to 2 days of infusions per month and about 20g of prednisone. It’s like walking a tightrope of fear that it will go south again drastically. It’s what his doctor calls the art of it. They are getting him back to as normal as you can get and off the meds without losing the remission and having a setback. He has never given up for even a minute and works out everyday. He was extremely irritable and difficult for quite some time. Understandable. His mental acuity was there but kind of sluggish like his hands were. It has come back pretty much. Do not give up until you try everything you can!! Everyone is different and there is no way to know what will work in what combination or when. There are some statistics for CIDP but in reality you guys who have it now are making the statistics because the previous stats are based on very few people. My theory is – if you’re going to be Guinea pig or lab rat anyway you might as well go for whatever treatment you can talk them into giving you. It’s your shot to call. This forum is the best place you can hang out for knowledge and caring support. The people in here are the only ones who know exactly what you are feeling. Sharing and helping the other patients here helps them and will help you to. Everyone needs to help somebody else to feel needed – and you are a valuable resource in here. May the force be with you.December 6, 2019 at 3:33 pm
I posted on another CIDP section the other day in this forum questioning if taking IVIg without prednisone is as effective. I care-give for my friend Jeff who was diagnosed almost a year ago. He went from a viable, strong, general contractor, biker, athlete to a quadriplegic in 3 months time. He got a quick diagnosis and started IVIg very early onset but it took 3 months of IVIG infusions 4x month most of the time spent getting worse. When I noticed one tiny sign things might be different I told the doctor. He added about 65 mg of prednisone. Within a couple of weeks Jeff finally started to see very small improvements. Almost one year later he has climbed his way back very far. Read what I wrote in detail because his story is similar to yours. I think you will be encouraged and want to ask your doctor to figure out what can be done to mix up be kick start the meds and try to shorten recovery time. It looks like early diagnosis and aggressive multiple treatments ASAP might be effective. I see it working for Jeff as he continues to improve and get some of his life back. I wish you the best – stay in theses forums and search for answers. Be your own advocate. It is what got my friend the information, fortitude and courage to fight.December 6, 2019 at 12:01 pm
I just wrote a long update in another section of this forum intended to help people see a one year positive story about diagnosis and treatment. Positive is a relative term with CIDP but we have learn to look at things differently
Than we used to. I am a caretaker for my lifelong friend and one of the things I think it’s important for you to know is you are the most valuable resource your grandson has. He cannot afford to lose you. Statistically more than 30% of caretakers die before the patient does. You must take commit to taking care of yourself first. I can give you some tips, you can get a counselor through United Way or other local agencies, church, there is help for you at no charge.
You are an amazing person and you are doing a fantastic job of blazing your path through daunting challenges. CIDP is an overwhelming thing to wrap your brain around alone never mind the other issues complicating your situation. Your rampant anxiety is not good for you. You need to get in control of you first of all. Your life and your grandson’s depends on it. Warrior-like people like you – and me – are really good at solving everyone else’s issues. We don’t even acknowledge we too may have issues and it would feel too selfish to draw attention to them if they existed. This is way too much for anyone, even Wonder Woman, to handle alone. Contact me if you like and I’ll suggest things that helped me because so much of where you are is familiar. Your patient is going to need you to be healthy and strong and he is going to need to be too. God bless you and your husband and grandson. There is hope for him to get better!!December 3, 2019 at 3:18 pm
Mark Robichek – I came on today to update people in this forum because I have hope to offer. This past year has been an unbelievable nightmare and I know many people here are living through it themselves. I am a caretaker of a CIDP patient. My friend Jeff is now 70 and was diagnosed with CIDP last January 2019 following successful hip replacement surgery in Fall 2018 and back surgery to treat pain and walking issues due to a compressed nerve in December 2018. He is a general contractor and has been an active athlete and biker all of his life. He lives in Gainesville, FL. When he didn’t recover as expected from the back surgery after more than 6 weeks his neurosurgeon realized something else possibly serious was going on and immediately made an appointment for him with a colleague of his at The University of Florida Shands Teaching Hospital and Medical Center’s Neurology Department. He was seen the next day by Dr. James Paul Wymer who has a background in ALS and is in charge of diagnostics and creation of treatment plans for hard to diagnose neurological diseases. He and his team spent a few hours examining Jeff, testing him, and discussing his symptoms.They scheduled him for blood work and a spinal tap. It took a couple of weeks to get the results of all the testing back but when it came Dr. Wymer immediately started him on IVIg hoping that if he responded it would help narrow the diagnosis to CIDP which he suspected. He needed to rule out some other things like ALS and a response to IVIg would indicate that his diagnosis was probably correct. (This is a very simplistic synopsis of a complicated process).
