Any experience with centers for excellence?
AnonymousDecember 6, 2012 at 1:55 am
I was diagnosed with CIDP 6 months ago and am currently getting plasma pheresis once every 2 weeks. I am working and walking but am tired all of the time. I can’t walk too far and am anxious to get as much of my former health back as possible. I am thinking about going to one of the centers for excellence to see if anything more can be done. Has anyone had experience with any of the centers? IVIG didn’t work for me and I was wondering if there were any other treatment options that may replace or add to what I am now getting. It sure would be nice not to be tired all of the time! I am a hard worker in therapy and the therapists are amazed at how far I have come (I was paralyzed in my arms and legs 3 months ago). Does anybody think going to a center of excellence is a good idea or should I be thankful for the progress I have made so far and just count my blessings?
AnonymousDecember 6, 2012 at 5:50 am
Good for you! I think a second opinion is always a good idea…especially since IVIG didn’t work for you. The centers for excellence are specifically trained to treat our rare condition/conditions. Even if all you get is a confirmation that what you are receiving is the very best, I think it is a great idea….provided it wouldn’t cost a ton or exhaust you to go there.
Best of luck to you and way to go on your progress!
December 6, 2012 at 7:17 am
If you are making progress in getting your strength back, I don’t see what the problem is. Recovery is slow, and three months is not much time at all. I, too, was a quadraplegic for a time (core strength, as well as limbs and extremeties, was effectively zero). It took eight weeks of in-hospital therapy to get strong enough to go home in a wheelchair, five weeks of home therapy to get strong enough to be able to go out with a cane (just barely walking), and five months of outpatient therapy before I felt strong enough to stop formal therapy. Then it was eight or nine months after that when I stopped using my cane outdoors.
When I first started walking with a cane, it was an effort to walk two blocks. This was enough to get to the bus and thence to therapy (and back). Between therapy sessions I mostly rested up for the next one. Today I am nearly normal in my walking range and ability to do physical work without exhaustion.
As long as your strength and balance are improving, I don’t believe you should worry about the rate of progress.
AnonymousDecember 7, 2012 at 1:25 am
I agree that if you have been correctly diagnosed and are satisfied with the care you are receiving and the progress you are making, there is really no reason to be evaluated or treated at a center for excellence. If you are not satisfied with your progress or treatment plan, that would be a different story.
AnonymousDecember 7, 2012 at 2:04 am
I was thinking about going to a center of excellence to see if anything else could be done. I tried IVIG with no luck and the plasma pheresis is working but I am tired all the time. Since my central lines keep getting infected I was wondering if there were any treatments other than IVIG and plasma pheresis. Also, I was wondering if there were any supplements or anything that could be prescribed to help with the tiredness. I am happy with the progress I have made I just do not know if I am missing something that would help. Jay
December 7, 2012 at 2:37 am
IvIg doesn’t work for everyone. I had two five-day regimens of IvIg, but this did not stop the progression. I then had intensive plasma exchange — nine treatments over a three week period while in the hospital. Since then, I rely only on oral medication.
I take it your plasmapheresis is being done outpatient. I don’t know how that compares to the hospital routine, but I would think any form of plasma exchange is not well suited to long term treatment because of the port. What is the plan for how long you will be doing plasma exchange? Are you also taking drugs such as prednisone?
Chronic tiredness is normal, although in some cases (such as mine) it improves slowly over time.
AnonymousDecember 9, 2012 at 11:26 am
I take solumedrol with the plasmapheresis but no prednisone. My neurologist told me the plasmapheresis might last another year or it might last the rest of my life. It seems that since CIDP is so individualized the outcome of the treatment will determine it’s length.
December 27, 2012 at 3:51 am
I sympathize with your continual tiredness and your desire to get back to normal as quickly as possible. At this point, there are only two other main lines of treatment available to you: corticosteroids or immunosuppressants. It would be best to talk with your doctor about your rate of improvement, continual fatigue, and these treatment alternatives. If s/he doesn’t address your concerns, then you should seek another opinion. I did not need the services of any of the centers of excellence, so I cannot speak about them as a patient. I can tell you from talking with doctors from several of them (Minnesota, Wayne State, Johns Hopkins, UCLA, Boston) at the Foundation’s symposia, they are knowledgeable and good places to consider. However, a large medical system in your area might have the expertise you seek, so I would start there and then go to a CoE if you do not get what you need.
Godspeed in your care,
December 27, 2012 at 8:37 pm
Jay, I went out to the Rochester Mayo to get a second opinion to confirm my cidp diagnosis. It was nice because they schedule every test possible in 1 week and I did leave there with a treatment plan.
But if you are looking for ongoing treatment and a Dr to work with permanently, I did not find the Dr at Mayo to be helpful. After his weekly ivig plan for 16 weeks didn’t work, I called him for his opinion regarding rituxin. — Even though I spent 10 days in MN, had every test possible to confirm cidp and my insurance company paid a lot of money to them—he would not give me any opinion over the phone regarding treatment unless I flew back out to MN to see him again.
My advice would be if you are looking for a diagnosis or a one time consult then they are good. Unless you live close enough to one of the centers of excellency that you can drive for ongoing treatment—in that case it would be ideal if you find a Dr you like there. Lori
AnonymousApril 3, 2013 at 1:26 pm
hey Lori, wondering how rituxin treatment went for you. im 6 months in and still no improvement. Been going to dartmouth hitchcock in lebanon. You? seems like their are no real answers for treatment, just rolling the dice. Have you received any new info on treatments?
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