Normal some days and symptoms on other days CIDP

General General CIDP Discussion
1

Hi,

I was diagnosed with CIDP in November 2010. I have had a pretty mild case in comparison to others. It started about 10 days after I received the H1N1 vaccine. My right foot went numb for no reason. I just thought I pulled a nerve or something. But my foot got worse and pain came, then my other foot started to tingle, then my hands started to drop things for no reason and I felt off balance when standing still. Anyway, I was diagnosed pretty quickly (by February 2011) and started IVIG by April 2011. So since starting IVIG I have stopped progressing and most of my symptoms have gotten a lot better. But what scares me and I don't know if this is normal or not. I get IVIG 40 grams every 21 days. But mid- treatment sometimes my symptoms come back or seem worse for a few days for no reason. I get very anxious and scared but then they disappear over night sometimes and then reappear a few days later. Nothing horrible, just some mild burning in the tops of my hands (had this in the beginning only much worse), sometimes I get creepy-crawly feelings in my feet during the day and always at night mostly. Also I feel weak in the knees some days but other days fine. Can CIDP symptoms come and go on and off like this? I don't seem to be getting any worse but the symptoms are worrisome to me and cause anxiety and trouble sleeping. I don't know if the on and off thing is telling me my CIDP is progressing and getting worse and the IVIG isn't working anymore or if this can be completely normal in living with CIDP. Should i call my doctor or just wait it out. Every time I call the doctor i feel better in a day or two and feel stupid for calling. How will I know if I am getting worse and would need to think of other treatment other than IVIG? I was so hoping just to go along with my life as normal as possible just giving up one day a month for treatment. For the past year I was doing so good that I though I can handle this. But the anxiety takes over and I get scared I will end up disabled and in pain. Do people live with CIDP for many, many years on IVIG and never get worse? Is that possible? Do these people have mild symptoms daily like I seem to be experiencing? Gosh, I sometimes think the worst part of this disease for me is the not knowing what to expect or how I will be when I am older. I feel scard that my dreams of retiring and living a nice retirement in Florida with my husband are just dreams now and will never occur. I fear I will be a burdon in my old age now and not easy going and healthy... I have always been very healthy before CIPD. This is so hard for me.

2

I know how you feel, I also have what seems to be a mild case of CIDP “ you’re is worse than mine”. I have been on corticosteroids for 3 months now and I have not lost any strength. But my muscle twitting has moved to both legs and arms. My left hand fills stiff, and my left leg is really sore. I am also very anxious the not knowing how this is going to affect me later in life and worrying about every tingle, twitch or pain is warring me out and making everything worse. All the worrying may be what is causing my other problems “and yours” don't underestimate how much your state of mind can affect your body.

We both need to calm down being this stressed out can't be good. I am not sure how to do it but I keep telling myself " as long as you don’t have real weakness your fine" I can still go to the gym and work out. I life more weight than I did when I was told I have CIDP. I can do everything I want to or need to fine my life is normal. I have also not seen one post or seen any info of someone dying from CIDP.

Bottom line all this worrying is not helping it is just making it worse. I bet there are lots of people with CIDP that never come to this forums or any other because they are fine and living there life. I see my doctor every 3 months so he can check on me maybe you can do the same.

Also just a quick question on your EMG did it note that you had SLOW or ABNORMAL F-WAVES? Mine did and it seems like every one with CIDP shears this at least with the info I have found.

3


Hi Jason,

Yes, my EMG/NCS showed slow F wave in both legs and arms. I don't have any muscle weakness yet or loss of reflexes either. Mostly just some creepy-crawly feelings after work outs or long days on my legs. My hands sometimes feel clumsey and slow. But most days they feel normal except for a mild burning on the tops. Lately the weak knees have been giving me anxiety but not losing any strength or balance so i have not notified my neurologist just yet. I don't want to make any waves that would make them think to switch me from IVIG to pred or cancer drugs. I did pred and will NEVER go back on that horrible stuff! So I guess unless I seem to lose strength or get worse I need to find a way not to think about every little symptom and go about my life. It is hard. I try to breathe deep and focus on something other than the symptoms and meditate for a few minutes to calm myself down. Sometimes it works and I feel better but sometimes I get the horrible anxious feeling that something is horribly wrong and I feel sick to my stomach (I know it is anxiety as it passes when I calm down). Thanks for your post. I feel better knowing others don't progress to disability and i could coast through life with my disease staying where it is at.

