CIDP vs psycogentic parathesis
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January 21, 2015 at 7:53 pm
Hi I am new to this board but I have some question and hoping other people can help me understand things. I was diagnosed with GBS back in 2011 it took me 2 yrs to recoup completely but I did. Then in April of 2014 I have a relapse and went to my neuro that treated me for the GBS he diagnosed me with CIDP, I was unable to walk again with the neuropathy in my legs the worse. I did 5 days of IVIG and started to turn around was able to move around better not normal just better and continue to get better. I had a nerve conjunction done a couple of days after my first 5 day treatment of the IVIG in April which came back abnormal. About a month past and I started to get worse again and had another 3 days of IVIG, which again gave me some relief. My Dr. order IVIG treatments every 2 wks to see if that would help, a couple of days after each treatment I seen improvement for about a week then the week before I would get treatment I would go downhill again. I would not be able to use my legs again. That went on for a couple of months and then my Dr. up the dosing of IVIG treatment to see if I would last longer, then i started has relapses right after my treatments so that was working. So my neuro added cellcept 2000mg and IVIG 75mg every 2 wks and I have been doing that treatment now for 6 months. I did however a 6 wk time period with no relapses has until I got an infection again then it all started again. I keep having relapses every other week when I am due for treatment again. I had asked my Neuro to send me to a specialist Neuro someone that has more experiencing in CIDP and he told me that I need a Psych eval. So I went to see another Neuro and he ran blood work and did another nerve conjunction all came back normal now expect my sensory nerve are destroyed. I still don’t have any deep reflexes in my legs either and with more pain and I continue to have neuropathy in my legs. Now the new Dr. Thinks it’s in my head as well, don’t think that is correct but I am wondering if anyone has had the same experiencing. I am looking into getting psych eval but I don’t feel it is correct. Sorry this post is so long just really would like to have answers as to what is going on. I am still working but I had to go on modified job since this April I really hate it I want to get back to a normal life again. Thanks for listening
Jessica
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January 21, 2015 at 11:09 pm
Jessica, I’ll tell you my situation in case it could help you. The doctor who diagnosed me is a world leader in neuromuscular diseases. He, and he wife, are directors of the Neuromuscular Department at USC here in L.A. He’s qualified. After a muscle biopsy, a spinal tap, and many, many blood tests he diagnosed me with CIDP. My schedule is: three consecutive days of IVIG in my home. The treatments last four hours each day. Two weeks on and one week off. Then repeat. After some early adjustments I have found that I feel no loss of ability before my next IVIG treatments begin. My insurance people thought my treatments were a little excessive and intervened. My treatment schedule got “thinned out.” I lost quality of use. Fortunately, when the treatments began again the use came back. Finally, they had to agree that my treatments were just what was needed. It wasn’t in my mind. I was diagnosed in early 2008. My problem is in my left hand and fingers. With treatments I have reached a level point. It’s never gotten back all the way back to normal. I’ve played sax all my life and no longer can. I’d be happy to speak with you if you feel it would be helpful to you. I don’t know how to get a phone number to you without broadcasting it to the entire forum.
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January 22, 2015 at 12:04 pm
I doubt that your symptoms are psychogenic. Most likely, your doctors just don’t know what the real cause is or how to treat it.
What do you mean when you write that you “continue to have neuropathy in (your) legs”? If you have CIDP, then it is normal to have chronic problems and to have rsiduals even if the active phase is in remission.
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January 22, 2015 at 4:13 pm
Thank you for your replies. I don’t believe the Doctors either, I don’t think anyone would ever choose to feel this way. I am trying to get to UCLA but unfortunely my ins is giving me a hard time because they are not in network and the neurologist I have seen believe it’s in my head. I understand that I should have continue neuropathy in my legs even after the active phase but my Doctor’s keep saying what I am experiencing is not normal for CIDP that is can not come and go so quickly. They want me to see a psych Dr. I am willing to try anything I can keep living this way because when I am good it is so much better I just want it to stay that way. I know there has to be something that will help me I just wish I could find a Dr. that know what they are talking about and that will help me. Before 2011 I hadn’t been to the dr. in 10yrs I don’t like going unless I have to and I hate taking meds so none of this is making any since to me or my family. It is really hard because I am a mother of 5 kids and I work a fulltime job I used to be on my feet for a min of 11 hours a day taking care of people myself so this is really hard to have to be taken of myself. Midlance I would really like to know who you see I am in the LA area would you please e-mail (mrgrumpy77@hotmail.com) so we can talk I would love to speak with you. Thanks again for listening to me I just don’t know or where to go from here. Just looking for answer and a treatment that keeps me going.
Jessica -
January 22, 2015 at 11:42 pm
I still do not know what you mean by “neuropathy in (your) legs.” What are your symptoms? What comes and goes? On what time scale?
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May 8, 2015 at 2:46 pm
Go to Good Samaritan Hospital and see Shalini Mahajan, MD. Board Certified in Neurology and Neuromuscular Medicine.
213-977-2986Just saw her a couple weeks ago. GREAT lady.
CIDP CAN come on fast. The GBS term really screws up understanding this PNS AI disease.
My partner has severe sensory damage, too. I feel for you both. :/
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