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Living with Polyneuropathy CIDP, GBS, & CMT

What caused CIDP in you?


#41

Perhaps you caught something from the millions of sheep there... kidding. Where was your pain? Was it in the lower abdomen, seeming to spread down from that location towards the knees?

I call this my double-whammy, since my pain/muscle dysfunction seemed to radiate both upwards from the feet and downwards towards the knees.

In CIDP, are we all just experiencing an allergic reaction to IgG? I know it is more complex, but perhaps it is just an uncontrolled a histamine cascade reaction that is out-of-control internally?

Do you have a secondary chronic illness (or any illness) that seems to happening in conjunction to CIDP?

Sue Jones said:

Three years ago I was on holiday in Nz and I felt ill on last but one day , when home I got worse and was sent to hospital were they thought I had a stroke but I hadn't and face twitching got worse they put it down to bells palsy which again proved wrong they sent me home with an honest ""we don't know whats wrong" see how you go .I then over time got tingling toes and that crept up and feet became numb then hands started I was in alot of pain eventually and couldn't manage the stairs .Untold tests inc lumber and nerve study got diagnosed CIDP total time 3yrs the cause I don't have a clue

#42


My case is similar to yours Uncle Bill, same possible low level symptoms for possibly years that would never be detected nor complained about. Then increased stress, not enough sleep (shift work), a flu shot and the likely trigger was probably an unknown virus as i was extremely extremely fatigued and had finger joint pain....then about 2 weeks later those symptoms lifted but CIDP symptoms started.

Uncle Bill said:

My most noticeable symptoms occurred within a week or so of getting a flu shot, and my neurologist is pretty sure that was the cause. It seems to be pretty well established that getting the flu, or getting a vaccination, can cause CIDP.

But I am not so sure about my case. When I look back, I realize that I had what might have been CIDP symptoms for some years before it became real obvious. These included numbness/tingling in my feet, foot drop (lots of tripping and stumbling), general clumsiness, and fatigue. It was only after the flu shot that I got so weak that I could barely walk (and at times could not even stand up).

So, I wonder if I did not have some sort of low-level case of CIDP, and the flu shot pushed me over the edge into a full-fledged case. No way to know, though.

Bill


#43

Hi There!

It's hard for me to say because I think for probably 10 years or more I would have minor flare ups but mistook them for being out of shape or working too hard in the yard gardening or whatever. But prior to being diagnosed in February 2012, I was given a mandatory flu shot at the hospital where I work. If you don't get the shot, you get fired. To my knowledge, I had never had a reaction to a flu shot (but probably was having mini symptoms and brushed them off) in the past. So I had my flu shot in October or November of 2011 and shortly after began falling over my own feet. Kept tripping and falling and felt like my feet were on fire. At times, I would go to speak, and just garble would come out. I started thinking maybe I was having mini strokes or had M.S. (my sister has M.S. and her daughter has it too). So after about my 4th fall down the stairs in about 2 weeks I got an appointment to see a neurologist who did a million dollar workup to rule out everything but the kitchen sink. He diagnosed me with CIDP (which I had never heard of) and MGUS. The neurologist I see at the University of Michigan Neuromuscular Clinic says that the MGUS is what is causing my CIDP. I refuse to ever have the flu shot again. My doctor will back me up on this. My belief is the flu shot because every year in the Fall when I would get a shot, I would be so weak and fatigued and achy. It makes me wonder how many aging people are in nursing homes and unable to walk because of the annual flu shot? I'd rather take the flu any day than this damn disease!