4

Hi Chirpy, what is your name? mine is Joann or Jo. i have had CIDP for, I think on and off, about 2 years. I had some mild numbness in my feet on and off and then about six mnths ago, my symptoms just kept progressing. I wasted some months having tests with a neuro who wasn’t familiar with CIDP or it wasn’t showing up then on the tests. My spinal fluid was normal but I had researched my symptoms so much and KNEW when i read CIDP that it was what I had. I went to a new doctor at Stony Brook hospital where I live on Long Island and she said she had to redo both MG tests on my upper and lower extremities. I was upset because, as you know, IT HURTS and the numbness doesn’t seem to help. I am 47 years old and my husband is 37. I am in no way a “cougar”, God I hate that term, but have always taken good care of myself. No shots in my face or lips or any of that stuff, but worked out, watched what I ate etc. I have had Crohns disease since my twenties so I am very familiar with prednisone and was on it once for 18 months and weighed 200 pounds from 110. I thought the Crohns would always be my battle to fight. Now, I have this one too. My dr thinks that I got CIDP because had 3 surgeries this year (1 gyno,2for crohns) and was having a lot of stress on my immune system, which apparently malfunctions. After losing a baby, we were not able to have children. But I have the love of my life and 2 furry children I adore so I am truly blessed. So that’s my story. Now to yours, my new friend.

I cried my eyes out while reading your post because I have every single fear that you have. I wish I could help more with information about how I feel after IVIg but I haven’t started yet. I will keep in touch and let you know how it goes. I have thought about all the same things as you. I admit to you that I have had suicidal thoughts in the past so my husband can have a better life without me. But I realized that if he were sick, he would NEVER be a burden to me. I would want to be with him and love him through whatever comes. Trust me, your husband feels the same way.

My symptoms are worse than yours but I am sure there are people out there worse than me. I could tell you stuff that would make you feel better for the moment, but I’m not going to do that. I will tell you the facts as I researched them. I know that most people respond well to IVIg treatment. My new dr treats only people with CIDP and she told me that with IVIg every day for five days and then 2x a week every three weeks for 6 months, I could go into remission for years, if not forever. She said I have to do it for 6 months, even if my symptoms are gone after after a month. When she said that it was possible, I decided that WILL BE ME. I WILL go into remission for a long time, if not forever.

I think you need to concentrate on one thing: GETTING WELL. You need to tell your doctor everything you are feeling because while it may just all be normal, it may mean that the treatments are not frequent enough. You may need to add another treatment every 3 weeks and you won’t feel any of the stuff you are feeling. You don’t want to do this half way right? You want to do it ALL the way. If you need prednisone added, IT SUCKS but it’s only a temporary battle and could be the one weapon you need to win the war.

You probably think I’m nuts. Maybe I am. I am weak and scared all the time. I compare it to training for a marathon, only you are trainig your mind instead of your body. You are going to be out of breath when you first start training. But you will get better and better at it. Soon, your mind will be strong enough to push those thoughts away. The one thing I try not to do is ruin the times I feel good worrying about the times I won’t. You know that saying “fake it til you make it” is so true. You fake being happy and whenyou are doing it, you stq feeling happy because you want it so much. I can two things from your post: you are a strong woman and you love our life. That means you really want to get well. I will talk to you any time. My email is ■■■■■■■■■■■■■■■■■■■■■ if you want to write. Please, talk to your doctor. Breathe. Ask your doctor for some anti-anxiety meds if you need them. And then, keep fighting. I believe you are getting well. I think your immne system is fighting back and you may need stronger meds…or our dr may say what you are feeling is very common. You are right…not knowing is the worst feeling. Know this: you are not alone. Jo

5

Hi,

I don't have a lot to add to these other great replies. But, I have had CIDP for over 20 years and I have experienced the ups and downs that you're talking about. Every case of CIDP is different - please always remember that when considering info or advice from other patients. I usually have random symptoms when I'm getting better - usually after an IVIG or plasmapheresis treatment. I usually know I'm getting worse when it's very gradual and progressive. I still have the same feelings of anxiety any time I detect tingling or numbness, but I try to look at it over days or weeks and not react too much to how I feel at any given minute. I'm not a medical person, but I think our disease process is based on myelin coatings dissolving off the nerves and then regrowing. I think the effect of demyelination is gradual and the re-myelination is more random and the gaps in the myelin as it re-grows can cause shorts in the nerves that cause random symptoms. Not a medical opinion by a long shot, but my way of thinking of it.

