Hi, I'm hoping I get some ideas or help, my husband has been dealing with what we thought was CIDP since November of 2010 when I had to take him to the ER because he went numb from the feet up to his hips..there was a doctor there who said he had GBS..other doctors thought it was anxiety....this other doctor did the spinal tap and sure enough the protein was high...he was treated with IVIG and sent home. He hasn't been well since. He still has the buzzing, and weakness in his legs and arms. The problem we have is because he didn't lose his reflexes the doctors say he doesn't have CIDP or had GBS. But he has all the other symptoms...He has been check for Lyme, Spinal Stenosis, and a slew of other diseases, and everything comes back negative..or normal...and the one doctor who is treating him will not make a firm diagnosis...she keeps saying well we will send you hear or there do this test that test...She doesn't know what it is because his three rounds of IVIG didn't "cure" him or make him almost back to normal....as of last spring his protein was still high....what can we do...its like no one in this area want to help...His primary care doctor is doing all she can to help..but she's not a specialist...What should we do, and can you have CIDP/GBS with out losing your reflexes...they are slightly weaker than normal...very light change.
i assume they ruled out neurosarcoidosis ans central nervous system lupus, hashimotos encephalapathy? i actually have hyperreflexes but high ganglioside antibodies and igm. to err on the side of caution can she send a paraneoplastic panel off to mayo clinic? and rule out arnoid chiari malformation?
Hi There Tamara,
my son has a diagnosis of CIDP which relapses frequently between IVIG. His protein was high on LP but his reflexes dont necessarily disappear in a relapse despite numbness tingling and weakness in his limbs. They were very weak in his first presentation only.
It must be very unsettling for there not to be a firm diagnosis. Take care.
Brenda
your husband story sounds very similar to mine, even though I continued to get weaker, my doctors werer certain I had GBS. I found a neurologist of specialized inCIDP and it made all the difference. it took months to get in to see her though.
before seeing her we found a study that said that after so many weeks of persistent symptoms, doctor should consider treating forCIDP.
good luck to you and your husband.
I forgot to add that’s the first thing she did was get her calendar and count how many weeks I had had symptoms.
being treated for GBS only offered relief
Hi Tamara. I can understand how scared and frustrated you both must be. I had GBS initally in Feb.2011, and then they told me that it is now considered to be CIDP. My neurologist actually said that GBS is now considered to be the same thing as CIPD . ( from what I read on this site there are doctors who say the 2 are different and some that agree they are variations of the same thing).I was diagnosed after the spinal tap showed increased protien levels. I lost all my reflexes and a year later have only minimal reflexes. . I was given IVGG in the hospital but I continued to get worse so I was given Plasma exchange 3 times a week. I was in hospital for 8 weeks and then in a rehab hospital for 3. Recently ,I have been switched back to IVGG monthly to see if it will help. I still have numbness and buzzing in my feet, numbness on the left leg and left side of my head. The IVGG seems to help. I would really recommend that you get a diagnosis as soon as possible. That may mean a referral to another centre where they are used to treating GBS/CIPD. Do it. Some patients respond to one treatment better than others. I think that your doctor is incorrect if she expects that the IVGG should have cured you......most of us accept that this is a chronic illness and that the IVGG helps the symptoms....but there is no cure for most of us. Good Luck.
Hello Tamara,
I have CIDP for a very long time now,12 years plus! I remember when i eventually got a diagnosis it took the doctors nearly two and a half years.I had test after test after test.Got there in the end though when i saw a nerve specialist,he was interested in my case and he diagnosed me with CIDP .I did a lot of studying on the internet and ended up knowing more than the doctors did about this horrible disease!!!!! I have had steroids (tablets and drips) but they made no difference,so I SUGGESTED TO THEM to try plasma exchange but that did no good so then i had a blast of chemo but that just made me sick so eventually ended up having IVIG (intretect) and soon as i had the first bottle my body went into anaphylactic shock,felt like i was been strangled and my kidneys tried to shut down,anyway i refused to leave the hospital until i had another go on this IVIG treatment so they gave me some periton and off i went again and i was ok,within about 3 hours my feet started to get warm and tingly(what a feeling).It took me about three years to get the timing and dosage right but got there in the end,now i go in hospital every 28 days as a day case patient for 10 bottles of IVIG over two days,i can walk pretty good and pain free.The docs said there is a chance it could burn itself out but i know i have got it for life now plus while i was waiting for a diagnosis the damage has been done! I dont moan and complain i just get on with life as i know there are folk out there that are worse than me :)
All the best now and take care of your husband and be patient with him as he is bound to get mad and ratty at some point and take it out on you and his friend but remember,he did not ask or catch this disease! Good luck.