Lisa in Michigan


#44

Has anyone brought suit against the Vaccine Fund for being diagnosed with CIDP due to the flu shot? I am in the middle of my lawsuit. It has been three years and the government has finally offered me a settlement to avoid going to litigation. I just don't know if I should accept the lump sum or go to litigation. The sum they offered me is not much. They base your settlement on certain criteria. One of the things they base the sum on is what your out-of-pocket expense is right now. That is against me because my out-of-pocket expense at this time is quite low. My current insurance plan covers my IVIG completely except for my $25 copay each month. We went back and forth a few time with rejections and the government would come up a little bit but not much. I received the final settlement letter today. My lawyer wants to know if I want to accept or go forward with litigation. I just feel that even though my out-of-pocket is low right now that doesn't mean it will stay that way. I am 50 and retirement is looming in my future. What happens when I am no longer on private insurance and I have to rely on Medicare. I bet my out-of-pocket expenses will skyrocket at that time. My argument is that this is a life-long disease and I will be dependent on very expensive drugs for my life in order to function. I want the government to pay out enough that I feel secure with my future should I have to pay a portion of my IVIG going forward. Who knows, I could lose my job in the near future and be forced on Obama Care. I know that Obama Care does not cover the IVIG for most people. What to do? I want to accept to get this over with. I know if I go to litigation I could end up with a worse settlement if my judge rules against me and decides I don't deserve any settlement. It is a risk, but if I accept now then I am stuck with this low settlement.


#45

Your case sounds similar to mine in some ways. Looking back, I also feel that I had low-level symptoms for a number of years - fatigue, clumsiness, constant tripping. I just attributed them to creeping middle/old age. The real problems started shortly after a flu shot.

I fell down the steps once when the worst symptoms were just beginning to develop. My wife asked me what happened, and I could not give a good explanation, except that my feet just went out from under me. After my symptoms got really bad, I fell a couple more times (fortunately on level surfaces), when my legs just seemed to stop working for some reason, and I realized that was what had happened to me on the stairs.

I don't know what to say about this, except that doctors should take their patients seriously if they complain about fatigue, etc. However, I'm not sure they could diagnose it conclusively if the symptoms aren't fully developed.

Bill

Lisa Jakee Hilton said:

Hi There!

It's hard for me to say because I think for probably 10 years or more I would have minor flare ups but mistook them for being out of shape or working too hard in the yard gardening or whatever. But prior to being diagnosed in February 2012, I was given a mandatory flu shot at the hospital where I work. If you don't get the shot, you get fired. To my knowledge, I had never had a reaction to a flu shot (but probably was having mini symptoms and brushed them off) in the past. So I had my flu shot in October or November of 2011 and shortly after began falling over my own feet. Kept tripping and falling and felt like my feet were on fire. At times, I would go to speak, and just garble would come out. I started thinking maybe I was having mini strokes or had M.S. (my sister has M.S. and her daughter has it too). So after about my 4th fall down the stairs in about 2 weeks I got an appointment to see a neurologist who did a million dollar workup to rule out everything but the kitchen sink. He diagnosed me with CIDP (which I had never heard of) and MGUS. The neurologist I see at the University of Michigan Neuromuscular Clinic says that the MGUS is what is causing my CIDP. I refuse to ever have the flu shot again. My doctor will back me up on this. My belief is the flu shot because every year in the Fall when I would get a shot, I would be so weak and fatigued and achy. It makes me wonder how many aging people are in nursing homes and unable to walk because of the annual flu shot? I'd rather take the flu any day than this damn disease!

Lisa in Michigan


#46

I think it was from my neck surgery. And I still don't have a definitive diagnosis still. I talked with my neurologist last night and my nerve study came back better so he said I didn't have CIDP but my parental nerve showed up as damaged now. So I told him I felt I was going through as i always do around this time a nerve regeneration right now. And since I have the neck injury I understand why it's making it so hard to make the diagnosis.

So he told me he agree'd that even some people don't show normal nerve studies that have the disease and my neck injury was making it complicated. So he is going back to the neuromuscular doctor who gave me the second nerve study to discuss the nerve regeneration because they still can't explain the pain or can come up with a treatment for the pain. I also told him I'd rather get treatment while I am still have some regeneration before that completely stops.

It's just my theory that my neck injury caused this because that is when the neuropathy started and I never recovered and each year I go down really bad but will get a little better especially in the summer months, but as the years pass the periods of getting a little better are shortened as well as how much better I get. So in my opinion I have had this disease longer than what I have thought. I think because my neurologist is vascular, he doesn't want to make the definitive diagnosis even though he agree's with what I am saying. So I'm just hoping I can at least try the IVIG just to see if it works. Otherwise, at this time they have no treatment for my pain and that really scares me.