I also think the longer you are on a stable treatment, the less likely you are to have random symptoms. I've begun to think of it as strong years and weak years rather than weeks or months. My symptoms generally aren't too bad - probably a lot like many of yours. I can run and do most anything I want. My challenge now as I approach retirement age is trying to figure out if little symptoms are part of my CIDP or just normal aging. But, I guess I'm blessed because I don't feel like I'm slowing down any faster than any of my friends the same age.

Hope this is an encouraging note for you. Based on my experience, you will get to know your symptoms over the years and it will get easier to figure out when to call the Dr. and when to wait. Best of luck,

tom

6

Hi Tom V, sometimes it really scares me when I read that people are going to the gym, ru ning and things like that. I am in really bad shape: can barely walk, even with a cane, right arm/hand so weakI can’t use it for much, I have such severe nerve pain in my back and hip that I am on pain meds all day to keep myself from screaming. I have not had any treatment yet except for Lyrica. Should I be excited when I read your post that you are able to run after 20 yearsof CIDP with treatment, or were you not as far gone as I am? I am anxious to know what I can expect from treatment since my disease seems to have progressed further than most.I know everyone is different, but I want to know if anyone was ever this bad and if their symptoms completely reversed to the point they could actually run again?

7

Hi Doggymama,

Really good questions and I understand where you're coming from. I was diagnosed in 1990 and spent about 4 months in the hospital that year and a lot of time in a wheel chair. During the 1990's, I left the military and then had to leave the classroom due to my inability to handle the physical part of the job. I had a lot of fatigue and was trying lots of treatments - plasmapheresis, imuran, prednisone, poly ICLC and IVIG. Two decades later, I have been on IVIG monthly and am much more stable. The last 6 or 7 years have been the strongest of my fight. I don't mean to suggest that it will take you 15 years - medicine has come a long way since I was first diagnosed. You also sound much more aggressive than I was, which is good and absolutely necessary for good treatment.

My main message is that everyone's CIDP is a little different, but there is great hope for improvement. You will grow to understand yourself and your disease better and things will become more manageable. Hang in there and I pray that you will find the treatment that works for you.

tom

8

Hi Chirpy!

Well, I hate CIDP, FYI, and for many of the same reasons you state. My thing is, who do I turn to? I was dx with MS for four years. Or was I? Do I have both? I definately have CIDP. Like you, I have no idea when to call the Doc. I just call him and have decided if he has a problem, I cannot help it. Mostly, though, my calls are after IVIG. I have what seems to be a lot of side affects from IVIG and if the weekend is loom. he may as well check in, I am a calling.

The Dr. was going to try something new w me. I get a fever, can go to 102.5, and the flu like things, pretty badly. They are lasting longer and longer. I have gotten moles or warts on my arms, a rash on my back, that blasted headache for days, etc. Yes, I pretreat and hydrate, and it does help. They treat me every two weeks. One infusion every two weeks now. I have been having treatments for almost a year, five in a row, once a day, at first, waited a month, then four in a row, then two and now one. Regardless of how many, side effects are the same. Dr. explained it had nothing to do with the amount of medicine, but the medicine per se. However he is lowering the dose for the next one, uh, so???? We did try Solumed, and NEVER AGAIN for me. I was infused three days in a row, 1000 mls in one hour each day and I will never do that again. It is just prednisone in a horribly high dose that made me insane(r).

So, your synptoms, yes, I have them too. I tried to make note this time, before I went in, as to how I felt regarding my extemities, the tingling and buzzing. My hands had NONE, nor did my arms or legs. Afterward, all did. My Dr. says it may be the nerves trying to heal. My problem with all that is the "maybe". Before I started IVIG, I had absolutely NO tingling, buzzing and little to no numbness in my hands. Now, I have all. My legs and feet were the targets and since treatements they actually worsened. The good part was that I was unable to life my feet and IVIG allowed me to be able to do that, to climb stairs. But, if I lose that again, what else have I sacrificed at the same time? Also, I have what appears to be permanent numbnes now in at least two thirds of my right foot and a fourth of my left. But, for what it is worth, with the love and care of my patient spouse, I wore heeled boots Christmas, and New years (our anniversary), and had a couple drinks ahem. So, I must be better.

Here is my question for you guys too..... Do ANY of you have an emotional response to IVIG? Does it cause you to ruminate and get despondent or depressed? It seems to have a really deeply hugely bad affect on me. I would love to know if any of you have that. Also, my eyesight is really not great...along with finger dexterity, your congnition is being challenged to read this, I have no doubt....GO POLYNEUROPATHY!! Happy Fingers???? (cheerleader reference)

Love and long suffering and well, p oedness....Jan

9

Oh, I love hearing the others talk about this, especially the longer dxed ones. I forgot some "stuff".

