February 26, 2009 at 2:09 pm
sorry no info
AnonymousFebruary 26, 2009 at 4:10 pm
In my experience, the first symptoms of what would eventually be diagnosed as CIDP began with lower back pain. I thought that I had ruptured a disk or some other strain, but the EMG and lumbar puncture concluded CIDP. Apparently, the demylination of the nerve that extends from my spinal cord through the lumbar vertebrae became so inflammed that it pressed up against the vertebrae, thereby causing the constant pain. This nerve extends down the buttock into the leg, so the pain gradually radiated down this path. Thankfully, this pain was substantially extiguished within 1-2 days of IVIG.
I hope this helps.
AnonymousFebruary 26, 2009 at 10:11 pm
Thank you for your response. So sorry your young son is going thru this at such a young age. As for my autonomic problems…its fainting when I go through the worse of the cramps/spasms in the legs at night. Of course the cardiologist I was sent to said it had to be from the pain I was going through with the legs so after I was put on a tilt table test & went down in 7 minutes, I was like well what explains that since I was not having cramps/spasms during the test!!! So of course no one has been able to explain that one so was just put on toprol for the fainting after being on a heart monitor for 1 month but the good side of going through the tilt table test was I then knew what the feeling was when I am getting ready to faint, always good sides to bad 🙂 I made sure this last visit with the nero after she told me what she thinks I have (CIDP) that I made sure she knew about my very positive tilt table test & she was like OH???? So not sure what she meant by that but I sure wanted her to be aware of it so maybe that would help shed some more light on my issues. I also do have bladder problems sometimes so who knows, its all so crazy & confusing & frustrating.
AnonymousFebruary 26, 2009 at 11:45 pm
Have you had an MRI of your spine?
My daughter Emily has lower back pain as well. She had a spinal MRI & it showed inflammation from her lower lumbar down.
Emily had autonomic nerve function also. She was 4 years old when she was dx’d & she had trouble with “dribbling” in her panties. She also has severe stomach pains that no one can figure out.
For the fainting…have they monitored your blood pressure & insulin levels? I don’t think I recall reading that CIDP makes a person faint..but hey, every CIDP’er is different.
AnonymousFebruary 27, 2009 at 4:32 pm
My goodness, my heart goes out to these young kids that are having these issues, such a hard thing for them. Yes, my insulin & BP are OK just when I get to faint the BP drops dangeously low & that is what takes me down so that is where the autonomic system is involved but hopefully I will know more after the spinal tap this Monday. Of course would love to hear right then & there but don’t know if that will happen but this doc is so wonderful she actually calls you herself with results, etc. which is not heard of very much anymore. Thank you
February 27, 2009 at 10:56 pm
sorry no info
AnonymousFebruary 28, 2009 at 12:21 am
I think they really did think it was a seizure because it happened 3 times 2 in the same night right after each other. Yes, they did do an eeg & every other test out there & the only thing that was positive was the tilt table test! Even the cardiologist wasn’t even in the room when I went down while on the tilt table because very few people if any ever faint that quick, the norm is 30-45 minutes! At least the only thing I am consistant at is having very weird things! 🙂 So I will just wait until the spinal on Monday & in the mean time I’m doing everything I can to totally ware out my legs which doesn’t take much so that whatever is going on will be as active as I can possibly make it. Crazy I know but I’m going to make the most of this test now that they think they know what it is, not that it will make a difference but I don’t know that it won’t either. Have a good night.
AnonymousFebruary 28, 2009 at 3:52 am
The most major problem I faced was intense lower back pain. I was put on morphine and two neurosurgeons said I needed immediate back surgery to fuse my spine, put in metal rods and I’d be laid up for almost one year. Then they said I’d need TWO back surgeries. The pain was radiating up and down my back/legs. Was dragging myself using 2 forearm crutches. I mentioned loss of my right arm and they were perplexed.One said he could fuse my neck.
By chance I went to a excellent neurologist for his opinion about surgery and he knew immediately I had a neuromuscular illness.
The back surgery would not have fixed one thing. The neurosurgeons had ordered dye MRI’s but no Nerve Conduction tests. They were surgeons and that’s what they knew.
IVIG after 12 months got my pain under reasonable control.
CIDP affects my diaphragm-I have difficulty taking full breaths. In summer heat it gets worse.
