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Living with Polyneuropathy CIDP, GBS, & CMT

This stuff sucks


#1

Its been a year may 5. Athem blue cross is horrible, the doctors I have seen 10 plus are horrible. It’s bad enough to have GBS, but to not get any treatment at all. I have been told iam cured to why are you here, it’s in your head, that’s what happens when you retire, to it hasn’t been a year yet what do you want, to your due for a pap mammo Gramm and tubes sticking in and up openings. I have done a lot of research and treat myself. The calls I have with neg results to complaints I have file neg results. To the daily pain. Sorry I know they say to be positive but how can I when all I get is BS


#2

Hi Tally, I understand about the negative reactions because I have experienced quite a bit of that along the way. I have decided over the last couple months to search for doctors more familiar with my situation and drop the negative ones. I am going to a Center for Excellence next month which will be right at a year for me as well. I found a new Neurologist just over an hour away at a teaching hospital too. He is eager for me to see this other doctor but in the meantime is treating my symptoms and it has helped. Finally a caring doctor who has seen symptoms like mine (although he is still unsure about everything but this is progress for me). I have dealt with the pain and symptoms without treatment for awhile and I have suffered quite a bit on my own without much medical support but I knew this was never in my head. I have forgiven those who I feel are just uneducated about this whole thing and shook off the jerky ones. This was hard to do but helpful to me. My physical therapist has been very supportive and I have really clung to that along the way. My son is helping me rehabilitate with swimming and he has been great. I've decided to not only drop the negative medical support but turn away from any resulting negative emotional support too. I'll never forget what I have experienced but the positive for me has been the support from this group and those with similar struggles that I have connected with as well as my family and friends. This really helps me get through the tough times as I search for a better understanding of GBS and how to take care of myself throughout this ride. I hope your experiences get better and you are able to recover soon!


#3

Thank you. Yes no more neg doctors. When my insurance switches I will be able to pick my own doctors. I walk when I can and I keep track of it. I do make wind chimes that’s my night therapy and pottery class iam doing again. Kills the hands but I enjoy it. This stuff sucks but life goes on. The doctor that did the spinal Tap was great my new insurance covers him, but he is gone :slight_smile:


#4

It is so hard to stay positive. I'm in Australia and noone seems to know anything over here about GBS, well minimal stuff. I totally understand how hard it is to stay positive.

I was diagnosed in april 2015. When I was discharged I saw my neuroligist once which was in August 2015. By then I had got my eye sight back but not perfect but still had all other symptoms. My walking was still bad and still walking with a frame. He said I dont need to see you any more as you will just slowly improve. I have been to doctors but they all admitt to me that they no nothing about GBS and cant help me. One did send me to Physio for awhile but the exercises they gave me at physio caused alot more issue to my muscles. Now Im in constant pain, no pain releive no nothing because noone seems to help me. I am seeing another doctor tomorrow who beleives he may be able to help me find someone with some knowledge on GBS.

Im normally a very positive person but it has taken its toll on me now and its truely hard to keep putting on the brave face. Well I guess we have to keep trying to keep positive as things could be worse is what I keep telling myself.


#5

Nicky, I can relate to your frustration at the lack of information.

I was diagnosed in 1982 and it took me until a few short weeks ago to find this great group. For all these years I had never spoken to, or met, another person with GBS. Sadly, they really don't seem to have much more information on GBS now than they did back then.

I think the key is not necessarily finding a doctor that just has knowledge about GBS, but finding a doctor who is willing to listen to you, work with you to manage your symptoms and be able to admit they don't have all the answers, but are willing to keep learning and trying to find what works best for you.

Back then, there was no therapy for pain management. I was told that the pain I was experiencing was good, it meant I could regain feeling and use, the nerves were not destroyed. Not much consolation at the time.

I was under my neurologists care for 12 months, then, like you, I was told that there was not anything else that could be done for me. I could possibly continue to improve, but he wasn't sure. I did continue to slowly improve over the next couple of years.

Each person's experience with GBS is unique. Never minimize the difficulty of your journey. Be kind to yourself, listen to your body, trust your instincts and keeping working towards your recovery. You will have some days that are tougher to work through than others, but remember that they too shall pass. Pretty soon, your good days will greatly outnumber the bad. When I had an especially hard day I would make a deal with myself. I would let myself be angry, sad or frustrated for that day, but when I woke up the next day that was the past. I would move forward as positively as I could and not allow myself to dwell on the negative.

I hope you find a doctor that will work with you, and a recovery plan that makes things better not worse. Stay positive and strong, it WILL get better!


