Reply To: CIDP Going for secon opinion

September 25, 2017 at 6:19 pm

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.