My doctor told me he thinks I have CIDP on 12-28-11. I have been reading a lot of post on this forum and my symptoms don’t seem to fit CIDP they seem to fit BFS more but my Nuero blow that off when I asked him.
I have a few questions that I can’t’ seem to find a answer to. Did anyone on the forum start out with muscle twitching that moved from one place to all over your body then got muscle weakness and then told they have CIDP? I have no more muscle weakness today than I did a year ago in fact I am probably stronger.
I know CIDP is different in every one but muscle twitching does not seem to be one of the primary symptoms. From what I read it seems to be pain or numbness then weakness is this correct ?
Did you have good days and bad ones or was it pretty much all downhill till the point you got treatment ?
It feels like the whole thing is some sick game of wait and see what happens. I made appointment with another nuero to see what he says but that’s not till the 23. I had to call 5 before I found one who treated CIDP before. If this Nuero is no help I am not sure what I will do the waiting is really warring me down. Maybe I will try and go to the University of Texas, Southwestern Medical School I keep reading they are the place to go if you have CIDP in my area. Problem is I don’t think I have CIDP from the info I have been able to gather.
Hi, I never had muscle treatment but I do have bad days and good ones. My muscle weakness got worse until i was diagnosed and over the last 13 years my muscle weakness hasnt got worse or better. From what I heard all the symptoms of cidp can start different with each person, thats why its hard to diagnosed but if you dont think you have it its good that your getting a second opinion, my doctor was only able to diagnose me because of a muscle under my lip which was hanging down lower then it should and he had seen it in another cidp patient, he was the only pediatric neurologist that was able to help. Hope I was able to help abit.
I am not a patient so don't know too too much (just help out here and at bensfriends.org), but Guillain-Barre is sometimes thought to be close to CIDP and in fact, we're about to launch a new community for it.
Yes! Believe it or not one day I woke up to take a bath and got stuck in the tub and couldn’t get out. I was paralyzed from the waste down. Twitching was a big part of problem and still is. After 6 months they said I had GBA then after the third hospital ( John Hopkins ) they told me CIDP. Let me know if you want to know more.
Can you tell more about how this all started with you? So far I have just Twitching but it has gotten alot worse. I can't really tell if its from me being so worried I am going to wake up paralyzed one day or from CIDP.
My doctor ran a eng test on my right side my leg showed signs of slow f-waves. Did your EMG show the same slow f-waves?
Last how is your treatment going and how long have you had CIDP?
But listen I,m not saying your going to wake up one day and be just like me. This just happened no one knows how, I really just woke up and couldn't walk anymore. But sometimes when i think about at the time I was REALLY STRESS OUT! and didn't know what to do so I don't know, My emg is horrible. Does it hurt when you get the emg? My treatment has OK it took a while to get here but i went from a wheel chair, walker, cane and now braces balance is my problem I have no mussel and terrible damage nerves in both legs. I'm down to getting IVIG 2 times each month 8 hours I take 600mg of lyrica and something i called the cancer pill Mycophenolate 1500mg Prednisone 80mg Hydromorphone 24mg Oxycontin 40mg so that's my treatment. I really been thinking about the stem cell surgery. Do you know anything about it.
My emg did not hurt at all really I kind of liked it. As far as the steam cell treatment Here is a blog of a woman that got it http://www.alicedicroce.com/ seems to have worked well for her. It is still in the testing so I am not sure how had it is to get in.
You join many that are frustrated with this neurological disease (if, in fact, you do have CIDP). If I were uncomfortable with my doctor, the care, or the diagnosis, I would seek another opinion. Perhaps others here can advise you.
My neurologist told me that CIDP is a "diagnosis of exclusion". Meaning that when everything else is ruled out, the diagnosis is made and treatment is recommended. The physical exam along with my history of symptoms plus EMG testing is one component. Then multiple trips to the lab for bloodwork gave him all the information he needed to decide that I did not have an easily treatable problem. Some folks with my symptoms have low Vitamin D or small amounts of heavy metals. Either of which is easy to identify and correct.
If your doctor did not tell you this, you might ask him/her or find someone else.
I imagine those on this forum know about as much about the symptoms and treatment as the average general practitioner because our's is such a rare disease. Therefore, seeking out an expert in the field is always a good idea.
I too have twitching in my lower extremities. The university based neurologist I saw for a second opinion coupled this symptom, twitching (medically know as 'fasciculations') with my other symptoms and hinted that I might have Lou Gehrig's disease. ALS (amyotrophic lateral sclerosis) is progressive and usually deadly. Fortunately, she was wrong since my disease has not progressed since starting the IVIG. So, using one symptom to make a diagnosis can be misleading.
To your last point of wait and see. I have been on IVIG for 19 months. And, I still don't feel any different but I am no worse. And for that, I am indeed thankful.
