New CIDP patient
AnonymousMay 21, 2009 at 10:36 am
I was just diagnosed with CIDP in March 2009. It all started 1 week after my cryo-surgery of my cervix in August 2008. My heart was affected first, along with my lungs. Ended up in ER, but they told me that it was stress and to just relax and take a few days off work. I progressively got worse through the months since August 2008. My co-workers started calling me turtle cause I was walking really slow. I started having migraines in Dec, so they did a MRI of my brain and found several lesions. Started to see neurologist.
Then my right leg muscles started to atrophy and I was unable to walk very well and could not drive. Numbness and pain set in in my legs and arms and hands. Had to use a wheelchair and a walker. Dr. did nerve ending test and muscle test and found that I have nerve damage in in different places all over my body. Spinal tap came back normal, but I was prescribed Florinef in Nov for my heart. They think that the Florinef caused the protein levels to decrease by the time I had the Spinal in March. Thereafter the Dr. had me do intravenous steroids. Did great for 2 weeks, then immediately went back downhill. At the end of March I had IVIg. I felt great for a month and 1/2. Now I’m relapsing and having “ice pick” migraines. This has been very hard for me to accept, because I was a perfectly healthy person before August.
I just wanted to know what to expect and how to deal with this condition.
AnonymousMay 22, 2009 at 7:34 am
Hi JamieLynn! Welcome to the site! So sorry you have been a victom of this nasty stuff! You may need to see your doctors again and see what else theycan do if you are no longer getting IVIG’s. Letting them know you are feeling worse again. I too have white matter lessions on my brain. Hate having this nasty stuff! Some of us get better while others don’t. Just depends on what is going on with you. Each person too is different! I just want to welcome you to the site. Joining us here I think you will learn quite a bit from each and every one of us! Great group in here and everybody is so friendly! Hugs
AnonymousMay 22, 2009 at 6:31 pm
Hi Jamie Lynn,
I was diagnosed with CIDP March 2008. I live in McKinney, TX. I see Dr. Alan Martin at Texas Nuerology in Dallas. I started IVIG in April 2008. I have been having load dose IVIG every three weeks. Next month we are going to wait four weeks but keep the load dose. I am anxious to see if I can extend my treatments out to the point of not needing them.
Last year at this time I was desperate to hear something positive. I just knew after a few months of IVIG I would be back to normal. I actually refused to read this forum at that time because it seemed people wrote about many problems and I was overwhelmed with the length of time people had suffered with CIDP. I finally joined the forum in August and have read it faithfully and learned a lot from the people who post here.
I do want to give you some encouragement. Although I am not back to normal, I am now very functional. From everything I have read or been told, at 18 months of treatment you have usually reached your maximum recovery. I am hoping to return back close to normal by that time. I actually had made a great deal of improvement by November of last year. Prior to that time everything was extremely hard. I am still ever so slowly improving.
I have just received a notice of a GBS/CIDP Support Meeting on June 6th in Dallas. The meeting place is Texas Scottish Rite Hospital. The contact person is Deborah Plimmer 972 298-6877. I have not attended one of these meetings. And I have a conflict with this date also. But, this is something I have wanted to attend and you might find very beneficial.
Please let me know if you have any questions you think I might be able to answer.
AnonymousMay 23, 2009 at 3:09 pm
Thank you all for encouraging me. It feels nice that there are other people who have a horrible condition other than me, that know what i’m going through. After I posted my message, I went to my dr. office. I started having “ice pick” migraines. The dr. said that now he believes that I have CIDP and Fibromyalgia. He told me that I will probably have to sign up for disablilty. I don’t want to quit my job, but is so hard to sit for any extended period of time. My legs go numb and it’s very painful. I really like me job and there is a ladder to climb there. This will be a very hard decision to make. I’ve also heard that it takes forever to get disability. Has anyone received benefits and if so, how long did it take, and what did you have to do.
Thanks for your help,
AnonymousMay 23, 2009 at 11:23 pm
Since you did great with IV IgG for about 6 weeks, did you discuss getting more immunoglobulin? CIDP has ongoing damage to nerves and one usually has to continue to treat to stop this ongoing damage. Since immunoglobulin is very expensive and some people have troubles because of it or troubles getting it, so often doctors try to wait to see how often a person needs it. You need it more frequently than every six weeks. Most people need it at least every 4 weeks–some more frequently than that. Before stopping work and going on disability, please try to stop the damage by either more immunoglobulin (strongly suggest to get a loading dose again to optimize the chance for it to work and then try monthly administration) or, if this is not possible for whatever reason, consider pulse steroids–high doses of steroids given over about 4 days every month or moderately high doses of steroids given once a week. There are several papers of the use of pulse steroids–Dr Gareth Parry is one of the authors and a strong proponent of these. Pulse steroids have less side effects than daily steroids–less effect on sugar regulation, weight gain, high blood pressure, bone weakness, and sustained moodiness.
I do not know how to tie in the ice-pick migraines,except this might be from body stress telling you that you need to do something different. Having your life turned upside down is a tremendous stress.
I would like to comment on one thing that Donna said–as I recently stated in a post about GBS about the “usually quoted” number of 18 months to maximum recovery. GBS is often a one time bad attack on the nervous system and the problems are most often a result of damage that occurs at that time. It can take at least 18 months–often more to heal this damage because nerves are really slow to heal. CIDP is different than this because damage often is ongoing. Treatment with steroids or immunoglobulin stops the damage temporarily (hopefully), but then more damage can occur. So most people with CIDP have to continue to receive treatment to stop ongoing damage. If they are lucky enough to get all damage stopped and their immune system resets, then they might heal in 18 months–but it does not seem that this happens very often as lots of people talk about an up and down and up and down course–meaning that there are still times of damage occuring. I hope that this is clear and most importantly that one should be aggressive to try to stop damage from continuing to accumulate. Hopefully someday there will be a good way to reset the immune system so that we are not just limiting the effects from the damage but stopping the chance of attack and thus curing this disease.
WithHope for a cure of these diseases.
You must be logged in to reply to this topic.