AnonymousFebruary 28, 2009 at 10:13 pm
My current new Mayo nero has already said she will most likely have to pass me over to a neuromuscular doc that is more familiar with CIDP if this is what I have & not normal MS. She has said she is not as knowledgable with CIDP as this other nero is. It would be so nice if I do eventually get on IVIG that it would help with the back pain also!
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January 23, 2009 at 5:53 pm
There is a variant called Miller Fisher that has to do with the eyes. My son has cidp, was initially dx w/gbs and yes we did wear a support on his ankles. Many with gbs wear afo’s as well. The time frame is individual for everyone and depends if there was axon damage or not. Good luck.
Dawn Kevies mom
AnonymousJanuary 23, 2009 at 8:08 pm
I have CIDP, the chronic longer lasting form of GBS and my feet/ankles would turn out and all of a sudden I’d realize that I’d be standing/walking on the side of my feet. This usually happened when I’d try to stand up from a sitting position. For me, it lasted for about a year and hasn’t happened again since. We’re like snowflakes though (gbs/cidp), all have the same thing but each of us is different. I never had to wear braces/AFO’S, sturdy ankle high boots worked for me.
AnonymousJanuary 23, 2009 at 9:19 pm
there are a number of us that have eye concerns associated with GBS–some with the eye muscles that move the eye–so that they see double and some with actual blurried vision. My neurologist says that you cannot have vision problems with GBS since vision is central, but, several of us have this. What can I say–it happens. There are more and more information about “central nervous system” overlap in “peripheral nervous system” illnesses.
WithHope for a cure of these diseases
AnonymousJanuary 24, 2009 at 6:08 pm
When I was hospitalized I evenually got bells palsy in both sides of my face and my eyes would not shut. we would put drops in constantly then put a gel lubricant on them so they would not dry out. and at night they would tape my eyes shut so i could sleep. I still have spasms in them. and have a real hard time focusing on things so takes me longer to read things cause cannot focus. that is more when I am really tired or just waking up and cannot seem to get them to focus. They still Testing me For MS all the tiime just never seem to get it all figured out. My eyes will water for no reason at all the tear can be clear down my chin before I even notice. People on the street will ask my what is wrong and if they can help me I tell them whoever is with me at the time just hit me and it hurt (ha ha ha ). I do have the Severe bone pain that everyone is saying that they getting the bone scan for. I think that I am going to suggest that to both my gp and my nuerologist to see.
It has been three years and all this eye stuff has been going off and on and not that big of an annoyance except when really want to read something and can get eyes adjusted lol…
AnonymousJanuary 25, 2009 at 3:57 am
I have CIDP but when I was in the hospital they thought I had GBS with the Miller Fisher Variant – I had a similar situation to nebraskafan except instead of my eyes watering they are chronically dry. I have had some improvement in the last three years but not nearly as much as with my legs and arms. I still get double vision and am very light sensitive etc. My face still droops when I am tired and I still have trouble chewing.
I also wear ankle braces – orthotics – and I only wear them when I need to walk long distances or stand for awhile. That has also improved in the last few years but some of the damage was axonal which has a harder time healing than myelin damage. It took a long time, month and years to notice improvement in either my arms and legs or my eyes and face… the improvement is slow but look back six months or so and you may see the difference. Three years ago I couldn’t even sit in a wheelchair, now I walk around my house without the braces. 🙂
AnonymousJanuary 27, 2009 at 2:30 pm
Problems with vision are pretty common with GBS, at least that is what I have found through the years talking to others who have had GBS. Usually people site weak eye movement and slow pupil dilation. i have also talked to people who had double vision.
GBS can affect the autonomic nervous system, which is a part of the peripheral nervous system, that controls some central nervous system functions, like heart rate, blood pressure and breathing. Most neurologists today understand that GBS does in fact affect the central nervous system in this way.
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AnonymousJuly 26, 2007 at 10:23 am
I have some new symptoms but not sure if it is related to my CIDP. I am had a bad cold when I had my last treatment July 12th. I am over the cold then got the stomach flue I don’t think it was a reaction to the IVIG cause the flue was making the rounds. I am now over both but am having some shortness of breath and tightness in my chest. I am wondering if the CIDP affects your lungs is it just all of a sudden and you can’t breath on your own or is it a gradual thing? I have not seen my doc yet I guess I put it of cause I am afraid they will say it is in my head. I guess I’m kind of chicken,I also guess in the back of my mind I worry about the cancer coming back. I think a person can become a nut case over all this stuff.