i'm not sure about those things....they didn't mention any of them...they just did alot of blood work, cat scans, mri. I will have to ask, thanks
js121499 said:
i assume they ruled out neurosarcoidosis ans central nervous system lupus, hashimotos encephalapathy? i actually have hyperreflexes but high ganglioside antibodies and igm. to err on the side of caution can she send a paraneoplastic panel off to mayo clinic? and rule out arnoid chiari malformation?
Hi Tamara, I am so very sorry your family is having to deal with such a horrible crisis. It would seem that it is almost impossible to get a correct and solid diagnosis. That is until you find the right doctor. When you read the postings on just CIDP, you will find so many brave, intelligent people who have had to really be extremely proactive where their health is concerned. Many of us were with doctors who were afraid to commit to any diagnosis at all while we got weaker, more numb and more emotionally distraught. I don’t know if your husband had GBS, or now has CIDP, the chronic form of the disease. I do urge you to find a neurological practice with many doctors so your husband can be tested by doctors with different sub-specialties. The practice my doctor is with has a neuro who is recognized internationally as an expert on MS and I saw her first. She was pretty certain before tests that I did not have MS. She then had another dr, an expert in EMG testing and CIDP, redo my EMG. She diagnosed me with CIDP within 10 minutes of conducting the EMG. She only treats CIDP patients and is now my dr. Previously, I was with a different practice for five months and that neuro just kept shaking his head in confusion after every test result. My proteins happened to be normal. The best practice is one where the doctors have been exposed to many different illnesses. It’s hard to diagnose a disease you’ve never seen. I don’t know where you live, but I would get on the computer and start researching neurologists in the nearest major city. You can look up the doctor’s specialties online and also call their office and ask questions. If you let me know where you live, I can try to help you with that. I know anxiety can wreak havoc on your body, but making you numb from your feet to your hips? That sounds ridiculous to me and I am so tired of drs who use anxiety as a catch all when they don’t know what’s wrong with you. I had such chronic pain years ago that I was on pain meds for quite a while. One day, I decided to just stop taking them. I went through hell. Shaking, unable to sit still or sleep for 10 days. I had no idea what was wrong with me and ended up in the ER three times during those ten days. I told the drs everything I could think of, including the part about stopping the pain meds. All three doctors sent me home with a couple of Valium and the same diagnosis:SEVERE ANXIETY. I kept telling my husband “if this is anxiety and I am going to keep feeling like this, I don’t think I can live”. I was tortured. Not one of those three doctors recognized that I was going through severe opiate withdrawal. Anxiety my ass! After ten days, all the symptoms stopped, like turning off a faucet. Let me know if I can help. Keep hanging in there. You and your husband will find the answers and he will get treatment. Jo
Tamara,
I’m so sorry for the pain you and your husband are going through. Have the doctors ever considered MMN, multiFocal motor neuropathy? I was diagnosed with cidp in april 2011, and I’ve been getting IVIG treatments every since but I still haven’t seen any improvements…but I was not getting worse; so the neurologist ordered 5 treatments of plasmapheresis…that didn’t help, then she put me on steroids…omg, that made me feel worse. Finally,.they ordered another emg, which revealed mmn…what I’m trying to say, unfortunately with this condition you have to be your own advocate and demand more testing and if they don’t know referring to someone with more experience. As of know, I’m on IVIG every 21 days for two days, prednisone 30mg weaning off 5mg every two weeks, and on cyclophosphamide a chemo drug used to treat mmn. I’ve also scheduled an appointmentat md anderson cancer center, to see a neuro-oncologist. I know I don’t have cancer, but since he is a cancer echoey I what to make sure I’m on the right track.
