Now What?
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January 20, 2008 at 2:36 pm
The hospital can still not find my EMG from back in May and I recieved a copy of the report of the recent EMG which I knew the guy said was normal but when I read his report I got mad. I am sick of hearing non-organic. I know this is not in my head because trust me nobody wants to go through this kind of frustration and pain on a daily basis. I got that 7 years ago when they tried to say conversion disorder and the neurophsychiatrist said that it was definitely NOT in my head. I started on cymbalta by the Nurse Practitioner at my neuro’s office and when I got her report it was inaccurate also, she mixed up some things I said and it sounds all wrong now. I am sick of tests that they say are normal yet the EMG done was only done on my left side this time and only a few spots not like the first. Mistakes in dictation or straight out mistakes in understanding is getting hard to deal with. I know what my body is and is not doing and so does my husband and the staff seems to look at us both like we are crazy at times. Some days my left arm is not as bad as others and I do keep doing excercises with my legs so that they do not atrophy and that is working well even though I don’t feel anything. I cannot believe that the guy doing the EMG stuck needles in me and I could not feel them and zapped me and I could not feel it in my leg but it hurt in my arm, I already have that shocking sensation going through that arm and that just amplified it alot. I am getting to the point of just letting the CIDP takes it’s own course with me and the heck with the doctors. The I believe it is CRP blood test they took a couple different times has come back elevated they say slightly but my levels of things in my body have always been on the low end or lower. Blood pressure has always been 98/52 until now when it is what everyone would consider normal or slightly elevated and my white cell count has always been low so when I have an infection it shows in the normal levels although on the high end. Wish they would have done all tests on me when I was normal so they could see the differences now but they dont look at it like that at all. Gee looking at it that way I have always been abnormal!:confused: Don’t know what to do now I have the neuro appt on Feb 19th after they get me up to 90mg of cymbalta for a week, they started out at 30 for a week 60 for two weeks and 90 for a week before I see her. I dont know if I even want to keep the appointment anymore. I am so confused and frustrated especially after reading some of my records that are so messed up either they do not contain info or it is mixed up or nonconclusive. My regular doc has been very supportive and has helped with pain meds and that is what he will continue to work with me for and other things but he does not know anything about CIDP and I can understand why he would want someone else to start the treatment for this, at least he is honest about it. He knows this is not me, I was very outgoing and upbeat and working 2-3 jobs at a time and now he says he can see the frustration and anxiety I have about all this and there is a big change in me. Yeah not being able to go anywhere by myself since March has been really hard and now with the powerchair I can get around my house a little easier but it is a pain to get in and out of our HHR so I dont go places often. I still have my manual chair but when it is just my husband and I he has to push because my left arm wont work right and I just go in circles, kinda like the hospital is doing to me!:D Anyway thanks for all the info you have all provided for me in the past and the responses that you have given to my rambling it does make things easier to take when there are others going through this even though I wish none of us had to go through it at all. Thank you all!
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January 20, 2008 at 9:58 pm
I am sorry that you are going through so much. When I read stories like yours I get angry at our medical system. You know just as well as anyone that something IS NOT RIGHT but no one seems to want to listen. I wish you luck at your next neuro appointment. Do not let this horrible disease get the best of you. Do not give up! I am sending blessing and prayers your way.
Take Care!
MJ -
January 20, 2008 at 10:52 pm
Jody,
I know how frustrating getting the proper treatments can be, but you must persevere & fight this illness. If I remember right, you have not even had any IVIG infusions? You might find that you can become almost as good as new again. CIDP can get very ugly, trust me, you don’t want to let it just run it’s course. I was almost totally paralyzed for 2 1/2 years, & that was with weekly IVIG, PP, & 1,000 mg of weekly solumedrol. Get the treatment you need, no matter what they put you through. -
January 20, 2008 at 11:17 pm
Sorry you have to go thru all this again and again. I know how frustrating it has to be when you don’t feel good it is even worse.
When that test was done or any test or meeting was held they sent a copy of the report to several of my Doctors. One was my family doctor and then the others that needed to know the results. It could have been forwarded to one of your other doctors? Just a thought!
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January 22, 2008 at 6:04 pm
Thank you to everyone who replied. I just recieved copies of my records to send to an attorney willing to look at them and read the neuro report that walked out of my room and I was upset because he outright lied and when my husband read it he was even more ticked off because he was there. There are so many inaccuracies in these records it is unreal. I am more angry and frustrated now than before. Who can I trust around here? I am so tired and in so much pain that I can hardly stand it. But now I am mad and after I talk to the attorney next week I will decide about calling the news media in on this because I do not want to tip my hand about going to court if we are. I will not allow these people to make me look like and idiot or crazy person anymore, I know something is wrong with me physically NOT mentally. Just because they do not get their narrow minded test results the way they want them doesn’t mean much. I have found alot of information and have collected enough to show them they are wrong whether they like it or not. I had one say that info off the internet is not accurate and I shouldn’t pay attention to anything I read here. Yeah okay whatever! That is the same one that I gave name of specialists to contact but thought he knew everything, to big an ego and no bedside manner at all. He will pay one way or another for what he has put my family and me through even if it is just embarrassment on him I don’t care. I want to thank you all for the support and my prayers are with all of you too. Thank you and yes I will keep trying but it is goingto be a very uphill battle one that just may end up too steep for me to climb but I will try.
