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Living with Polyneuropathy CIDP, GBS, & CMT

Omg my Neuro said CIDP doesn't cause pain


#1

Omg my Neuro who is supposed to be one of the best in Houston just said CIDP doesn’t cause pain. I just burst into years. I have been dealing with pain an now horrible pain for 15 yrs finally got diagnosed 2 years ago an now I’m told this. I changed Neurologist recently because of insurance change. Got to come to "the best " an he has put me in hospital for a week due to symptoms an pain gave me ivig treatments an on my 3 rd visit tells me CIDP goesnt cause pain. I’m just at a loss for words. I said well if CIDP doesn’t cause all these sharp pains shooting an knots in my muscle tissue an severe weakness that when I try to walk on my weak legs they just throb in pain then what is it that i have. An I’ve had 2 emg’s an it showed my legs where almost dead nothing showed up in tight leg an barely anything else in left leg. Eng was done by 2 different people. The first was my old Neuro and she thought her machine was broke an not working then when she did the emg on another part of my bodyit worked. So she said I am so sorry Kelly I had no idea it was this bad. Then I have a top rated somebody at Methodist downtown do my EMG, an my dr days it showed notjing in your legs do the thech days you werent cooperating. I said what how can you stick a needle in my muscles in my leg turn electric on it an i keep my muscle from responding. Have you ever heard of some ordinary 46 yr old women being able to control her muscles to the point that her muscles don’t respond to a needle being stuck in them an shocking the muscle tissue an I can control there be no movement at all. I can’t control that an why would i do that. I didnt do it on any other part of my body. Im already on ligetime disability. So what benefit would I have to fake or not be cooperative during an EMG on my legs. Im just so confused an frustrated. Litterally just sat there an balled. Has anyone else heard this.


#2

Um… This is crazy! Has your neurologist ever had CIDP? Has he not had any other patient complain of pain? On this site so many people are on all kinds of pain medications. I would hope a neurologist would be more sympathetic when a patient complains of pain. We are dealing with nerves, and nerves produce pain! I’m not a neurologist, but I know nerve conditions can be painful, including neuropathy. Sounds like you’ve had some technicians and specialists who have not had much experience with this family of conditions. I hope you find relief and a sympathetic ear.


#3

You really need a new doctor


#4

Thanks ya all for the comfort. I was just speechless. I was crying so hard lol I couldn’t even tell at him. He’s supposed to be one of the best in Houston. Treats ,teaches , all kinds of history in neurology but I’m sorry nerves are nerves an muscles are muscles an they hurt when they are not well. So thanks again an I agree


#5

I absolutely agree that sharp shooting pains are the norm. I have had CIDP for 9 years and when it relapsing, the pain is very distinctive. It shoots up my leg for short periods then quiets and starts again. There are a lot of people on this site complaining of pain so I think it is real. Get a different opinion from someone who specializes in CIDP


#6

Thank you for your support. An for making me understand I’m not crazy.hugs


#7

I always have a web site that explains the disease and when a Dr. or nurse plead ignorant to my expanation. When they find out about CIDP-MGUS they are full of questions. Be armed with info and don’t let them bully you. My prayers are with you.


#8

Kelly, you aren’t crazy my son has CIDP and has severe pain in his legs. This last time he went to the hospital for a relapse the stupid neurologist did 3 emg’s and they all came back that his nerve conductivity was very low. But the dr had the nerve to tell my son he was faking being paralized. The dr told the nurses not to help him so basically he was put in a room at the end of the hall and ignored. They would bring him his food leave it on the tray and expect him to feed himself when he was totally paralized. He was sent home still paralized and within 4 hours had to be re admitted to another hospital. The dr told him NOT to come back to his hospital. At the new hospital they have been very thorough and he is slowly getting his extremities back. He has been in the Hospital since may.
So don’t let your dr tell you CIDP doesn’t cause pain because it does.

Keep fighting don’t give up. Teresa


#9

Wow Teresa I’m so sorry your son was treated that way. I am glad however he’s getting better treatment an hope he continues to get proper treatment.
I understand the emg comments. They said I was not being cooperative during mine because if I was i would not be able to walk due to my emg showed no response. I said how can someone stick a needle in my muscle an send electric current thru it an I be able to control the muscle response. I’ve had 3 emg’s by 3 different people an they all show no velocity or response in legs. So lol I guess I’m a super hero an can control electricity being pushed thru my body. I believe your sons test mine are similar an I will be do happy when we can get a standard medical understanding of what this condition can an does do to people. Thank you so much for taking your time to respond. Love an hugs Kelly C


#10

I just started seeing a counselor to help with dealing with all the aspects of GBS. one of my questions was about pain. Some doctors and of course I have family members that think pain is not a part of this. It makes me crazy, especially when I wake up in the middle of the night in raging pain. He gave me the best explanation yet. There are people and doctors that believe there is no such thing as extreme pain thus no need for medication. Plain and simple. They are nuts, no idea of what they are talking about. You have to move on to people and doctors who’d get it and believe you.


#11

Ty13 you are so right. Thank God my pain management Dr believe there is. He is installing my pain pump this month because I don’t want the pain pill destroying my organs on top of every thing else. Plus pills vaguely work. I should also add I have crps so that doesn’t help either. Good luck I hope things get better hun
Hugs, kelly


#12

Kelly, my son said the same thing about his emg’s the dr told him his machine was broken therefore he stuck him and then kept moving the needle around all the while my son is screaming in pain but the dr said it wasn’t hurting because nothing was showing up on the monitor. Sadly my son was re-admitted to the hospital last night because he was having swelling in his legs with pain and weakness in his left arm. The Dr’s found 3 blood clots in his right leg 1 in calf, 1 in thigh and 1 in the groin. He was also told by the er Dr that the IVIG treatments could have caused the clots so please be careful. No one ever told him that was a side effect. I myself have several chronic auto immune disorders, so I have had several emg’s in my past, I also am a chronic pain person. I wish you the best. Teresa


#13

I had GBS in 2014 and had lots of pain for awhile. I saw one of the top GBS doctors in the U.S. and he was so insensitive and surprisingly clueless. I could not believe how he treated me. He may know a lot about GBS academically but did not really know GBS. It was so disheartening so I can definitely relate to this. I was finally able to move past that experience and found a knowledgeable and understanding neurologist. I hope that doctors will learn to listen more and use their medical background along with the patient’s experience to effectively treat GBS and CIDP.


#14

So sorry you experienced this! I was treated for RA (and never had it) for 4 years by a rheumatologist who was head of that dept at a very prestigious college. Super nice man, but I doubted it the whole way. It was apparently all my CIDP, who knows
Good luck to you


#15

Unfortunately many of the older doctors who graduated when I was in nursing school in the late 70/ early 800’s all have and were taught along with those of us who went through nursing school at the samtime that there is no pain associated with demyelination… unfortunately that covers everything from MS… to GBS?. Or CIDP… and ALS… so you get my point. You literally have to find a doctor who has treated MS… CIDP… GBS… etc to have them comprehend that ere is a pain component. If they don’t believe you, do what I am in the process of doing and find a new pain management doctor. It’s worth the hassle… just to realize you aren’t nuts and you are in pain and have them believe you.


#16

Your neurologist doesn’t sound very sympathetic. Maybe he/she needs to educate themselves on the subject.


#17

I went through 4 years of CIDP treatment, IVIG’s, Prednisone. Second opinion says POEMS SYNDROME. AAARRGGUUUHH. And yes there was pain.