#47

I can tell you that my CIDP IVIG infusions are covered 100% by Medicare, probably because no one could afford the 20% co-pay. I was diagnosed at age 71 and have been fully covered. I do have good supplemental insurance which is necessary to cover unforeseen peripheral medical expense.

chirpybirdy said:

Has anyone brought suit against the Vaccine Fund for being diagnosed with CIDP due to the flu shot? I am in the middle of my lawsuit. It has been three years and the government has finally offered me a settlement to avoid going to litigation. I just don't know if I should accept the lump sum or go to litigation. The sum they offered me is not much. They base your settlement on certain criteria. One of the things they base the sum on is what your out-of-pocket expense is right now. That is against me because my out-of-pocket expense at this time is quite low. My current insurance plan covers my IVIG completely except for my $25 copay each month. We went back and forth a few time with rejections and the government would come up a little bit but not much. I received the final settlement letter today. My lawyer wants to know if I want to accept or go forward with litigation. I just feel that even though my out-of-pocket is low right now that doesn't mean it will stay that way. I am 50 and retirement is looming in my future. What happens when I am no longer on private insurance and I have to rely on Medicare. I bet my out-of-pocket expenses will skyrocket at that time. My argument is that this is a life-long disease and I will be dependent on very expensive drugs for my life in order to function. I want the government to pay out enough that I feel secure with my future should I have to pay a portion of my IVIG going forward. Who knows, I could lose my job in the near future and be forced on Obama Care. I know that Obama Care does not cover the IVIG for most people. What to do? I want to accept to get this over with. I know if I go to litigation I could end up with a worse settlement if my judge rules against me and decides I don't deserve any settlement. It is a risk, but if I accept now then I am stuck with this low settlement.


#48

I too am on Medicare with supplement called Part F -it covers everything that Medicare doesn’t. I have had no out of pocket expenses (except the premiums for Part. F).


#49

I was a very healthy, exceptionally strong and active person, but had chronic asthma and allergies, so I took a yearly flu shot as a precaution against flu. But within hours after taking my 2007 flu shot, I got a severe headache, and unusual muscle aches and pains developed within days. Then nerve disfuction quickly took over my entire body head to toe, and I could not tell hot from cold, but had intense painful tingling on all my skin. I lost 15 pounds within a few weeks while my muscles quickly deteriorated, and within 4 1/2 weeks I could no longer walk...except in a staggering, halting way. My hands quickly became crippled and my feet dragged, and I lost the reflexes in my knees.

The right side of my mouth drooped down, and I lost control of my eating and speech. My vision, hearing, speech and memory were also initially damaged, but I have since taught myself to recover many of these former faculties. The sleep-center of my brain was also adversely affected, and I could no longer fall asleep, unless I drank coffee every few hours, which I learned to do, along with dealing with the pain by taking the maximum dose of acetaminophen daily for about 3 years. Agonizing muscle contractions ravaged my entire body within the first few years, and left my muscles more damaged. Within 3 years, my headache left, my skin lost the capacity to feel, except for intense pain in the nerves that were still left. The tendons of my hands, shoulders, elbors, wrists, feet and toes tightened and have left me with some misalignment.

After 6 1/2 years I still have ongoing mobility issues, and still need a cane and sometimes a medical walker. Life and daily living continues to be a very difficult struggle with pain and crippling. However, I have survived all this time, and that is the main thing, and God has sustained me through all of it.

Two years into onset, I could not thread a needle, but for the past year, I have been relearning how to knit, and it has given me back more mobility in my hands. It also helped my brain connections to heal or redirect, and I can speak better now. I have continued my work, though I lost much ground, and am still self-supporting.

Throughout all of this, I am still UNDIAGNOSED, and the medical system has given me no help with any of my symptoms or how to cope with life as it is for me now. My symptoms were ignored for too long by each of the professionals I dealt with, and in dealing with them now, there is only a wall of silence. I feel my case was bungled, and there is no recourse.

I believe I got GBS-CIDP from my flu shot. I ascertained this by finding an old pamphlet in my file cabinet from a former flu-shot in 2005 or 2006 (they didn't give me a pamplet in 2007), and reading through it to pinpoint the symptoms of an adverse reaction to the flu shot. I had the same symptoms, and I yet nobody would discuss it or help me. So, I went to the internet, and took a look at the info in the Canadian Health Care System, the American Health Care System, and I found online support groups--which were my lifeline throughout one of the hardest times of my life. Thank God for these support groups! God used them to keep me going, to give me hope and help and understanding, and to band together with others who are dealing with this condition.