Jeff began IVIg infusions in January 2019 and by late April 2019 he was essentially a quadriplegic. He had no use of his legs and very slight use of his arms. He had some hand movement but no strength. He was confined to a wheelchair which he didn’t have the strength to propel and had to be lifted from bed to wheelchair to chair and back to use the restroom. We bought a used Hoyer lift but we still had nobody there to operate it. He was bathed and dressed by others, he was still able to feed himself but silverware became problematic. For 3 months he had IVIg 4 days in a row once a month with no improvement and more deterioration. He has a Humana Medicare policy but it provided little to no home health care assistance and none of the services provided were appropriate or useful for a CIDP patient. Friends/volunteers took care of him and he could afford a small amount of private pay assistance. He was on the verge of going into a nursing home only because it was a Humana time limited benefit available. I filled out emergency Medicaid applications, met with social workers and tried to learn about what he needed to do to live and where and how to find it. That’s when I noticed a very slight almost imperceptible change. Whenever he tried to move in bed which he could barely do he would scream loudly – not in pain but with the exertion it took to simply try to move. I noticed one night that he moved but there was not as much screaming meaning not as much exertion? I told the doctor who was feeling very disappointed the IVIg didn’t appear to be doing anything and fearing we were looking at ALS. He decided to introduce prednisone in a pretty large dose. When he didthe symptoms didn’t get worse during the next couple of weeks. Jeff wasn’t getting better but at least he wasn’t getting worse. Within a few weeks,he was clearly beginning to get a bit of strength back. He could hold his own PowerAde bottle which was huge. Meanwhile we knew the infusions were about $18,000 per month and since he didn’t have the money to pay them he was sending them $100 per month hoping they would accept it and continue to provide it which they did. One day he received a call from the pharmacy his doctor was using that his IVIg wasn’t available anymore but they would try to find something similar and they did.I think these changes are not uncommon but it’s important that the doctor knows it and is certain the new provider is offering the same quality product. After about 6 months he received a call from the pharmacy that he would not be charged for it anymore at least for now. We don’t know how or why that happened but it was another miracle on top of him starting to get better.
In June he decided he would drive to Michigan from Florida to get to our cabin. Nobody wanted him to do it but he was well enough to use his walker, the doctor had cleared him to drive, and he has been working out starting with lifting cans before moving to the smallest weights in his set. He left the dog home because he couldn’t walk her. But he did stop for gas a few times and actually checked into a hotel for a night. He drove 2 12 hour days in a row and arrived all in one piece. My brother and I found an old antique porch lift on Craig’s list for $400 (very rusty) and we used it in lieu of the stairs to get him up and down. His determination that this will not conquer him is mighty and I think it helps him keep up the fight. Attitude is important. He is a very stubborn person and it works for him.
This is December. He has been back at work on the construction sites for several months and every day he is able to do a few more things. He lifts weights at home and goes to the gym almost every day. He drives and walks without a walker. The wheel chair is parked and he is not using a cane at this point preferring to hold onto things as he goes. He still has a handicapped parking sticker and has learned to order groceries from the local Publix online and have them delivered. The county picks up his trash at the door so he doesn’t have to take it out. An independent person, he has hated being at the mercy of other people’s schedules and needing their help. But is extremely grateful to those friends who got him through the year. One of his friends has a restaurant and suffers from a serious autoimmune disease himself. Every week he personally brought dinner over and sat with Jeff and whoever else was there and shared a meal and some social time. Jeff is doing monthly infusions 2 days back to back having tapered down from 4 slowly. He is also tapering off the prednisone. The doctor makes all those decisions. The same infusion nurse has come to the house since he started which has made it more comfortable.
He hasn’t spent much time on this website or in the forums but I have. Without the knowledge and sharing and caring of people like Jim and a GB patient in Florida where I live who I met through this site I don’t know how we would have mentally or physically survived any of it. The caretakers have a set of issues of their own and my connection here helped me understand that. People ask me now “is Jeff cured”? The doctors says “nobody knows” – it may come back and it may not – there is no way to know when or why. He says “now that we know the science of it we are learning the art of it”.
I have several points to make to those of you who are patients but not yet diagnosed or who are patients not getting a good result from your treatment or who are caretakers along on the journey.
– the more you learn about this the less daunting it becomes. There are doctors who can help you and resources to help you live. All those things are available from reading and participating in this forum.
– try not to give up hope or put a time frame on when you think you should be at a certain place in treatment or recovery. My sister’s entire church has kept him on their prayer list for a year and one of the members said at one point “remember, things do not happen in our time they happen in God’s time”….that tended to settle Jeff down a little even though he isn’t really a church guy himself.
– if your friend or family member found themselves in this situation you would want to help them because it would make you feel better so please ask for help and let those who offer do whatever they can. One of Jeff’s hardest things was to take help from others but when the work is spread around it makes it easier for everyone. One of his close friends offered to pay the house payment when things got really tough and one month he accepted the help because he had to. The friend later told me how happy he was to be able to do something during such a terrible time.