I wish you and your husband the best luck of the world!!
God bless,
Barbara
I want to think everyone who has replied to my note...you have given me some good ideas and hope that we will someday get to the bottoms of this...It is hard for me watch my husband go from someone who would work 10hrs aday and then go work in the garden or on cars for another 5hrs to only have the strengh to work 3-6hrs and then be so tired he needs to take a nap, which doesnt help much...I have another question....can you suffer from chronic fatigue with cidp...we were told by his nero that cidp wouldn't cause this and something else must be going on..why couldn't you get that way when its hard to move..
"we were told by his nero that cidp wouldn't cause this and something else must be going on.."
My understanding is that fatigue IS a side effect of CIDP. It certainly makes sense that as your body works harder to do what it used to do, fatigue would present itself.
I hope you and your husband found some useful things in the comments so far. Please keep us informed.
M
thats ok....I get real frustated too. it feels good just to rant off...I know I've done it too.
ruthie4bearz said:
I hate what you are going thru..you and your husband. I could tell you it makes you crazy that they don't belive you. That it's not ANXIETY!!!! It's real!!! How much do you have to research before they stop saying all your pain isn't Anxitety? How many doctors does it take?
Which test will show that there is something wrong?
Why do we go thru not only a diease, but all the doctors put you thru. Isn't it punishment enough just to be sick.
Why if they don't understand, or know do they rentlessly use Anxitety as the "reason"....please doctors think of something more conviencing were not stupid~
Frist we don't just stand there and listen we get pro active, why because you either handed us a dignoses that no one heard about, second we want to feel better mostly.
Why is it so wrong for people to want to feel better? Why is it so hard to understand we do not just stand or sit there and listen but we get pro active with or bodies only to be put down by doctors. Who maybe never seen every diease out there doesn't make it ok doctor to point fingers and say it's in our head's, it must be our minds causing all of this.
Why if you don't know something doctor then just tell us.....better for us to move on to another doctor who just might have answers. Not to say we we'll ever find everything out....God only made us people....including you doctor.
So next time someone is in pain, please treat with repect, and understand WE ARE IN PAIN!!!
I wish there were easier answers.....I wish my body did't hide answers that could pin point to this or that reason we are in pain. But sometimes people die because it was never discovered what really was the matter until the person died. Horrible as it sounds it feels like that to me now.
I guess finding answers aren't easy.......either keep on going to doctors, take what you can, hope something some day will work. Right? Wrong?
That day will happen for you or me or the next person. But we are all different how med's works on us....or effects us or body's....some have side effects some don't...others just different....like we are born different...maybe it's just that?
Whatever just doctor treat us with respect not say it's in our head....please.....because it is real as bitting into that apple is to you...and maybe you have a tooth ache and maybe no one can see why? but it still hurts.
thank you now I'm off my box.
ruthie
I have CIDP. Was diganosed in April of 2011. I have been having IVIG every 21 days now since my diagnosis. I have not lost any of my reflexes. They are all normal. I had tingling and numbness in my right foot and it progressed to both of my legs. The first simptoms began in Nov 2010 and I was diagnosed in April 2011. I was lucky because it only took 6 months for my diagnosis and start of IVIG. My doctor said that you don't have to lose reflexes to have CIDP. We hope with my treatment of IVIG I will never lose my reflexes. Go see someone else who will listen to you if you can't get a proper diagnosis from your neuro. I was told the earlier you start treatment the better your chances are of remaining normal feeling and not progressing to permanent damage.
Hi everyone,
I live in central NY...about a 4hr drive west of NYC...i REALY don't want to go to NYC for a doc but I will...Does anyone know of a good doctor in the central NY area?