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January 22, 2008 at 6:44 pm
Jody,
As hard as it may be, keep the faith and stay strong. I cannot even imagine what you must be going through! I am praying that you get resolve to this situation.
Dawn Kevies mom -
January 22, 2008 at 7:36 pm
Jody so sorry to hear about all of the trouble and wrong info. I don’t blame you for being mad.
CIDP is doing a job on me mentally and emotionaly. I was dx Nov 2007. A few months after you.
I have started a medical journal which i will take into md next Wed the 30th.
I’ve had 13 IVIG infusions, which have not helped, on a high dose of Prednisone, and CellCept. So far, no results.
I have zings, zangs, pain, numbness, and electric shocks all over body.
I’m can not stand for over 30 seconds without the aid of a walker and occas use a w/c.
Trying to do anything around the house is extremely difficult.
One thought, they tried me on Cymbalta and the drug made me aggressive, angry, and wanting to hit something. They had to take me off of the Cymbalta.
I sure hope the lawyer has good news for you and a direction to head. That Neuro MD should not be allowed to practice.
Don’t give up. I know how easy to say I give up, but neither of us can do that. We still have a life to live.
God will give you the strenght to get through this and you will be in my prayers.
Beth -
January 22, 2008 at 7:36 pm
Jody so sorry to hear about all of the trouble and wrong info. I don’t blame you for being mad.
CIDP is doing a job on me mentally and emotionaly. I was dx Nov 2007. A few months after you.
I have started a medical journal which i will take into md next Wed the 30th.
I’ve had 13 IVIG infusions, which have not helped, on a high dose of Prednisone, and CellCept. So far, no results.
I have zings, zangs, pain, numbness, and electric shocks all over body.
I’m can not stand for over 30 seconds without the aid of a walker and occas use a w/c.
Trying to do anything around the house is extremely difficult.
One thought, they tried me on Cymbalta and the drug made me aggressive, angry, and wanting to hit something. They had to take me off of the Cymbalta.
I sure hope the lawyer has good news for you and a direction to head. That Neuro MD should not be allowed to practice.
Don’t give up. I know how easy to say I give up, but neither of us can do that. We still have a life to live.
God will give you the strenght to get through this and you will be in my prayers.
Beth -
January 22, 2008 at 10:12 pm
jody,
i got so tired of correcting the reports the docs wrote up on me, i stopped. sorry to say, ‘welcome to the club’. what RU taking for your pain? take care. be well.
gene gbs 8-99
in numbers there is strength -
January 23, 2008 at 2:48 pm
To Gene I am on 75mcg of fentynal patch every 72hrs I change them and lorecet 10/650 every 4-6 hours which most days it is every 4 hours and still my painlevel is at a 6. They started last week with cymbalta at 30mg I start 60mg today for two weeks and then up to 90mg if I can handle it the week I see the neuro on feb 19th. I was on Lyrica but it made we sick and was given solumedrol infusions for one week and it did seem to help my arm a little but now it is back to where it was. The one bag of IVIG they started and did not continue when the doctor walked out sure won’t do anything unless I have the whole 5 day loading dose. I just don’t know what else to suggest to my new neuro because I don’t know if she will be any better than last especially if she goes by what he wrote in his records. Wow what a mess this whole thing is.
Thanks everyone for the support I will keep trying until I literally cannot move and then I am pretty sure my family will keep pushing me anyway until this all gets figured out. Thanks again. -
January 23, 2008 at 9:24 pm
jody,
if lyrica didn’t work for you, you can try these non narcotics; neurontin, elavil, topamax, lamictal, trileptal, keppra, carbamazepine, cymbalta up to 90mg as they are correctly leading you to. stay w it. you must get that pain of 6 down. take care. be well.
gene gbs 8-99
in numbers there is strength -
January 24, 2008 at 2:51 pm
Thanks Gene my son actually takes lamictal and trileptal for two types of seizures but I didn’t know they could be used for this. I will mention these others to my neuro if the cymbalta does not work when we get up to 90mg. The six is what I could tolerate for the time being but it is definitely getting old. To a point I am used to it but on the other hand it sucks to hurt that much all the time. I guess I will have to wait and see again but as usual I am not very patient because of all the wait and see that has already gone on. Thanks again I really appreciate everyone on this forum because you all let me vent and also give support. I am sure my family gets tired of asking how my day was and it is never very good. I know they are waiting for the day that I say not bad although that did happen for about a week after the solumedrol until the EMG and then my arm starting going down again and pain came back full force again but we will see where the cymbalta takes me and what the neuro has decided when I see her. My rgular doc said if we get no where I may have to go to Mayo(which I will not do) or U of M (where I will go) except we cannot afford to make the trip any time soon no matter how we look at it there is no extra money unless my appeal goes through and I get my disability which won’t be any time soon I am sure. Thanks again!
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