Progress so far towards recovery
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June 27, 2017 at 9:45 pm
I’ve been on monthly infusions of IVIg since May 1st.
Mid May I felt the biggest boost towards recovery. My upper body strength returned to almost pre-CIDP levels and it has remained there.
The numbness in my arms and fingers has slowly gotten better, but when I’m tired, it does return until I rest up for a day.
The one area that has stayed static over the last two months are my calf muscles and feet.
While my upper body strength has returned, my lower legs are still weak. Cutting grass or walking up a hill, really exposes how weak these muscles are.
Additionally, from the balls of my feet forward to my toes are still very stiff. If I exert myself too much or I’m tired, it gets harder to move the muscles in this area. Also, as the day wears on, my both feet tend to hurt, with a combination of a burning feeling and pain.
Considering back at the end of April, I was using a cane, I’ve made great progress.
I can walk normally until I start to tire out.
I play 9 holes of golf each week. I don’t hit it as far as I used to, but I’m playing. My lack of strength, probably in my legs, makes it hard to hit side hill lies as balance issues arise. But then again, I’m playing.
I can trim the grass with the push mower. I’m tired afterwards, mostly once again I think due to the lack of strength in my legs.
Finally work is easier than it was. With my upper body strength returned, lifting is almost back to normal. My only problem is that my feet start to burn and hurt about 4 hours in.
Looking back over two months, there definitely has been progress towards healing, but one thing I’ve noticed with CIDP is that recovery is not a straight line. There are good days and bad days and days where the disease wins out due to fatigue, but overall, two steps forward and one step back still brings one closer better days.
Right now, I’d say I’m at 75% of my former self. I’d love to shake the numbness in my fingers, which I had by late February before my relapse in March, and I’d love to regain strength in my calf muscles. Despite all the walking I do, it still seems they lack mass and tone. Which seems very strange to me. Any reason why?
With that said, I’m due for another session of infusions of IVIg on July 3 and 5th. Hopefully things still get gradually better.
I’d love to hear how your recovery has progressed.
Bryan
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July 1, 2017 at 5:58 pm
Hi Bryan, Jeff here in Houston. Always interested in how you are doing as we were diagnosed around the same time. Sounds like some positive things for you are happening with your current treatment. I see my neurologist in early July for my 6 month elvauation. I have been doing ok to pretty good. Same as you my calfs and random numbness in feet are the main issues. I have experienced some increased inflammation in the thighs recently but nothing too bad. I have had luck with taking Lyrica so my nerve pain in my lower legs is pretty subdued. I take 3 pills a day (75 mgs) and have absolutely no side effects. I am still working everyday and sleeping good. I have had ivig infusions every 2 weeks since being diagnosed (gammaked). Sometimes I get a boost after the 3 hour infusion but most of the time I do not notice much difference. So, not sure what that means and what the neuro will say. I have not looked into physical therapy yet due to the time commitment and cost, but I am sure it would benefit my muscles. Good days and not so good is my case as well. My balance is still good but will be curious to see how I do with the neuros strength tests. I have read there are 3 kinds of cidp and I think I have the “slow progressive” version. I had not had any upper limb issues for months but now have some minor inflammation in my forearms and some numbness in finger tips but comes and goes quickly. Will that progress?, who knows. I have gotten used to my condition and accepted that it is what it is but compared to others, I am doing pretty good so far. I have also read that the disease is most active from 1-3 years. Have you read that? And that after the active time period of the disease you then know what you are left to deal with and that relapses are possible. I always say that there is no expected course for everyone as cidp is so individual but I still want to know what others are experiencing and after if I can clean some expectation of what the future holds for me. Keep posting your updates and hope that you find something other than the cymbalta that helps. I am very lucky with the Lyrica.
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July 1, 2017 at 7:26 pm
Hi Jeff. Same here, I like to compare notes to see how I stand in terms of treatment and progression of the disease.
What I’ve read is that your nerves heal up to 3 years out. So that at that point, you will know where you stand in terms of permanent damage.
The weakness in my calves, the continued numbness in my forearms and fingers, and the numbness and pain in my feet are my issue areas.
During my 1st recovery from January through February, the numbness in my hands had completely healed.
But, since my relapse in mid March, they haven’t healed.
On the other hand, during this recovery, I definitely feel stronger from the waist up and as a whole, I have more energy and stamina.
I get 2 days of IVIg treatments next week. Curious to see what effects it has. It usually takes me 10 days out for it to kick in.
As for Lyrica, my insurance won’t cover it. I can’t complain as I’ve reached the point this year where my co-pay is $0.00 on my IVIg treatments since I’ve maxed out on my out of pocket expenses.
Thank God for my job and insurance.
The most annoying thing about CIDP is the day to variance. Good days, bad days. The pain often is never the same. Some days you wonder if you are relapsing and the very next might well be the best you’ve felt in ages.
Good luck Jeff and keep updating your condition.
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August 15, 2017 at 6:42 pm
Relapse or Recovery; GBS or CIDP:
I was diagnosed with GBS April 1, 2017 after being hit March 13th. I was diagnosed via symptoms and EMG analysis. I received 5 days of IVIG around April 3rd. That was my only IVIG treatment. There was no apparent change in my situation right away. Since May 1st I have been getting stronger in my upper arms and my legs. I also had double vision late and that has recovered. As I have gotten stronger, I seem to be more aware of a band of tightness around my upper arms, both arms. It is worse late in the day, better after sleeping. It seems to get worse, or else I am more sensitive to it as I get better. At times I fear I am relapsing. I am still very numb in my upper arms and my knees. I told my neurologist I wanted another IVIG treatment. He gave me another EMG instead saying my nerves were healing and were much better. My ankle reflexes and wrist reflexes are better. I still have no reflex at my knees. He said I did not need an IVIG treatment. I just dont know. I am wondering if I should get another opinion. My neurologist seems to be very knowledgeable about GBS. He told me he has two other patients currently……Any ideas? Thanks…. -
August 15, 2017 at 7:06 pm
I am wondering if I should get another opinion. My neurologist seems to be very knowledgeable about GBS. He told me he has two other patients currently
A second opinion is a good idea IMO for a rare and complex condition. It certainly isnt going to hurt and may provide a different perspective on some things. Before selecting, ask the office some questions like experience with your condition and how many current patients they have…the more the better.
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