#6

What wonderfully philosophical and positive discussions! I'm Seenie and I work behind the scenes on Ben's Friends communities. I don't have GBS, but I do have a disease that makes life really difficult for me. One of the pleasures of my volunteer work here is that I get to see so many people who are coping with really really difficult life challenges, and who still find the time and emotional energy to reach out and encourage others. (Of course, I'm doing the same, and I know that in my case, each time I reach out to encourage someone else, I feel better and braver myself.)

And that's the beauty of Ben's Friends communities: we all get it, and by reaching out, we support ourselves as well as others! I'm so glad that you found us, and hope that you are too!

Stay strong!

Seenie from Moderator Support


#7

Hi Charlotte

Thanks so much for your words. I do beleive I have now found a doctor that is willing to work with me. He does admit he has minimal kowledge of GBS but he said he would love to see me and chat and work through things together and find the anwsers together. This put a smile on my face as that's all i want is to have a doctor to want to work it out with me.

I have now been put on a tablet called Lyrica which helps with nerve damage. It has helped me alot but doesnt stop the pain of course but does ease it.

Thanks again Charlotte. I enjoyed reading your post and it did make me feel alot better.

Charlotte said:

Nicky, I can relate to your frustration at the lack of information.

I was diagnosed in 1982 and it took me until a few short weeks ago to find this great group. For all these years I had never spoken to, or met, another person with GBS. Sadly, they really don't seem to have much more information on GBS now than they did back then.

I think the key is not necessarily finding a doctor that just has knowledge about GBS, but finding a doctor who is willing to listen to you, work with you to manage your symptoms and be able to admit they don't have all the answers, but are willing to keep learning and trying to find what works best for you.

Back then, there was no therapy for pain management. I was told that the pain I was experiencing was good, it meant I could regain feeling and use, the nerves were not destroyed. Not much consolation at the time.

I was under my neurologists care for 12 months, then, like you, I was told that there was not anything else that could be done for me. I could possibly continue to improve, but he wasn't sure. I did continue to slowly improve over the next couple of years.

Each person's experience with GBS is unique. Never minimize the difficulty of your journey. Be kind to yourself, listen to your body, trust your instincts and keeping working towards your recovery. You will have some days that are tougher to work through than others, but remember that they too shall pass. Pretty soon, your good days will greatly outnumber the bad. When I had an especially hard day I would make a deal with myself. I would let myself be angry, sad or frustrated for that day, but when I woke up the next day that was the past. I would move forward as positively as I could and not allow myself to dwell on the negative.

I hope you find a doctor that will work with you, and a recovery plan that makes things better not worse. Stay positive and strong, it WILL get better!


#8

I'm so glad you found a doctor willing to work with you to figure things out. That has made a big difference for me. So has reading the comments by the folks in this group. Sometimes you just need to know that what you are experiencing is real, not just in your head, and when you can't get a lot medical information on what you are feeling that can make an incredible difference. I hope the Lyrica works for you, take care and be well!


#9

Hello all I understand your frustration as I’m going through the same thing. I was diagnosed in 2003 & still have pain in both thighs sometimes bottom of feet & back. Thighs is constant I was discharged from one pain mgmt. Doctor as he said PCP can write scripts for avinza. PCP got tried of writing them & sent me to a different pain Doctor. He put me on oxycodone & OxyContin. I had somewhat of a life. He left & APRNs took over.saw different one each visit. Then one visit APRN reduced my dosage. I kept tells GN them I went from doing a little to doing nothing because the lower dosage didn’t help at all they never gave me a reason why they lowered it… But I asked & paid for a copy of my chart from the time Doctor left to present well I found out why they lowered dosage. A few times I ran out of oxycodone as the pharmacy was having a hard time getting it. APRN was aware of this too but in chart they said I ran out early!! Then went to fill RX pharmacy couldn’t fill went to another pharmacy same thing come to find out the APRN got arrested & license pulled so again that wasn’t my fault. Now I’m out of that one been without Meds since middle of February. Went to PCP yesterday he’s sending me to a neurologist again but in the meantime won’t even give me anything to ease the pain & withdrawal. He said because I’ve been to a pain Doctor he can’t prescribe anything. I’m going crazy here