I really think with all that's been said you would know if you had it cause it hurts and you lose parts of your body. You need a good doctor. JOHN HOPKINS is great. I CAN'T speak like others or for others like (Jast) all doctor like but i can tell you that it's no joke the last three years of my life have been touchier. Sorry!
Hi Jast, I read a little about BFS because I had no idea what it was. i knw people say CIDP is hard to diagnose and I think it can be in certain people, but maybe it is also the doctor. i has EMG of upper & lower extremities and my dr still kept trying to “rule out everything else” and then see what was left. He kept telling me my EMG results were exactly like diabetic neuropathy. After 4 months, he gave me the phone number for a dr in Manhattan and basically send " see ya". I was so pset but found a new doctor who only treats MS. She did MRIs and spinal tap to rule out MS, then sent me to her partner, whom she said was the best at EMG tests. She shocked me a few times and said “you have CIDP”. I knew I had it because the symptoms fit so perfectly. She said I was a text book case and easy to diagnose. I don’t why the other dr couldn’t but maybe he hasn’t seen it enough. So my advice too, is get a neurologist whoonly treats CIDP and I think they will know. i think you have to show demylination on three nerves and then something else determined during the EMG. If they do the EMG and they cannot see demylinatio, thenyou don’t have CIDP. My dr told me when they do the needle paert and the macine does a steady dadadadadadada when the muscle flexes…that means demylination. I don’t think that BFS would show any nerve damage on EMG. The MGis key and having it done by a dr wokow his/her stuff. Good luck
Thank you for the info guys. I am still getting worse last Saturday my right leg, hand would start to shack if there was any stress on it long then a few seconds its seems to be ok but it was scary. I am also starting to get pins and needles feeling in my hands and feet off in on. And it's taking long to recover from my work outs and I just don’t feel right.
My doctor took me from 20 mg to 50 mg of prednisone “ I have been on it for 2 days now” and is now talking to my insurance about getting IVIG, he says I will hear something by Monday. I know IVIG cost a lot and I am kind of worried I will not be able to afford it. My major medical kicks in after $5000 but my drug copay is 80/20 even at 20% that will empty my savings pretty fast. The 2nd doctor wants to do a MRI of my back and he seems to think it may not be CIDP he did not rule out CIDP he just said usually its more aggressive then it has been in me if that’s what it is. I am not sure what to do try IVIG and pay for that or pay for more test and hope they find something cheap to treat.
I read with CIDP 40% use prednisone 40% use IVIG and 20% use Plasma are there any other drugs that can be used in case I can't get or affored IVIG that are better then prednisone?
Hi Jast, did your EMG show demylination of the nerves? Without that dx, there is no CIDP. i think Prednisone is probaly the cheapest drug out there but not sure if a dr shoukd put you on it when he’s not sure what you have. There are many side effects and you have to be weaned off of it so you can’t just stop.please be sure dr keeps checking your blood sugar and your blood pressure. They can both be affected by prednisone.
I have had muscle twitching (fasciculations) since the early days of my CIDP diagnosis. My weakness increases gradually up until my IVIG infusion. 4-5 days after IVIG, I am at my best. If I get the flu that will definitely result in me having a bad few days. So, I have always gotten a flu shot.
In my opinion, big city teaching hospitals are your best bet for a good diagnosis. I know from experience. Neurology is quite complicated. A teaching hospital with a big neurology department is the way to go.
If you are not getting weak, that is great and suggests that whatever you have may not be doing much damage. In my case, I had mild symptoms for maybe 10 years before I needed treatment. 14 years later, I am still quite functional. I encourage you to go to the big hospital. It should benefit your health and give you peace of mind.
I go to UTSouthwestern for my eye, but when I called to get an appontment about my CIDP, I was told the first opening was 8/31/12 at 9am. AND THIS WAS in January!! I am seeing a dr at Texas Neurology near Baylor Dallas and he treats about 100 CIDP patienets. Just starting down this road....
I just wanted to correct something, as CIDP is NOT a diagnosis of exclusion. There are specific tests to test for and confirm CIDP.
I have one of the drs from the "7 Centers of Excellence in the Diagnosis & Treatment of CIDP" IN THE WORLD. They would definitely not agree that CIDP is only exclusion based. I had very clear cut symptoms of CIDP with my first paralysis episode.
I have been on IVIG about 8 years now. Probably going to go to plasmaphresis shortly.
Someone asked about twitching. I did not develop twitching until about 5 years into the disease. It has been increasing steadily for the past one year. It includes twitching and jerking and is very bothersome when at rest. It does not happen (as in most all cases) with movement.
Best wishes to you all!
JMichaelS said:
Jast,
You join many that are frustrated with this neurological disease (if, in fact, you do have CIDP). If I were uncomfortable with my doctor, the care, or the diagnosis, I would seek another opinion. Perhaps others here can advise you.
