CIDP Going for secon opinion

It is possible to recover from CIDP, but in the meantime, you need treatment and the earlier the better. A week and a half is a long time to wait if you are deteriorating daily. You may need someone to help you get around until you are hospitalized, if it comes to that.

I was in a wheelchair before I could get in to see a neurologist. He put me in hospital the same day. Eventually, I was completely paralyzed below the neck. Today I am 95% recovered and walk without assistive devices. Try to stay positive!

Assuming its CIDP, all I can say there is hope. In early January of this year, I collapsed in my doctor’s office. I think that was needed to convince him that I WASN”T GETTING BETTER 😉

That evening I was admitted and couldn’t stand. A week’s worth of IVIg and I started to regain strength and could walk again. It was a long process, and involved getting a new doctor, but almost 10 months later, I’m working full time, and playing 9 holes of golf a week.

I still have some weakness and pain and there are definitely ups and downs, but things will get better with treatment, over time.

Best of luck. Keep us informed and feel free to ask more questions.

It is possible to recover from CIDP, but in the meantime, you need treatment and the earlier the better. A week and a half is a long time to wait if you are deteriorating daily.

Assuming its CIDP, all I can say there is hope.

These…but getting right Dr and right treatment seems to be key.

There is much not known about this disease and apparently a lot of trial and error unfortunately.

Im worse than when I started, but still working on it and staying as positive as I can

Just to expand upon my treatment. Around December 1st, 2016, Dr. “One” began treating me with 80mg of Prednisone every day. Two weeks in, I called him and said I’m worried, I’m getting progressively worse. He said, give the Prednisone a chance to work.

By Christmas I was using a cane and by New Year’s I could barely walk and I had trouble holding things in my hands due to numbness and loss of motor control. I called him January 3rd and said I was in awful shape and need to see him. Got in to see him that day, collapsed in his office and was sent off to the hospital for a week’s worth of IVIg.

Like I said, I started to feel better almost immediately. I stayed off work until February 14. During that time, Dr. “One” said we would continue with 80mg of Prednisone per day and that the push from the week’s worth of IVIg was all I needed.

But by the end of February I felt a small decline and by mid-March I knew something was wrong again. Finally got into see Dr “One” by the end of March. I was using a cane again, had numbness in my hands as well and felt extremely weak.

He gave me another week’s round of IVIg beginning April 1st. But the staff gave me the infusions so quickly-2 hours each day-that I felt no benefit after this treatment.

It was at this point, I got a second opinion. Dr.”Two” looked at my treatment from Dr. “One” and said, point blank, this guy isn’t doing you any favors.

It is obvious that Prednisone doesn’t help you. And did you know that IVIg only stays in your system for 30 to 40 days. So he let you relapse by not continuing a regimen of IVIg. Additionally, your April infusions were delivered too fast and that’s probably the reason you felt no benefit from them.

In other words, I went 3 months under my old doctor without an effective treatment and then, when he does give me the IVIg, its given to me incorrectly.

Dr. “Two” started me on monthly treatments of IVIg. I saw a huge boost in May and regained much of my upper body strength. Since then, with plenty of ups and downs, improvement has been incremental. I’m definitely going in the right direction, but the progress is very slow. But with this disease, progress is progress.

If you go the IVIg route, make sure to have the serum delivered slowly. It makes all the difference in the world.

Then, remember, you will be easily fatigued. When you get to the point you are tired, rest or your atrophied muscles will make you pay for days. Also, I’ve found that stress can make your symptoms worse. I’ve about 90% mastered the stress at work, but on the days I let it get to me, I can feel numbness creep back into hands, arms and legs.

If you go the IVIg route, make sure to have the serum delivered slowly. It makes all the difference in the world.

Are you referring to side effects or effectiveness?

The effectiveness.

If you go the IVIg route, make sure to have the serum delivered slowly. It makes all the difference in the world.

Are you referring to side effects or effectiveness?

The effectiveness.

First I’ve heard of that. Any references discussing? As I have tolerated well, Ive had them bump up my infusion rates

cer100, it is just personal experience. When the IVIg has been “rushed” I experience little to no benefit. When the IVIg is slow administered, I feel the effects within in a week.

Thanks for the various experiences with IVig. I have been surviving on Prednisone, Adderall, and Hydrocodone. for the past 4 years. Quality of life has been acceptable but not as good as if I would have espected. In the last month my status has gone down hill rapidly. Pain is almost full time regardless of being dormant or active. Exacerbated by stress and anxiety. Contacted my Neurologist for an urgent appointment which will be next Monday. He is on vacation this week. In the interim he advised that I increase from 30mg Prednisone every other day to 60mg every day. He wants to recommend IVig as a next course of treatment. I have heard of Subcutaneous IVig becominng an inexpensive alternative and much more convenient.

Good luck Acceptance76. Let us know how things progress.

I also started with Prednisone, 60mg a day, but it never seemed to help and I ended up with IVIg as my main treatment. Right now I’m on 20 mg a day and hoping my next visit will see the dosage reduced even more.

I’ve been on varying dosage of prednisone in conjunction with IG. Even at 60+ I dont feel there is much improvement. And as little as 20, I start getting all of these nasty, nasty side effects.

Good luck

Bryan F and cer100 Thank you for your support. This is good information for me to take to my Neuro on Monday. I was a desparate man before I found this site and it has been a gift. Bless You.