January 9, 2010 at 7:31 am
I have beeen having problems for approximately 5 years and have gone to several different doctors trying to get help. I was originally diagnosed with neuropathy and told nothing could be done by 2 different neurologists. My balance is horrible, no muscle strength from the knees down, drop foot, etc. I was finally diagnosed with CIDP. I am taking 60 mg prednisone every day and had my first week of treatment with IVIG the week after Thanksgiving and received again this past week. It helped me feel better after the first series of treatment than it did this time. I will have 2 more days of IVIG in February and they will evaluate to see if helping.
I do not know of anyone else in our area that has CIDP. I would like to know from some of you that has been dealing with CIDP what the chances are of my getting more balance and the use of my legs back. I am the grandmother of 5-year old tripletts and I take care of them a lot and with other things going on I need to get better. Any ideas or suggestions?
AnonymousJanuary 10, 2010 at 1:33 am
Welcome Ella. My husband has CIDP, and been under treatment for two years now with IVIG two days a month. By the time he was diagnosed he had significant atrophy and loss of use of his right hand as well as some slapping of the right foot(not a total foot drop). No amount of treatment will fix the atrophy as it is permanent. With treatment he has regained about 50% strength in his hand but fine motor skills aren’t great. His foot still slaps when he walks. Overall he feels better and the IVIG has prevented further damage, but the losses he suffered prior to treatment appear to be permanent. Others here may have different experience.
January 10, 2010 at 7:23 am
CIDP is a very rare and uncommon disease. Many neurologists have never even seen this disorder in their lifetime. Just to get diagnosed often requires more than one doctor’s opinion.
Sounds like you are receiving the right treatment and hopefully your diagnosis is correct. If not another opinion wouldn’t hurt, but never wait with either a diagnosis or treatment, because the more damage done to the nerves the harder it is to come back.
You are in the right place here. Many wonderful and caring people respond to these posts, and you can gain much helpful information.
It seems that CIDP does not affect each of us in exactly the same way.
Some people do not get better with prednisone, IVIG or plasmaphersis and need other medicines. The right doctor who knows CIDP is the first step.
It seems like you have your hands full with 5 yr. old twin. and I hope you can get enough rest. Rest is important to fight the fatigue CIDP causes.
Moving around is good too, because the joints, tendons, and ligaments as well as our bones and circulation get what they need. Just don’t overdo it.
Learn as much as you can and have questions ready for your doctor. You do not want to get worse. God Bless You and I hope you feel better!
I you have pressing questions on your mind post them here. Many people on this site are very knowledgeable and helpful.
AnonymousJanuary 10, 2010 at 8:29 am
Welcome to the roundabout Ella,
Its a pity it took so long to get diagnosed..the sooner the better for IVIGs to kick in. Ive been getting them for 2 years now and they keep me fairly stable. You lucky thing having triplet grandchildren..so far ive only got a granddog.
This forum is a godsend…better than many docs.
Take care and good luck. Jet
January 10, 2010 at 9:20 am
Welcome to the Forum Ella,
I am glad you’re here, but sorry to hear your path to DX and treatment was a 5 years long journey with ignorant neuros. I am glad to hear your treatments are helping.
From all the stories people have shared here at the Forum, just like people are different and their journeys are different, everyone’s recover is different. You have found the right place to find support, advice, encouragement, an understanding shoulder to cry on, and folks to rejoice with.
I want to encourage you in that some folks recover fully. My recovery has been dramatic. I was DX’d and treated relatively VERY quickly. Some folks report remission (not me; I continue to battle CIDP). Some don’t do so well.
It’s a tough road. Keep fighting CIDP. Keep pushing your neuro for the best treatment and care; be your own advocate. Keep at your Physical Therapy.
Know that the people here are here for you. Thank you for sharing your journey. May God bless you and heal you from CIDP.
AnonymousJanuary 10, 2010 at 11:58 am
If you feel okay about telling us where you live, it would give you a chance to find out if any of us lives near you. It’s a great support.
I have CIDP and I was told by three neurologists that nothing could be done and trying treatments was useless. Neurologist #4 was just for a consultation (too far to go to him) and he told me it’s never too late, which eventually led me to my great treating neurologist, #6.
Keep in mind that IVIG’S are used to “CONTROL” the progression and you may not always feel stronger and better. As long as you remain stable with the IVIG, it’s working.
January 10, 2010 at 4:51 pm
I live north of Mobile Alabama about 60 miles. I was diagnosed in November 09 by Dr. Chin at UAB. I am using a neuro doctor in Mobile that knows nothing about CIDP but Dr. Chin advised him on the treatment plan. I have been going to a heated swimming pool 3 times per week for water arobics trying to keep my muscles and strength up. I am hoping I can get some improvement in my leg muscles because I have to pull myself up completely with my arms. I have to try to keep them strong!
AnonymousJanuary 10, 2010 at 4:58 pm
I am so sorry for the trouble it sound as though some people are having getting diagnosed and or treated. As i posted earlier today, my son is 8 yrs old and has had CIDP for 6 months. An elevated protein in his spinal fluid, muscle biopsy, Emg and nerve conduction studies concluded his diagnosis. His team of doctors started a 5 day Ivig treatment and after 3 doses he got up out of bed and walked by himself!! He finished 5 days and went once a week for 4 wks, every 2 weeks for 3xs, every 3 wks for 3xs. He should be going every 4 wks now but with the flu season he has had a setback. He is now back to every 2 wks and moving pretty slowly. Hopefully around May he can start spreding them out again. He has a new dr now that says if he gets worse she wants to start him on a steroid, i hope it doesnt come to that. Otherwise he leads a pretty normal 3rd grade life. I pray there will someday be a cure, and am hoping everyone will get the treatments they need!
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