I have lost all my reflexes, I have none left in my arms, hands, legs, feets. The loss of them is what put the neuro on this path: "what disorder would destroy all of a person's reflexes?" Aha! And, so here I am. Also have a brain tumor in my brain stem, in the mid brain area, next to the hydrocephalus drain, and when they did a lumbar punch, my protein was 123. So, CIDP makes you have high protein, but so does a brain tumor. NOTHING in my dx has come easy or has been easy to treat. I can laugh and snort and carry on, but I am pretty upset "inside".

Also, my digestive tract is horrible. I have been in the hospital two times, ten days each, before I was dxed with CIDP, passing only blood. First time, ischemic colitis. They did a culture and it was a solid dx. But you cannot look into the colon when someone has this, part of the colon has effectively died. You may tear it. So, they did a biopy with the sigmoid thingy and confirmed this. I was lucky, the colon rejuvenated. Ischemic colitis is like a heart attack in the colon. The second time, random colitis, I suppose, although I was never told. To use the bathroom, for me, is this side of horror. It can take hours and screams. Unpleasant subject but necessary as my medical dr. says it is his belief that the nerve conduction in my digestive tract has been altered permanently. These issues date back for a long time.

One of my greatest fears is losing the ability to go, and ending up with a colostomy.

10

ChirpyBirdy, this is for you and for all of us: I am not especially religious but My in-laws bought me a bedside book called “Jesus Calling” that is a devotion a day book. The inscription from them reads, “We pray this book can provide you with hope and peace”. I read it every day. Today’s reading grabbed me and shook me, and I wanted to share it with any of my friends who may fear the future as I do: “My face is shining upon you, beaming out peace that transcends understanding. You are surrounded by a sea of problems, but you are face to Face with Me, your Peace. As long as you focus on Me, you are safe. If you gaze too long at the myriad problems around you, you will sink under the weight of your burdens. When you start to sink, simply call out “help me, Jesus!” and I will lift you up. The closer you live to Me, the safer you are. Circumstances around you are undulating, and there are treacherous looking waves in the distance. FIX YOUR EYES ON ME, the One who never changes. By the time those waves reach you, they will have shrunk to proportions of My design. I am always beside you, helping you face TODAY’S waves. THE FUTURE IS A PHANTOM, SEEKING TO SPOOK YOU. LAUGH AT THE FUTURE! STAY CLOSE TO ME” Philippians 4:7; Matthew 14:30; Hebrews 12:2

11

Hi Everyone, I was feeling quite bad over the weekend so I called my doctor. Of course it really did not help me at all. I just got the response from his nurse... If the symptoms you are experiencing don't seem like your normal CIDP symptoms, then the doctor recommends going to an emergency room. Or if the symptoms are what you would describe as normal for you, then wait until your cold passes and then bump up your IVIG as soon as you can. Well, I was not bad enough in my mind to hype out and go to an emergency room. So I guess I just waited out the symptoms and hoped they got better. And they did. Today, Monday, I am feeling almost normal again today 'yeah'. But I did not know this. My nurse told me that whenever I get sick, cold, flu, you name it, my immune system will go into fight mode to fight off the infection. It will also make my CIDP flare up as the bad antibodies will start the attack on my nerves again usually when I get sick. So we think maybe that is what was going on. I was fighting a cold all last week. The new symptoms started about when I came down with the cold. Now that the cold is gone my symptoms have leveled out again. Now I won't get so freaked out next time. I wish I had known this as it would have saved me much anxiety.

12

hello Chirpybirdy,

I was sent to a nuro doctor and in Aug of 2011 he did lots of MRI's on me and EMG....he then told me and my husband I have; Severe Sensory Polyneuropathy. I never heard of it before. I have problems like feeling here and there anot anot feeling here and there. Mostly on my left side of my body...at first they thought it was because of Diabetes which I was just dianoze with in June 2011. And I'm mild so far.

Well, my newest doctor nuro doctor thought I couldn't move my toes because of my knee, then after the EMG and all the MRI's he didn't talk about my knee any more.

I ask my Nuro and my family doctor about these IVIG you all seem to gt and neighter of them knew what it was your having done. Really.