I have learned much throughout this terrible trial, and there is still a lot to learn. But the main thing is to figure it out with the help of God and those who truly know and care, and deal with it, and live my life anyway!

Gentle hugs,

Donna


#50

Hi Donna,

You need to find a good neurologist with experience with CIDP, and tell him this whole story. Make sure he has treated other cases.

My neurologist told me there were three criteria I had to meet:

  • Symmetrical, bilateral weakness that lasts at least 8 weeks. (You clearly seem to have this.)
  • Certain nerve conduction patterns, as measured by EMG. He should be able to do the EMG in his office the day you see him.
  • Elevated levels of protein in your spinal fluid. This requires a spinal tap. This is not nearly as bad as people make it out to be, but does require a day trip to a hospital.

I had all of these, so my diagnosis was definite. Some doctors also include loss of reflexes in the knee, which I also had. I had a quick diagnosis and fairly quickly found a treatment that works, so my neurologist now says I am on "cruise control."

If your diagnosis confirms CIDP, there are treatments which are known to be effective. Not everything works for everyone, but at least there are things to try. CIDP is rare. Even many doctors are not aware of it. My family doctor says I am educating him. So, fight to find someone who is familiar with it, and keep after it!

Bill


#51

I was sick with flu, which never happens, and after that I started with symptoms, walking into walls feet on fire… I used to jog a mile everyday that became harder and harder which puzzled me. Five years ago I went to San Francisco and had a nuclear MRI done on my brain by a leading neurologist in the field. He said for me it was a genetic gene causing the problem, not much you can do about your genetic makeup. I am not sure about this I just know that I have lived with this over 15 years. I have had the nerve biopsy to determine it is CIDP and all the test to confirm that. My first diagnosis was done a Uc Davis 15 years ago and I was so happy I finally had a name and verification for what I thought was all in my mind.
Now I live with this, I still work one day a week but I find unless I am using my cane it is hard for people to know I am sick, (I don’t look sick on the outside) or having a hard day. I can’t say for sure but the year I got sick I believe is the only time I have ever gotten a flu shot.
Thanks Gigi


#52

This CIDP, if it were as well known as MS; if depicted in all it's agony and mysterious symptoms by some perfect-physique character on TV or in the movies, then people would recognize it right away and sympathize. "OH! you have CIDP! You poor girl," a George Cloony movie character asks, then kisses Miss CIDP of the Month on the mouth, on her perfect young lips, while looking into her crying eyes as she says, "The pain! Oh, my God the pain is so horrible... I feel like I'm dying at times. Darling! Kiss me! Make it better!"... Then the world would realize we're not misspelling CHIP or CHOP or CODP or CYST when we talk about this horrible disease. And just because one looks healthy, well, this many times betrays the desperate dysfunction and pain that is ripping and roaring in us just under the skin when in relapse, or if untreated or treated incorrectly

I notice many people i n this thread have had 15+ years of mystery diagnoses and then a grand finale of a CIDP diagnoses... And still no resolution or joy or happiness.

In my case, I fought the constant Kaiser HMO diagnoses over diabetic neuropathy for 15+ years. Year after year, I walked into the the office of neurophysiology at Kaiser Maui HMO, (but never the same neurologist treated me, and this is something I'll never understand) ... and each time I was further and further stricken by a disease that was obviously much more than diabetes.

So, I asked for the strongest possible diabetic medication and lowered my Ha1C to 5.6, from 7.0, for 6 consistent months. From this I determined that some disease was still ripping me apart... ALS, MS, Issac's Syndrome? I had many symptoms similar to ALS and by thinking this I became somewhat hysterical, which did nothing to further a competent diagnoses derived from the standard protocols of HMO-land and bean counters in medical smocks over Armani suits.

Finally, a substitute neurologist signed on at Kaiser Maui for a 6 month gig, listened closely to me and ordered 3 MRIs, a spinal tap, nerve biopsy (not done) and many, many blood test. THEN he got sick and the recommendations he made for IvIG floundered in the HMO-void for another 10 months.

