Rhoda cohen CIDP

I have not yet gotten my first infusion. I am waiting for Medicare approval. Have noticed both legs are getting worse and my arm have lost strength . I have a positive outlook. If the treatments can stop it from getting worse, that will help a lot. I am tired most of the time and have so much trouble walking that I've begun to want to stay in... Will I have more motivation during and after the infusion??? I am not sure how to send this message..Rhoda

Hi Rhoda
When were you diagnosed?

Whatever the treatment, when it kicks in, yes you may get a boost of motivation. Some of that will be physical especially if you can actually sense that you aren’t getting weaker . Depending on how bad your weakness had gotten before your diagnosis and treatment(s), you’ll also get a real lift as things slowly improve.

But if you’re like me, much of your lift and motivation will be mental. And that again depends on how bad you had gotten. I was totally paralyzed from the neck down except for being able to flex my left wrist. After finally getting a definite diagnosis of CIDP instead of my previous fatal mis-diagnoses, the end of a 7 month search for finding out what was wrong with me alone provided a huge mental boost.
Then as the effects of treatment began to kick in ( in my case plasma exchange), I got both a huge mental and physical boost out of seeing atrophied muscles begin to twitch on command.
Keep the positive attitude…it’s very important!

Don't sit around and wait. I did that and before you know it... mine went from CIDP to Gillian Barre' (sp?) and I became paralyzed. I was waiting for my insurance, as well. I didn't understand what CIDP was, and it took months to be dx'd as all of my tests were coming back excellent. That is, until they finally did an EMG. I wish so badly someone could have told me to go into the ER immediately. I had been to several before knowing the dx and they would send me home as they didn't know what to do for me. But knowing the dx, was a different story. They knew what I needed. However, by the time I got there I was paralyzed from my chest down. My arms were paralyzed, as well. I don't want to frighten you... just alert you. On the positive side... I went from being paralyzed and bedridden, and hospitalized for a month, to home, where my husband and children cared for me- put me on and off the toilet, in and out of bed, bathed me, etc... to being able to transfer myself, toilet myself, my own self care. I went to Mayo Clinic, where they were much more aggressive with my treatments. When I got home... my care continued... however, they told me I would never walk again, due to the death of too many nerves. I sought out more opinions at other major hospitals... and they all agreed with Mayo Clinic. I had a good outlook. I cried, yes... many times in between... but refused to except their findings. I pushed forward with everything I had inside of my human body, mind, soul and spirit... I laughed a lot... I never asked, "Why me?" I just wondered, why? What caused this? It was labeled as unknown etiology. The only thing we have found in my medical records was a Tetanus shot I had a reaction to. I began having problems breathing and it was all documented as I made calls to the doctor's office. We originally thought it was a flu shot, but they were unable to find any record of it given. Though many people didn't seem to care what caused theirs... it haunted me... and still does. However- As time went on...with treatment, and love and support from my family... I slowly began progressing. Finally, through physical therapy, I was able to stand... With belts around my waist, and two attendents, supporting me, I took one step, then two... three, then four. Needless to say, I am walking, again. I do have some residuals, but I am walking. I have drop foot, and have to wear AFO's. I can now walk about a half mile. I was dx in 2009. It is a long road... very long, and winding, road. Sometimes it is also a very lonely road... Sorry that I rambled on, but I wanted you to see the importance of you getting treatment now as opposed to waiting. I am a retired nurse. I am angry at myself for letting it all drag out... the dx... the treatment. I should have known better. You sound like you have what it takes to live a good, productive life, despite CIDP... Do it!

Rhoda,

I've been on IVIG since April 2013. At first it was five days a month; in June it was reduced to three days a month. I read where someone called this treatment "liquid gold." For me indeed it is! When I first started the five day treatment I was completely paralyzed. I have to say that my diagnosis of CIDP came pretty quickly as my neurologist referred me to a specialist who knew exactly what to do. He suggested more aggressive treatments with the IVIG. By that time I was in a nursing facility because I do not have family in the area to care for me. And that's another story… Today I am at home in my apartment with home support through Medicaid. I am retired and also on Medicare and they have paid for treatments. Perhaps it's that when I started on Medicare, I had already been receiving coverage from a private insurance company that had denied aggressive treatment. They shall remain unnamed, but to this day I tell everyone I know to pass them by.... Medicare has been a life saver...literally!. One of the things my doctor said is that a positive attitude is a really important attitude. All of the doctors and specialists around me keep saying that I am the one who made myself get better — that it was more than the IVIG. They said it was my determination as much as the treatment. I believe that. There's no telling what the future holds, I could have another decline because that's the way this disease works sometimes. But staying positive and knowing that you can make it is so important. An occupational therapist in a nursing facility once told me I would never be able to cook the way I used to, which is fairly elaborate. I am cooking wonderful meals--making soups,baking--of course I use tools like blenders and processors and juicers--but the point is I'm doing it. I have to limit cooking to once or twice a day because of fatigue, but I can do it. I also added some changes to my diet--juicing, raw foods, etc. Right now I'm strong and healing my mind and body. I also see a therapist (as in counseling). I cannot stress how valuable this is.I still have neuropathy in my feet and legs and the pain with it. But I am beginning to use a walker and I am so very, very grateful. It's a long and winding road but with a light at the end of the tunnel. Stay positive!