Only med's my Nuro doctor try me on was at first 300mg of Gab. And I had a bad reaction I couldn't see well everything was blurry. Then they thought next it was too high to start at...so they gave me 1oomg of the GAB. (mis spelling) anyway I had the same reaction. So then my Nuro try me on Lyrica and I learn that Lyrica is stronger then the GAB even though I was on the lowest doze. weird I know.

What now nothing I have Hydrocodone 7.5 and take them. I have weird pain...most of it is numbness which doesn't give me pain until I use my legs to walk to much. Or whatever mostly get leg cramps.

I had for years and no one notice or the doctors just enor it when they hit my knee for reaction never had one...weird there too.

Well what is now I am scared I don't know for sure if this Nuro doctor who just last week drop me said he couldn't help me any more. And now I have no nuro doctor. My family doctor doesn't know nothing about this poly thing...he even calls it poly thing...and he kind of laughs a little at me. thinking I guess he don't believe it?

Oh well.........My plumb (lung) doctor who I see for my copd said he is worry about how it is effecting my lungs. And I will be in real pain as I go along with this Polyneruopathy....My lung doctor seems to be only one on my side so to speak....wanted me to go to our Barrows Nuro Hopsital for help....My lung doctor in Dec wrote a letter to my family doctor telling him to send me there.

My family doctor gave me a refferal to another Nuro doctor and said he can go to Barrows...but that isn't what my lung doctor wants done. He is mad....I saw him last week as well...he is making me come in sooner because he wants to know what my doctor is doing....or not.

Now my lung doctor tells me to find a new family doctor if he won't give me a refferal to Barrows.....well after going back and forth with my family doctor on Friday he gave me one he called it an ER right now refferal...to Barrows.

So now I have it in hand....and I am going to call or try to see if anyone is there today....this is a holiday for some people.

But as for pills I am not on really anything you all on.

I have this numbness in both of my leggs and I have drop foot on the left foot....I have no feeling in my sides of face and my left hand wont' stop hurting and I have trouble holding things now....I broke my thumb 4 months ago...and I reinjured it again at Xmas time...it's not broken....just has this deep pain and it is weird because I have to wear a brace we got at wal mart to make it a little better.

I have problems with my bowls....I go thru like Crohn's diease....except no one has said anything about it...yes I told my family doctor ages ago....I even had those scopes both thru my mouth and the other end ...sorry I for got what the treatment is call...bad memory right now...anyway

I am not sure what is really going on with my body....I have cane, I have now a scooter since my ex nuro doctor said i can't fall down any more....so I try not too. I am on Medicade until this summer when my 24 month waiting ped. is up....I lost my job working because of the oxygen tank for my copd I have now.

But for all the problems I have I don't understand why me?

I don't understand any of it.

I am scared, I don't know what is next going to go wrong with my body?

I have several other illnesses and I am already just retired early at 62.

I have all your concerns and more.....I do pray all the time....

I was always taught not to ask for things for yourself, but ask for others....I do that...but lately I do ask God for help.

I have probably mild I don't know too much except what I have try to look up. I don't know if this is a for sure thing....? I feel like I have different things going besides all you have here....

I hope I get the correct treatment and see a doctor that does understand what is going on with my body?

I have a heart stint and now my blood pressure is up higher.....maybe stress? I don't think it is all stress.

I do have panic attacks I control them by med's now...

I had skin cancer but not bad one....they seem to come each year and the doctor digs them out.

I had problems with eyes....can't spell what I have I'll give it a try....glocoma in both eyes and they drill holes so I wouldn't go blind

I have arthirts all over my hips hurt the worse my knees and ankles will just let loose and I fall without much warning.

I don't know what I did so bad to have so many problems....

I realize and grab a hold there is someone worse then me......infact it may sound bad...but it helps to know by reading the posts here and listening to others that if someone is worse then me Ihave a chance i think?

bad or not....I am scared is all

what is next?

for any of us?

ruthie

13

Hi CB, wish I knew ur name. Oh how well we all know the agony of NOT KNOWING. I think if the medical field has one HUGE failure it is one of communication. Theybare all terrible communicators. If you are lucky, you get a dr or nurse who has been where we are and they go oit of their way to help, bit 99 percent of them, just want to get back to their beer or their kids or whatever. On a positive note, now you know that CIDP will act up when you have any sort of health issue. I so appreciate the post, because now I know it too. I am grateful you are feeling better. I wish I could have supplied an answer but I have not had IVIg yet. Obviously, Empire thinks it is fine to take their sweet time while more of my parts fo numb. Ah, so great to xomplain to people who actually GET IT! Jo



chirpybirdy said:

