CIDP Progess and retrosepction (Long)
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February 9, 2017 at 1:19 pm
Reading this forum, I realize those with GBS and CIDP have had much harder road to travel than I. My prayers are with them.
When did it start?
–I can’t put a date on it, exactly. June and July I started to get winded doing my job. Thought it was just my asthma and the doctor gave me some medicine. I also had random pains. A finger on my right hand and another on my left hand felt like I had pulled a tendon. Also, my a big toe would hurt and then the other one would. I thought it was just my shoes.–then I started to get fatigued in late July. By mid August, I had very, very mild numbness start in both hands. With a bad back, my chiropractor just thought it was pinched nerve. A couple weeks later, my feet started to hurt and or get numb. At that point, the chiropractor said go see a doctor, something “bigger” was wrong.
–Early Septemberish. Blood tests showed a cratered B-12 level. Symptoms of B-12 of course include numbness in both hands and feet. Diagnosis was to build the B-12 up and come back in month.
–Mid October, B-12 levels now normal, but the numbness is getting slightly, but progressively worse. No real motor control deficits as of yet.
–Early November, symptoms get worse. At the end of work, my feet hurt so bad, it hurts to walk to the car. Go back to my GP and he sends me to a neurologist. I get in right before Thanksgiving. First blood tests. Show nothing. Then a week later, a spinal tap which indicated CIDP and I’m started on 60mg of Prednisone.
–During December, symptoms get worse and Prednisone seems not to work. Go to see the neurologist Jan 2 and collapse in his examination room as my legs give out. Luckily, the hospital is only 50 yard away. : )
–Symptons at this point included lose of motor control in my feet. My right ankle buckled with any weight applied. I lost ability to taste. I lost feeling in my torso, arms, hands, feet, and legs. Of course I lost libido as well. I also had shortness of breath and extreme fatigue. I could barely walk and collapsed several times and couldn’t even pull myself when I fell.
–Next day I start the 5 day regime of IVIg. I respond immediately and within days I can work with again with extreme effort.
January-slow recovery
–The IVIg definitely jump started my recovery. I also remained on Prednisone now at 40mg a day. My first two weeks I had to use a cane. I couldn’t walk down steps. My feet still feet semi-paralyzed and my hand felt numb and on fire at the same time.–After that, I started to get better, incrementally, day by day. The numbness in my hands and feet started to recede towards the toes and fingertips every day. Taste returned, shortness of breath has gotten better, and feeling has returned to my torso.
Right now–going back to work next week
–as of today, the paralyzed/pain feeling in my feet has receded to the toe line. It still affects my gait and balance, but I don’t need a cane anymore. Walking down steps is still a challenge, but walking up them is 90% back to normal. The same goes for my hands. The pain has been pushed to the finger tips.
I assume it is my nerves recovering from the trauma. Also, my right ankle, which turned numerous times during early January, has finally healed and has helped my balance and gate immensely during the last week.
Physical therapy–and Prednisone
–Just a couple thoughts on physical therapy. My therapists are great people, but I think we pushed too hard for a couple of weeks and overtaxed my muscles in legs and made me feel as I was going backwards. They recognized this and we cut back on repetitions. Once we did that, I started to feel instantly much better. I also try to walk a quarter mile a day.
–My advice is to exercise in moderation. Overtaxing muscles for me, made me feel as if the CIDP symptoms were getting worse.
–Presnisone is a two edge sword. I think one the IVIG kicked in, it allowed the steroids to keep the immune system in check. Of course, steroids, long term, have side effects. I feel like I took 30 caffeine pills all at once : ) I’ve gained weight, especially in the stomach and my face has turned round and, well fat! It also causes sleep issues, but the last week that has gotten somewhat better.
–Gabepentin- now that I am recovering, Gabepentin seems to finally offer some level of relief. Before it seemed useless.
I would love for the remaining neuropthy to heal, but it I’m happy right now that I’ve recovered this far.
Hopefully this offers some hope or insight for others.
Best wishes to all my fellow CIDP suffers.