Thanks for any info you guy’s can offer.
AnonymousJuly 26, 2007 at 11:31 am
Peggy I think you should get it checked out. My ability to breathe declined from basically normal to basically nothing in about 48 hours. At any rate if you have had cancer it’s worth getting it checked out, who needs that in the mix?
Good luck and keep us posted…
AnonymousJuly 26, 2007 at 11:38 am
First let me say that I too have CIDP and after trying IVIG, Cellcept and now Methotrexate and getting sick with all of them, I relate to your feeling like you will be perceived as nutty. But first of all you have to listen to your body because you are the only one living with it. Second, it is the job of our doctors to listen to us and help us determine what is what. Just last month I was having flu and infection symptoms and afraid to go to the doctors because of how I would be perceived and then some very helpful people on this forum advised me and when I went to the doctors I did have an infection that was going untreated which was making me feel even worse. Then I went to my Neuro who confirmed many of my concerns and helped alleviate my concerns by simply listening and validating me. Two days ago I went to my Primary physician to fill her in on everything and asked her to become more informed about this condition because she has been admittedly in the dark about this diagnosis she became quite flip with me about my reported symptoms and recent experiences. She told me to push myself harder through the exhaustion and to “lighten up”. I am really distrurbed and feel like we should all be able to go to our physicians that we pay good money for and not feel belittled and dismissed. So I want to encourage you and myself to feel confident that any concerns we have we will take to our team of health care providers without any reservations. Sorry this is long, but I really want to eradicate this notion that we get that we are crazy for worrying and having valid concerns. I trust that the people here who are experiencing what we do will keep us in check if we are spinning out of control. Go to your doctor Peggy and voice your concerns. Be well and let us know how it goes.
AnonymousJuly 26, 2007 at 12:11 pm
I don’t think CIDP affects the lungs, per se, but it can affect the diaphragm, which is the muscle that controls breathing.
My breathing is definitely effected by CIDP. When I was first diagnosed and hospitalized for treatment, I was totally short of breath and couldn’t even stand putting on a bra–felt like it was squeezing my chest. Now, I can tell when the IVIG starts wearing off because I become short of breath more easily. I once had to sit down for like an hour and catch my breath after a trip to the grocery store.
Having said that, I’d also encourage you to see your doctor, especially since you recently had a cold, to rule out bronchial infection or any other of a number of things that can affect your ability to breathe.
AnonymousJuly 26, 2007 at 1:58 pm
Caryn is correct. It does affect your lungs and every muscle possible in your
body. When I went into the hospital because the Cellcept and Prednisone
were reacting terribly in my body, I woke up at 4:20 in the morning unable to
breathe. I couln’t even push the button to call a nurse. Thank God, a nurse
walked by and saw me gasping – code blue. It seemed within one second,
10 people came into my room with a crash cart. I later found out that the
lungs collapsed and was treated accordingly.
All muscles are connected by nerves, in CIDP, our immune system attacks the
white blood cells that feed the nerves. When the nerves are attacked, the
muscles weaken…it could affect a certain area or the whole body, depending
on the severity.
Please see that you get answers friom your doctors, or find new ones.
AnonymousJuly 26, 2007 at 8:01 pm
Peggy, Get Checked Out!!! you need to know what it is, or you will drive yourself nutts with worry. get a breathing test, blood work and go from there. cancer can come back, and that is nothing to wait on. cidp can have an affect on your chest wall muscles, your diaphram and your heart, so it is better if you get checked out. i have lung problems, if i feel something different going on i get to my pcp quickly, usually he says its not in your head its in your lungs:D and proceeds to encourage me to keep calling for any problems or new things that come along, with no problems personality wise from him. So, Go Get Checked Out, and let us know how it went. Take care.
AnonymousJuly 28, 2007 at 12:39 pm
Never worry about this being in your head! Make the doctors listen b/c we are the ones going thorugh this. As for the breathing issues, I went from a 1050 lung capacity to 850 in under 3 hours and then had to be intebated before an emergency set in. Don’t mess around with CIDP! It can go from bad to worse in seconds. The good thing is most doctors are willing to listen (although at first they told me my breathing issue was just anxiety) and modern medecine is wonderful!