Hi Everyone, I was feeling quite bad over the weekend so I called my doctor. Of course it really did not help me at all. I just got the response from his nurse… If the symptoms you are experiencing don’t seem like your normal CIDP symptoms, then the doctor recommends going to an emergency room. Or if the symptoms are what you would describe as normal for you, then wait until your cold passes and then bump up your IVIG as soon as you can. Well, I was not bad enough in my mind to hype out and go to an emergency room. So I guess I just waited out the symptoms and hoped they got better. And they did. Today, Monday, I am feeling almost normal again today ‘yeah’. But I did not know this. My nurse told me that whenever I get sick, cold, flu, you name it, my immune system will go into fight mode to fight off the infection. It will also make my CIDP flare up as the bad antibodies will start the attack on my nerves again usually when I get sick. So we think maybe that is what was going on. I was fighting a cold all last week. The new symptoms started about when I came down with the cold. Now that the cold is gone my symptoms have leveled out again. Now I won’t get so freaked out next time. I wish I had known this as it would have saved me much anxiety.

14



Doggymama said:

Hi CB, wish I knew ur name. Oh how well we all know the agony of NOT KNOWING. I think if the medical field has one HUGE failure it is one of communication. Theybare all terrible communicators. If you are lucky, you get a dr or nurse who has been where we are and they go oit of their way to help, bit 99 percent of them, just want to get back to their beer or their kids or whatever. On a positive note, now you know that CIDP will act up when you have any sort of health issue. I so appreciate the post, because now I know it too. I am grateful you are feeling better. I wish I could have supplied an answer but I have not had IVIg yet. Obviously, Empire thinks it is fine to take their sweet time while more of my parts fo numb. Ah, so great to xomplain to people who actually GET IT! Jo

Agreed Jo and to add to that, when I try to ask for the name of the manufacturer and or what it is mixed with, they look at me like I have two heads. I have NO recourse there. Whatever they bring to my room, I have to take. They have no patience or concern. My only input is I control how fast they infuse me and I have made then do in over ten hours if a headache started. So, that is my only control here in NC at Wake Forest Medical Center. I read where there are different brands, some ppl tolerate some better than others, that we tolerate it being mixed with this better than that, etc. I have no choice.
15

Its like looking in a mirror !..Your symptoms seems very close to mine, not too bad and I can lead a mostly normal life, but last weekend I had a bit of a sore throat and no prb, that soon passed and then it happens !..a real bout of bad muscle pain and Im off work for 5 days...Its now nearly always a minor cold that starts the symptoms so i try very hard to avoid them..if thats even possible !

Your thoughts on the bad antibodies attacking are EXACTLY what Ive been thinking too !

Andy

chirpybirdy said:

Hi Everyone, I was feeling quite bad over the weekend so I called my doctor. Of course it really did not help me at all. I just got the response from his nurse... If the symptoms you are experiencing don't seem like your normal CIDP symptoms, then the doctor recommends going to an emergency room. Or if the symptoms are what you would describe as normal for you, then wait until your cold passes and then bump up your IVIG as soon as you can. Well, I was not bad enough in my mind to hype out and go to an emergency room. So I guess I just waited out the symptoms and hoped they got better. And they did. Today, Monday, I am feeling almost normal again today 'yeah'. But I did not know this. My nurse told me that whenever I get sick, cold, flu, you name it, my immune system will go into fight mode to fight off the infection. It will also make my CIDP flare up as the bad antibodies will start the attack on my nerves again usually when I get sick. So we think maybe that is what was going on. I was fighting a cold all last week. The new symptoms started about when I came down with the cold. Now that the cold is gone my symptoms have leveled out again. Now I won't get so freaked out next time. I wish I had known this as it would have saved me much anxiety.

16

Hi Andy,

Yep, now that my cold is gone my CIDP symptoms are back in check. At least now the next time I get a cold or flu I won't freak out so much when my legs start to feel funny...i will know what to expect and that it will calm down once my body heals from the cold. This, I guess, makes me even more obssessive about washing my hands and using antibacterial gel while I am at work and walking around in the down town skyway (germs everywhere!). But I got my last cold from a little girl I was baby sitting for a friend. I just knew it the minute she dropped off her daughter that I was going to get sick. Her daughter (she is 9) was hacking and hacking all over my house. I asked her many times to please cover her mouth when coughing but she kept forgetting (or didn't really care to). Within a day or two I started with the exact type of cough. I guess I can't live in a plastic bubble.