Bryan -
February 9, 2017 at 6:29 pm
Bryan, do you mind if I share your experience on my blog for more exposure? If you have any photos of yourself before, during, and after that you can send, that’d be great too! You can send it to cidp.gbssurvivors@gmail.com if interested. My blog is jamiegbs.blogspot.com
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February 9, 2017 at 7:57 pm
I don’t have any photos to share, but you are welcome to share my post and give me link to your blog when posted. You can email me at ncc1701@ “at” fuse.net
Bryan
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February 11, 2017 at 3:00 am
May I ask your age?
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February 11, 2017 at 12:51 pm
51, male, white
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February 12, 2017 at 3:19 pm
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February 12, 2017 at 7:53 pm
Wow, just read your blog. What a story and ordeal you went through. How are you doing now?
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October 1, 2017 at 5:39 pm
Your symptoms sound so similar to what I’ve currently been going through; how my ankles give out, want to turn in and kill me if I have to walk too much. How my knees feel like they will buckle due to the leg weakness, so I have to keep leg braces on them.
Seeing a second neurologist in a ouple weeks and hope eventually I will get a diagnosis and hopefully the proper treatment.
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October 1, 2017 at 7:18 pm
Hi Jcheart,
How long have you had your symptoms?
As a follow up to this post….
By March, I felt like I was regressing, but my Neurologist didn’t want to respond. So I went to get a second opinion. He was rather upset that my original doctor didn’t continue the IVIg. He said it was obvious that the prednisone wasn’t arresting the CIDP.
In other words, he said my neurologist allowed me to relapse and cause more nerve damage.
So I went with the new neurologist and now get IVIg treatments every week.
I’ve regained a lot of energy, returned to work, and even played 9 holes a week for the last month.
But, I still have some tingling/numbness in my hands (especially when stressed) and my feet burn and from the balls of my feet forward, it still feels numb and a stiff. Additionally, at the end of the day, I am exhausted.
I still have a ways to go to say reach 92% of my previous CIDP abilities.
My suggestion is to see if you can get into the neurologist sooner.
Good luck and if you have any questions, feel free to ask.
Bryan
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October 2, 2017 at 1:27 am
So I went with the new neurologist and now get IVIg treatments every week.
If you dont mind me asking, how much do you get weekly? Im at 2 weeks but Dr seems hesitant to go more frequently or higher doses.
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October 2, 2017 at 6:16 pm
Cer100,
That should have read every other week. I get 1000ml/100g per treatment right now. So that’s 2000ml per month….
Bryan
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October 3, 2017 at 2:52 pm
Thanks Bryan. Wish my 1.5 gm/kg @2 weeks would get me back to somewhat normal strength and walking better again but its not happening, nor is it lasting 2 weeks like it once was. Playing golf again is a distant memory. Awaiting next neuro visit for an updated plan.
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October 23, 2017 at 5:24 pm
Hello everyone. I am reaching out to fellow CIDP sufferers because of my condition and curiosity. I have been off ivig for about 3 years now. I took treatments every three weeks for about 3 years prior to that. I believe I had CIDP about 4 years prior to it flaring up to a point that I lost all my strength and sought help. Anyway, I currently suffer from a lot of fatigue even though I have been off treatment for a few years. I have to sleep at least 10 hours per day with a lot more than that on the weekends. If I am on my feet for too long, I too have a lot of pain and find it difficult to walk, or should I say, want to walk. I have somewhat learned to deal with my semi-handicap condition but the guilt and emasculation of this disease is quite cumbersome for me to get over. I spent my entire life as an outdoorsman, a home builder and many other things that required physical activity. Now, I am a slug who has to sit and sleep a lot. I guess I don’t really see that my condition will continue to improve but still very hopeful. Have any of you continued to suffer with the damage that was caused when the disease was active? Is there hope for more improvement? Doctors won’t seem to tell me anything.
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October 23, 2017 at 7:11 pm
Paulg,
While I’m still under treatment, fatigue is still an issue. I work six days a week and I’m on feet all day long. By the end of the day, my feet are killing me. Gabepentin keeps the pain away while at work, but by quitting time, I limp out to my car.