Hi tamara, im so sorry I am not familiar with Central Ny, only NYC. I see dr Russell Chin at cornell. If need be, you can ask for all the testing in one day so you dont have to travel too far. Yesterday I watched the most fascinating seminar. It is worth its weight to watch. I have a genetic mutation called MTHFR, I am homozygous for C677T and what that means is im missing an enzyme and cant process folic acid or b vitamins. In other words, I need methylated forms, not over the counter folic acid or b vitamins. There is a relation to neuroimmune syndromes and this mutation. This might be the underlying cause for me. Its worth getting your husband checked. Here is the link to the seminar. It touches base on autism, neuroimmune disease, chronic fatigue and the root of the issues, its brilliant http://charlottemetrohyperbarics.com/treatment-news/dr-kendal-stewart-seminar
Hi, I live between Elmira NY and Binghamtion NY and about 3 hrs south/east of Albany. I will check out that site..thanks
Hi everyone, I hope everyone is doing well...MY husband and are ok,, we do have one problem we need to find a doctor that will treat him. The nero he has now is just doing nothing it seems. He goes in she does a simple exam how do you feel, bla.bla...well I think we should do this test or maybe we should send you hear and there, mean while he's not getting any treatment no IVIG, no meds, nothing...meanwhile he is just living with the buzzing in his legs, arms and the weakness...and it seams like no one wants to help...
Hi Tamara. If your Dr has already suggested that perhaps your husband should be sent else where then please followup with this. You can phone your neurologist and say that you want a second opinion and you want treatment initiated as soon as possible. This is your right and any good doctor should be more than willing to send you to another doctor if they are unable to diagnose your husband. Be pleasant but firm . It is so important to get treatment as soon as possible in order to get improvement with CIDP or any neourolical disorder.
If your doctor is unwilling to send you elsewhere call another neuroligist near you and explain the situation. Ask for a doctor who specializes in CIDP...even if your husband doesn't have it, they are specialists at ruling out other diseases.You can also call Rochester for a referral or call the CIDP Foundation and get a list of neurologists nar you. You can do this. You need to advocate for yourself.Do not wait.
Tamara said:
Hi everyone, I hope everyone is doing well...MY husband and are ok,, we do have one problem we need to find a doctor that will treat him. The nero he has now is just doing nothing it seems. He goes in she does a simple exam how do you feel, bla.bla...well I think we should do this test or maybe we should send you hear and there, mean while he's not getting any treatment no IVIG, no meds, nothing...meanwhile he is just living with the buzzing in his legs, arms and the weakness...and it seams like no one wants to help...
Hi Joy thinks for the advise. She did send us to Rochester. When we were there they did the usual exam, and an EMG, which was inconclusive...they suggested he had spinal stenosis. When we got back home his PC had two MRI's done and the spinal stenosis was ruled out. When his Nero got the results she said she doesnt know what could be wrong, and that she going to do any other EMG and then is thinking we should go to NYC or John Hopkins. I sent an email to Syracuse hospital to a nero who specializes in GBS but I haven't read anything from them yet. Two nero's in this area has told him that they think it could be anxiety. It just gets so frustrating sometimes....I hope I don't come across as being rude in anyway when I'm explaining things.
Joy said:
Hi Tamara. If your Dr has already suggested that perhaps your husband should be sent else where then please followup with this. You can phone your neurologist and say that you want a second opinion and you want treatment initiated as soon as possible. This is your right and any good doctor should be more than willing to send you to another doctor if they are unable to diagnose your husband. Be pleasant but firm . It is so important to get treatment as soon as possible in order to get improvement with CIDP or any neourolical disorder.
If your doctor is unwilling to send you elsewhere call another neuroligist near you and explain the situation. Ask for a doctor who specializes in CIDP...even if your husband doesn't have it, they are specialists at ruling out other diseases.You can also call Rochester for a referral or call the CIDP Foundation and get a list of neurologists nar you. You can do this. You need to advocate for yourself.Do not wait.
Tamara said:Hi everyone, I hope everyone is doing well...MY husband and are ok,, we do have one problem we need to find a doctor that will treat him. The nero he has now is just doing nothing it seems. He goes in she does a simple exam how do you feel, bla.bla...well I think we should do this test or maybe we should send you hear and there, mean while he's not getting any treatment no IVIG, no meds, nothing...meanwhile he is just living with the buzzing in his legs, arms and the weakness...and it seams like no one wants to help...