– everything is important but in retrospect I think the most important thing for Jeff was finding a doctor who knows the disease and the early diagnosis and treatment he received. Large, well funded, medical, research and teaching hospitals and medical centers seem to be where doctors with experience in rare things like this are located. I think it is because they gravitate to or are recruited by institutions who are on a mission to be a world known medical mecca. Most of these doctors are scientists too and they want to immerse themselves in their research and the treatment of their patients. That takes funding. Everyone can’t go to The Mayo Clinic but most states have some kind of medical research facility usually attached to a university. I encourage anyone who can to get to a place where an medical team experienced with CIDP is available. If you don’t know how to do that find a friend who is computer savvy and wants to help and put them in charge of it.
– for caretakers I would say you are no good to anyone if you are dead and more than 30 percent of older caretakers do not outlive their patients. Ask for help. Prioritize and let some things go. Try to find an hour each day with your patient to do something enjoyable – read, listen to music, talk, watch tv, have a visitor. Find another hour each day when you are alone and not asleep. Walk outside and get fresh air everyday. Get church or family members to come by and spell you so you can get time away from the house or in the house without being engaged in patient care.
Jeff has been told there is no known cure as yet for CIDP. He knows it is chronic meaning it comes back. He knows there are a few other treatments if the one that is currently working stops doing so which is not uncommon. But as his doctor says nobody really knows if, when, where or how. We have everything in place now so if/when it comes again we will not be so totally at the mercy of it. He has sold everything he once had except his house in order to qualify for medicaid if and when he needs to. He has a collection of ‘things’ – some described here – including a sit to stand chair donated by a friend whose late brother had it. I found big huge tread tires for his walker on Amazon so he could get around a construction site without falling. You can’t believe how many people with walkers come over and ask where they can get them. For now things are in storage. We know who to call and how to have tracks installed on the ceiling of the house to move him around in a lift. We found a private pay home health care worker who is standing by in case he needs her again. We did everything in the past year on a need to have emergency basis but now we are as prepared as we can be for the next round.
I never thought I would be happy to have a diagnosis of CIDP for him but when the other choice was ALS I was relieved to get it. I’m told ALS has a better prognosis now than it once did so those scientists are at work and that gives me hope too. Now that a year has gone by I see light everyday he can be in this remission, I have hope it will last forever, and I feel prepared that if, need be, we will live to fight another day.
Many thanks to everyone who helped us and continue to help us and themselves as well. I will stay with this group for as long as I can no matter how it goes with Jeff. I will keep you all up to date in hopes there will be something in his story that will help give you an idea for your own situation. Bless each and every one of you who have CIDP that you may find good things on the road ahead that take you to a better place. That is my prayer.
Florida JanJune 9, 2019 at 7:48 am
My approach as the caregiver for my friend Jeff is to look at everything out there that sounds like it might even remotely help and then run it by the doctor before trying it. Jeff and the doctor are usually onboard with dietary things and the doctor is very inclusive of our thoughts in the whole treatment. I know Jeff has some supplemental non prescription meds he wants to try for tinnitus and what looks like a terrible discoloration and disintegration of his toenails and fingernails which looks to be a fungus. We don’t know if that is inflammation worsened by or related to CIDP or not because he had it long before he was diagnosed but it is getting worse. For people who are getting a “bad diagnosis” I can only say CIDP is so rare most doctors have never heard of it. It would be best if possible to do a search for a doctor with experience in treating it and probably a highly rated neurology center or a local or nearby teaching and research university neurological center would be a place to start. I google everything and could have found our doctor that way however we in fact found him because Jeff had two surgeries – one for hip pain and one for leg weakness. A top orthopedic sports medicine surgeon replaced that hip which he diagnosed was congenitally destined for eventual failure. The surgery was successful. Less than a year later Jeff saw a neurosurgeon after some back and leg pain and a lot of weakness resulted in falling and extreme difficulty walking. He also experienced some unusual feeling in his feet. An MRI showed the nerves in his spine were being encroached upon by stenosis and he was referred to a neurosurgeon who did surgery to free up the nerves. The surgeon told me after surgery that the nerves were greatly more impinged than the MRI’s showed and it took a long time to free them and get them ready to begin to regenerate and heal. As it turned out, he never healed and after several weeks the neurosurgeon was so alarmed by the weakness in his legs that he made a personal call to the head of the Neurology Dept. at UF and Jeff was seen immediately. Someone must have had some inkling what was wrong because they arranged for him to see the Dr. he has now. Dr.Wymer’s background was in Syracuse NY in the front lines for clinical treatment of ALS patients. He did a lot of research and was eventually invited to the University of Florida Shands Medical Center which is in the process of building a heavily funded