From the time I complained about week legs, numbness in hands and feet and muscle wasting by my thumbs and going to a neurologist and the time I started infusions I had gone downhill considerably. I have been on IVIG now for 2 years and with luck have gotten better. I would have been much, much better had the infusions started right away. So do all you can to speed up your process as each day of progression will cost you months of recovery time. That is if you are lucky enough to experience recovery. I was only told they could arrest progression and couldn't promise anything else. From the time of diagnosis to my first infusion was nearly 2 months. In those 2 months, I had to start using a cane, I started falling down on unsteady ground, my legs wouldn't work right and I felt close to the need of a wheelchair. I wish you luck in getting your treatment started, very important.

If the infusion works (IgG) you will probably know it after 4-5 days... if you have the amount of IgG necessary. The new infused IgG will supplant your defective IgG and eventually allow remylinazation of your myelin. If you don't react positively then chances are the IgG is not for you, but quantity is the determinate. I get 240 grams each month in two bi-monthly 120 gram increments.

Motivation is a higher brain function translated to your muscles from upper neuron to lower neurons. CIDP is a lower neuron disease. Lower neurons start at cervical spine #1 and also include cranial nerves, anatomic nerves, entrenic nerves, etc.

CIDP... chronic, what more can I say? Read up in the medical literature so you can tell you neuro what afflicts you, and you can tell him or her about your muscle/nerve problems with confidence. It is a long road to recovery, but recovery can be amazing, almost miraculous at times.

Hint- To beat fatigue, I exercise. It works almost every time, but it must be concentrate, hard work and directed PT exercises.

Good luck!

Don’t expect miracles even though they do occur. They are the exception; however, improvement over time is the more common effect of IVIG infusion. Improvement may be gradual with motor neurons responding more often with increase in strength, distally at first, then the trunk. DON’t lose hope but remain always hopefully. Push yourself but only if the strength allows . LISTEN TO YOUR BODY AND YOUR GUT. THE dress. Are smart but you can be too. You have all day while you’re “in” to learn all you can about CIDP AND ALL THE FORM OF TREATMENT BESIDES IVIG. good luck, Geeps

Hi Rhoda,

Everyone responds differently, but for me, IVIG was like a miracle. I know not everyone has that good of a response, but I would expect at least something positive.

Do you have a formal diagnosis of CIDP? I don't know much about insurance, but my impression was that if you have a confirmed diagnosis, they automatically cover the IVIG. I do know that when I went on Medicare they wrote to my doctor and asked him about my case. They also wrote to me and asked my what my experience was, how I was diagnosed, what my treatments were, etc. I told them how well the IVIG had worked for me up to that time. After that I had no trouble getting it approved.

Bill



Uncle Bill said:

Hi Rhoda,

Everyone responds differently, but for me, IVIG was like a miracle. I know not everyone has that good of a response, but I would expect at least something positive.

Do you have a formal diagnosis of CIDP? I don't know much about insurance, but my impression was that if you have a confirmed diagnosis, they automatically cover the IVIG. I do know that when I went on Medicare they wrote to my doctor and asked him about my case. They also wrote to me and asked my what my experience was, how I was diagnosed, what my treatments were, etc. I told them how well the IVIG had worked for me up to that time. After that I had no trouble getting it approved.

Bill

Get a notebook and keep a diary. It helps in discussing symptoms with the doctor. Do some research so you can ask as many intelligent questions and get some specific details from him/her. Try to get some exercise. I count a trip to the grocery store as a good walk gone bad. Just do things at your own pace.

Mike

It sounds as though several people have a positive experience with Medicare, that should eliminate some stress. I have found when I experience anxiety the symptoms of my cidp go out of control and the pain skyrockets. I also see a counselor who helps me stay grounded mentally and my pt/yoga instructor helps with balance, strengthening, and flexibility. I was amazed at how quickly I lost muscle mass and the ability to stretch, so my word of advice is to give time to yourself. Nothing is as important as your well being. Sometimes it is hard going out, I don't walk the same, I call it wobbly walking, but I am so grateful that I can still get around. There are so many beautiful things to experience outside it would be a shame to hide away indoors. Peace Nancy