#10


Jazz said:
Hello all I understand your frustration as I'm going through the same thing. I was diagnosed in 2003 & still have pain in both thighs sometimes bottom of feet & back. Thighs is constant I was discharged from one pain mgmt. Doctor as he said PCP can write scripts for avinza. PCP got tried of writing them & sent me to a different pain Doctor. He put me on oxycodone & OxyContin. I had somewhat of a life. He left & APRNs took over.saw different one each visit. Then one visit APRN reduced my dosage. I kept tells GN them I went from doing a little to doing nothing because the lower dosage didn't help at all they never gave me a reason why they lowered it.. But I asked & paid for a copy of my chart from the time Doctor left to present well I found out why they lowered dosage. A few times I ran out of oxycodone as the pharmacy was having a hard time getting it. APRN was aware of this too but in chart they said I ran out early!! Then went to fill RX pharmacy couldn't fill went to another pharmacy same thing come to find out the APRN got arrested & license pulled so again that wasn't my fault. Now I'm out of that one been without Meds since middle of February. Went to PCP yesterday he's sending me to a neurologist again but in the meantime won't even give me anything to ease the pain & withdrawal. He said because I've been to a pain Doctor he can't prescribe anything. I'm going crazy here

#11


Jazz said:


Jazz said:
Hello all I understand your frustration as I'm going through the same thing. I was diagnosed in 2003 & still have pain in both thighs sometimes bottom of feet & back. Thighs is constant I was discharged from one pain mgmt. Doctor as he said PCP can write scripts for avinza. PCP got tried of writing them & sent me to a different pain Doctor. He put me on oxycodone & OxyContin. I had somewhat of a life. He left & APRNs took over.saw different one each visit. Then one visit APRN reduced my dosage. I kept tells GN them I went from doing a little to doing nothing because the lower dosage didn't help at all they never gave me a reason why they lowered it.. But I asked & paid for a copy of my chart from the time Doctor left to present well I found out why they lowered dosage. A few times I ran out of oxycodone as the pharmacy was having a hard time getting it. APRN was aware of this too but in chart they said I ran out early!! Then went to fill RX pharmacy couldn't fill went to another pharmacy same thing come to find out the APRN got arrested & license pulled so again that wasn't my fault. Now I'm out of that one been without Meds since middle of February. Went to PCP yesterday he's sending me to a neurologist again but in the meantime won't even give me anything to ease the pain & withdrawal. He said because I've been to a pain Doctor he can't prescribe anything. I'm going crazy here. My husband doesn't want to hear anything about it either.

#12

Check out LJs profile. He is from Westminster and has a GBS doctor he is quite happy with at Cedar Sinai.

Just a possibility.........




#13

Just a suggestion maybe if you printed out a few articles on GBS for your new doctor it might help. He’s willing to work with you so maybe that will help. Chin up we’re all here for you.



Nicky said:

Hi Charlotte

Thanks so much for your words. I do beleive I have now found a doctor that is willing to work with me. He does admit he has minimal kowledge of GBS but he said he would love to see me and chat and work through things together and find the anwsers together. This put a smile on my face as that’s all i want is to have a doctor to want to work it out with me.

I have now been put on a tablet called Lyrica which helps with nerve damage. It has helped me alot but doesnt stop the pain of course but does ease it.

Thanks again Charlotte. I enjoyed reading your post and it did make me feel alot better.

Charlotte said:

Nicky, I can relate to your frustration at the lack of information.

I was diagnosed in 1982 and it took me until a few short weeks ago to find this great group. For all these years I had never spoken to, or met, another person with GBS. Sadly, they really don’t seem to have much more information on GBS now than they did back then.

I think the key is not necessarily finding a doctor that just has knowledge about GBS, but finding a doctor who is willing to listen to you, work with you to manage your symptoms and be able to admit they don’t have all the answers, but are willing to keep learning and trying to find what works best for you.

Back then, there was no therapy for pain management. I was told that the pain I was experiencing was good, it meant I could regain feeling and use, the nerves were not destroyed. Not much consolation at the time.

I was under my neurologists care for 12 months, then, like you, I was told that there was not anything else that could be done for me. I could possibly continue to improve, but he wasn’t sure. I did continue to slowly improve over the next couple of years.

Each person’s experience with GBS is unique. Never minimize the difficulty of your journey. Be kind to yourself, listen to your body, trust your instincts and keeping working towards your recovery. You will have some days that are tougher to work through than others, but remember that they too shall pass. Pretty soon, your good days will greatly outnumber the bad. When I had an especially hard day I would make a deal with myself. I would let myself be angry, sad or frustrated for that day, but when I woke up the next day that was the past. I would move forward as positively as I could and not allow myself to dwell on the negative.

I hope you find a doctor that will work with you, and a recovery plan that makes things better not worse. Stay positive and strong, it WILL get better!