Cheryl – CIDP 9/06
29, San Antonio TX
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AnonymousJuly 10, 2007 at 10:31 pm
Boy, I sure do understand your concerns with the bladder. When I have my
attacks from CIDP, my bladder is most definitely affected. I have to go to
the bathroom quite frequently, even after going 15 minutes earlier. At first,
I thought that I drank too many liquids, but I found out later, when in the hospital, that the bladder muscles do reflect the CIDP weakness. It was like
I had an incontience problem, which I don’t. When I had my IVIG, it was all
back to normal. My nose gets numb sometimes, but it usually clears in a day
In an issue of the CIDP/GBS newsletter, I read where, in a few cases, the
total body will go into myopathy. That depends, I guess, how severe your
attacks are. It surely isn’t pretty…is it?
AnonymousJuly 11, 2007 at 12:23 am
Peggy, Yes, and it only changed with my 1st paralysis event, before I had no problems. I am one of the lucky ones whos whole system shuts down during the paralysis relapses. From stomach to bladder/bowel. Timed voids are what I have to use for my stay at home relapses and in between when I’m having increased weakness. I haven’t gotten feeling back yet, so I can’t say if it comes and goes or what, but for me its gone, for both bladder and bowels. I’m use to it but its still a pain in the bum sometimes.;) My nose goes numb during weakness times also, but I still have decreased breathing thru it from the beginning. I can’t even take a shower without water going up my nose-not a good thing. I use a mask and snorkel when I swim, otherwise it gets really painful taking in pool water!:eek:
AnonymousJuly 12, 2007 at 9:50 am
CIDP has definitely affected my bladder. I’ve had many UTI’s since I was dx because I have don’t have the normal feeling of pain on urination, etc. I take cranberry pills every day to help but it didin’t prevent me from having a major one in May. While on vacation, I went into a coma-like state because I became hypoglycemic. Took 2 different drugs to cure the UTI. It’s a continual concern of mine…another way cidp has changed my life! 😉
AnonymousJuly 12, 2007 at 2:47 pm
CIDP can definitely affect the nerves of the autoimmune system (breathing, swallowing, bowels, bladder, etc.) although it’s rare. Be sure you talk to your doctor to ensure nothing else is going on. Also be aware that hormonal changes (particularly depending upon how old you are–at 52 this is something I’m dealing with at the moment;) ) can also cause bladder and bowel changes.
Regarding your nose, any peripheral nerves–sensory or motor–are fair game for CIDP. My nose, lips, tongue and cheeks have either been numb or tingling for several years, and my dentist commented that I appear to have bitten the inside of my cheek on several occasions. I replied that I only knew I had when I found blood.
I’ve asked my neuro to be on the look-out for a twenty-year-old who wanted to donate her entire body for transplant!
AnonymousJuly 25, 2007 at 7:03 am
I just back from seeing a Neurologist at Johns Hopkins and he said CIDP can DEFINATELY affect your autonomic nervous system, in fact it was one of the clues that made him come up with the diagnosis.
Here is a funny picture for you – patient on crutches recovering from peripheral nerve surgery, has leaky bladder – I ‘ve got a great idea! Let’s put her on steroids and watch her try to get to the bathroom in time!!! I only laugh about it now but it’s a messy and somewhat smelly problem and with any luck I won’t have to go on steroids again.
As for the facial numbness you can kind of tell where the nerve is damaged by what goes numb. Initially for me it was that kind of sneezy/tickly nose thing, then my cheek got numb, then my lips and my eyeball – now I know the damage spread up that nerve so that now the entire trigeminal (?) nerve is affected. So now my sense of taste is affected, my sense of smell, my ability to chew and of course the obvious facial drooping that makes people think I’ve had a stroke. Because my facial nerves are involved the neurologist recommended I see a dentist more often as I’m not likely to feel pain from a cavity.
Autonomically I also notice my blood pressure varies along with my pulse rate and although my intestines mostly behave themselves I’ve had to alter my diet and eat things that are easier to digest. I’m still waiting to lose weight from my healthy diet but hey… at least my bladder behaves most of the time now!
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