medical research and treatment program to address all medicine at a very high level. Dr. Wymer’s job at Shands Neurology is to evaluate patients who present with unusual and or rare neurological symptoms and determine a diagnosis and treatment plan for them. He had by then moved from strictly ALS patients to some CIDP patients. It was through that serendipity of events that Jeff ended up seeing and being almost immediately diagnosed with CIDP by Dr. Wymer. I will say the diagnosis was not 100 percent nailed down until recently. The spinal fluid showed all the correct markers for it but some of them were also similar to MMN and ALS. Jeff’s lack of response to IVIg kept the CIDP diagnosis but with the others still not eliminated. The eventual positive response to IVIg treatments over 4 months boosted by the addition of prednisone was the thing that led Dr. Wymer to feel very confident with the CIDP diagnosis. Therefore, if a Dr. like that in a place like UF Shands takes a while to arrive at a more certain diagnosis then I don’t find it unusual that other doctor’s are still trying to find enough evidence in the science and the response to treatment to narrow down exactly what of several potential neurological possibilities might be in play at any given time. As Dr. Wymer says there is the science of it (finding out which disease it is) and the art of it (the treatment options and how and when they are applied to achieve patient improvement). We all know by now there is no cure, just treatment. And we know it is chronic, which means it will come back. That is the challenge for the patient and the doctor together.I think the doctor you see is critically important and correlates highly to your chances of getting more successful treatment results. Nothing is for sure with CIDP and everyone is different so you really need people on your team who can read the tea leaves and trust each other to go in a good directions and know when to shift gears if it isn’t working. These forums are so valuable to me in doing my part on Jeff’s team. If anyone does anything that seems to work we all want to know about it. I look forward to the results of Chicago’s efforts to restart his immune system by whatever means his doctor gives him the green light to do and wish you well!June 7, 2019 at 11:04 pm
I posted a month or so ago about my friend’s MMN diagnosis. His CIDP had not responded at all in 4 months to IVIG and the diagnosis now 5 months ago had therefore not ruled out MMN or ALS. Finally the introduction of presdisone to his most recent IVIG treatment began to show a slight result. It is also interesting to note the IVIG brand he was taking became unavailable and Privigen was substituted in its place. Apparently those changes and maybe length of treatment time created the perfect conditions for improvement. Within 4 weeks from switching to Privigen and taking 60-80 mg of prednisone daily, he has gone from almost complete weakness/paralysis in both legs and both arms to mobility increasing daily. The doctor’s appointment at UF Shands Medical Center in Gainesville FL. resulted in a very happy doctor and patient as the doctor finally felt able to confirm CIDP without MMN or ALS any longer on the list of outside chances. While I never thought I would be happy to hear CIDP as the final diagnosis, things become relative after a while and so we are good with it probably because it narrows the field of focus and more clearly defines the options. Central to the acceptance of CIDP for us is seeing recent improvement after months of treatment with zero change in fact there had been only marked and ongoing deterioration.
The prednisone creates sleeplessness which is a stress trigger and very high bursts of frequent eating binges. No weight gain has occurred but for him instead weight loss is an issue. He has lost 25 lbs. and all muscles have atrophied in less than 6 months.There is possibly an increased level of aggravation that has come with the prednisone but maybe it is just frustration. The weakness subsides very slighting but strength is coming slowly and steadily up to a point. He has parked the wheelchair, uses the walker, started driving this week, but is still feeling a lot of weakness with strength very slow to recover. He exercises every day and is working from home. He plans to live the best life he can and continue fighting for every inch of recovery he can get. We understand the disease is chronic and will return. We know it is unknown how long a remission we can expect to have or to what extent he can recover what he has lost in strength in his limbs before it returns. We know we will fight the IVIG shortage if it is real. One thing I know for sure is that the voices of the people in these forums have been a life line of information helping us find our way around each and every obstacle. I believe his neurologist at Shands is the right guy because he diagnosed quickly and began immediate treatment which he oversees carefully using his many years of experience particularly with ALS treatment. His comment at the last appointment upon seeing the response finally come was this “now that we know the science of it it’s time to do the art of it”. I likened it to a race car – I told Jeff he is the Ferrari and Dr. Wymer is the tuner. Jeff is driving the car, or trying to, but without a good tuner it isn’t going to run well enough to make the race the best it can be. Having a doctor that you can have a relationship like that with has kept us in the race for sure and we hope to stay in it for along time to come along with the ups and downs. Thank you to those who suffer yet take the time to help those who are undiagnosed, mis-diagnosed, waiting for a response to the IVIg and who are relapsing. We will stay in touch on this site over the long haul in order to do our part to give everyone else the help and support we have received and will continue to need for the rest of Jeff’s life.May 4, 2019 at 3:11 pm
ROZ1 My boyfriend has MMN type of CIPD. Email me if you want to know what I’ve found. I’m on this site as a caretaker as Florida Jan.