My neurologist told me that CIDP is a "diagnosis of exclusion". Meaning that when everything else is ruled out, the diagnosis is made and treatment is recommended. The physical exam along with my history of symptoms plus EMG testing is one component. Then multiple trips to the lab for bloodwork gave him all the information he needed to decide that I did not have an easily treatable problem. Some folks with my symptoms have low Vitamin D or small amounts of heavy metals. Either of which is easy to identify and correct.
If your doctor did not tell you this, you might ask him/her or find someone else.
I imagine those on this forum know about as much about the symptoms and treatment as the average general practitioner because our's is such a rare disease. Therefore, seeking out an expert in the field is always a good idea.
I too have twitching in my lower extremities. The university based neurologist I saw for a second opinion coupled this symptom, twitching (medically know as 'fasciculations') with my other symptoms and hinted that I might have Lou Gehrig's disease. ALS (amyotrophic lateral sclerosis) is progressive and usually deadly. Fortunately, she was wrong since my disease has not progressed since starting the IVIG. So, using one symptom to make a diagnosis can be misleading.
To your last point of wait and see. I have been on IVIG for 19 months. And, I still don't feel any different but I am no worse. And for that, I am indeed thankful.
Hi Jenny G, I am sure we would all love even five minutes to pick your dr’s brain and your brain. May I ask why you are switching from IVIg to plasmapheresis? Is the IVIg no lomger working? I have had CIDP about seven months and I have twitching also. My husband hates it! I din’t have limbs that twitch, but my entire body twitches. I went to a renowned MS dr after my first neuro failed to Dx me. She began with MRI tests to check for lesions or abscence of so she could rule out MS. She also wanted her collegue, who sees only CIDP patients, to repeat my EMG. Five minutes into test, she Dx CIDP. Would you agree that where CIDP is not so clear cut, drs do have to exclude certain similar illnesses like ALS & MS? Jo
Hello, I can understand your frustration. CIDP is really hard to diagnose , as you said it us different in everyone. I go to UT Southwestern and see Dr Muppidi. I moved a year and a half ago from AL. I had been previously diagnosed. Once I started seeing Muppidi he ran me thru a million different tests to make sure it was in fact CIDP, which was hard…but I was happy to make sure that we were treating the right disease. I have numbness, twitches, pain…you name it. Finding a Nuero that is familiar with this is key ,goodluck
I have had CIDP since 2005 but wasn't diagnosed until 2009. I have muscle twitching which has only recently become noticeable, I hate it terrible, this must be what Parkinsons starts out like. I am in Australia so I can't advise you where to go for the best treatment but others here will know I'm sure. Weakness, burning pain, pins and needles are all symptoms. It started off slowly with me and I was only noticing the pins and needles and difficulty doing fine work with my hands. Mine has progressed to burning pain in my feet legs amd also numbness in my hands. I drop things all the time, darn nuisance. I do have good and bad days, especially when it is hot. Another problem I have is night blindness. I can't walk around in the dark I fall over. Everyone is different with CIDP, some don't progress and stay the same, some get better with treatment and some progress even with treatment. I have fortnightly infusions of IVIG and take a truck load of medication. I am still mobile and can do most things but have very little energy and find many tasks very difficult. The sooner you can get treatment the better chance you have of gettting better rather than going down hill. I know from reading here that some places are trialing stem cell replacement as treatment which in some has completely cured them. This may be worth looking into. CIDP is very hard to diagnose and just because you don't have the primary symptoms doesn't mean you don't have it. What sort of tests have you had? If you do have it I can't stress enough that you get started on treatment ASAP before this rotten condition gets a real grip on your body, it is awful. Good luck!
Just FYI…I researched stem cell replacement trial being done @ North Western in Boston. The results will be out in 2014. oThey will do the experimental procedure if all other treatments have failed. I read that if your insurance pays, it will cost them over $300,000. If insurance will not cover, it will cost you personally $100,000 just for the surgery. That dies NOT include the 3 month necessary hospital stay or the extensive chemo treatments that knock out your immune system. I think it will cost about $140,000 total. I don’t know about you guys, but that is so far out of my reach, it might as well be offered on the moon. One woman who had it was a San Francisco police officer and they held fund raisers for her to help cover the costs. She has been doing well for over a year. It’s fascinating because it can really offer a cure! I believe she is now suing the police department and the insurance company. I hope she wins.
I read about the woman in San Francisco, she was so lucky that they raised the money for her. I can't remember where I read about a trial that is currently underway, I have a terrible memory. If there are trials in the USA do you still have to pay for it or will they accept you if you fit their criteria for the trial and not have to pay for the treatment? I live in Australia so I am not really up with it as far as expenses go. Our system is different but there is no research for stem cell replacement here so I am clueless. It is amazing that she is cured! How good what that be, gosh wish it was me!