After work, I’m pretty much done for the day, unless friends drag me out. On my off day, when I’m not getting IVIg every other week, I sleep late and lounge around. I need to rest to help make it through the week.
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November 3, 2017 at 9:22 pm
Bryan F / CER100 / Paul G / Anyone Please Help Me
I am in the process of starting the IVig process. The initial load is five contiguous days, then every three weeks one infusion. Can anyone tell me what to expect right after the initial load. How should I feel? Same, better, temporarily worse? Other? I was told by my Neurologist and Infusion Service that the decision process to proceed for each phase is entirely mine. I want to be sure I have as much knowledge as I can gather.
Retired, five years on Prednisone with flare ups (pain), still can walk, balance on each foot. have feelings in feet, never fell, work on small home projects. Recent flare up not responding as well as in the past. Decided to try IVig.My Eternal Gratitude
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November 3, 2017 at 9:47 pm
IVIg is an odd medicine for me. In the scheme of things, it has helped me immensely.
But individual treatments vary. Some have given huge boosts. Some minor and maybe 2 did nothing st all.
Sometimes it takes a week for it to kick in and other treatments begin to help me the next day.
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November 4, 2017 at 9:47 am
Thank you Bryan.
I believe your participation in the Forum adds great value. This has been a tough road for me starting at 71 years old ! Now at 76. I feel that my age vs. younger patients makes things more of a challenge. The psychological impact was devastating. The Forum has given me some light.
To the point. I received 5 days of Previgin infusion without incident.
But since the last infusion on 10/27 I have felt worse than I ever have and it is not improving….so far. CIDP symptoms are exacerbated. Most of all is the intense pain requiring constant painkiller. My Neuro and Infusion Nurse are puzzled. I am due for infusion every three weeks. Next shipment is the 7th. I am told it is my decision to continue or seek other courses of action.I do not want to discourage other newly diagnosed patients. Everyone is different and there are many good outcomes. I seem to be an exception.
Anyone else reading this is more than welcome to provide input.
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November 4, 2017 at 2:25 pm
Acceptance,
Not sure if I responded to you or someone else in another thread, but the results of IVIg can take up to a week or more to feel. Sometimes it is a cumulative effect of several treatments and sometimes a single treatment will give you a great big boost.
My two cents is to settle down for the long haul and allow the IVIg to do its job.
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November 5, 2017 at 3:04 pm
Acceptance76
I too had the initial infusions and the every three weeks for 3 years as well as infusions of prednisone. It is a long, tough experience. The mental struggle with all of it is equally as challenging. After 7 years I am ok. I have strength but no endurance. I am about 70% thru the acceptance stage. Happiness is creeping back into my life and will continue to do so as I learn to accept what has happened to me. I tell you this because I want you to know the sooner you can accept this crap that has been bestowed upon you, the sooner you will begin to enjoy your life in different ways possibly, than you were used to. Don’t give up and hopefully you have the love and support of family and people around you to lean on. Take care and ask anything you need to ask. I am here to share whatever may help you. -
November 5, 2017 at 4:27 pm
Paul G. Thank you so much for your response. I am overwhelmed by all of the responses and did not realize how deep these posts go when I came on board. Getting familiar with the navigation today opened my eyes to so much more. My wife was next to me when I read your post out loud. It almost described me to a T. I have driven her crazy over these years. Several Particpants have given me feedback and it has lifted my spirits today. I was in a downward spiral because I thought that my last resort was actually poisoning me. Ironically today is the first day after the first 5 infusions I actually feel a little better. It was really scary. I sent up a flare to my Visiting Nurse and Neurologist that I did not think I should have gotten worse after the first five infusions. They offered some suggestions which I followed such as Hydrating and Calming Down (prescribed Valium for a few days). Also to take Asprin with my pain killer to help it process. Also my emotional ups and downs were not helping to even out the body processing all this fluid.
Thanks to all that have contacted me including yourself. I will reach out to you as I travel this journey. I can only hope that I can offer aid to others afflicted. It can be a very lonely and frightening disease. Bill F
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