When this diagnoses was discovered by another neuro, he ordered the same tests! I'm convinced these substitute neuros come to Maui only to vacation, go to the beach and meet women... lol.

However, after 8 months of IvIG loading doses (again made by three separate, temporary, fun-in-the sun neuros) I have found relief, muscle relaxation heaven (FINALLY!) and I am able to catch my breath... sorry, this was a rant. But we all suffer for years or months and then we're subjected to days and days of infusion's side-effects; the skull-splitting headaches and nausea that no words can ever really describe...

I want to scream, ENOUGH ALREADY! But I fear a relapse like a Biblical plague

And then there is the "Bomb" episode that really added spice to this whole continuing adventure....



Gigi said:

I was sick with flu, which never happens, and after that I started with symptoms, walking into walls feet on fire.... I used to jog a mile everyday that became harder and harder which puzzled me. Five years ago I went to San Francisco and had a nuclear MRI done on my brain by a leading neurologist in the field. He said for me it was a genetic gene causing the problem, not much you can do about your genetic makeup. I am not sure about this I just know that I have lived with this over 15 years. I have had the nerve biopsy to determine it is CIDP and all the test to confirm that. My first diagnosis was done a Uc Davis 15 years ago and I was so happy I finally had a name and verification for what I thought was all in my mind.
Now I live with this, I still work one day a week but I find unless I am using my cane it is hard for people to know I am sick, (I don't look sick on the outside) or having a hard day. I can't say for sure but the year I got sick I believe is the only time I have ever gotten a flu shot.
Thanks Gigi

#53

I’ve been reading all the responses to this question - how did you get CIDP?, and I’m struck by the number of people who lived healthy strong lives before the symptoms were apparent or diagnosed. I’m also struck by the number of people who had this process going on in the back ground of their lives until it became severe enough to interfere with daily living. I think there could be enough potential data for a quantitative study of the causes and progression of CIDP from these anecdotal sharings. The problems With this disease is its so unknown even by a Neurologists. Does anyone know if there is a central database of CIDP symptoms, morbidity, etc.?


#54

I just wish how you all kept fighting to get the diagnosis and finally treatment. I'm just 2 years into this and am getting exhausted trying to fight for a diagnosis and treatment. I posted under restless leg syndrome that I was having it all over my body and I had gone off the gabepintin because of the cognitive problems and mental problems it gave me and all of a sudden I was feeling like I was shaking inside and visibly shaking outside until I was going insane. So I went back on the gabepintin and it has subsided. I also take ropinorale for the restless legs.

The other night my legs quit working and I kept going down because they just wouldn't work. How do you get someone to listen? I have talk to others that their neurologists don't believe they have the symptoms and think they are lying and faking. So far mine has never said that to him and I started bringing someone with me to back up what I am saying.

So I had been diagnosed with CIDP, then that doctor got fired so they questioned it. Did the EMG again and I had become a bit better and I think that is from a bit of nerve regeneration become some symptoms have disappeared like the bladder control problems Pain is still there big time. I get better for a bit once a year and I can only contribute this to some nerve regeneration but each year the time I'm better keeps getting shorter. Last year because I love gardening I got about a month and 1/2 of being better and as I went down I thought if I just keep going I can keep this from making me go down and I was wrong. i ended up on the sofa from Aug through April and now I can get out a little. The pain is really bad though but I'm told I need to move by so many when I am able.

I'm also on disability, medicare and only medicaid for part D. They say I get to much in disability to get anything else. I'd like to know what this medicare part F is and if I can get on that. Or do I have to become catastrophic to get the part F?

I have tried other neurologist and am not getting anywhere so I just keep sticking with the one I have had since 2005. I do believe he may be trying to get me the treatment, but because he is a vascular neurologist that I see from my neck injury I think he is dependent on the diagnosis from the doctors doing the EMG.

And those that believe in the spinal tap, it is a well know fact that so many people do not test positive for the protein. I have not had one and if I can avoid it I am doing so because I have had one and it cause a lot of problems in the past. It is also outdated use to diagnose CIDP although many doctors will still use it. I had posted the latest criteria in diagnosing CIDP some time ago but those facts were from 2012. I'm sure they have changed even more. I'd like to know how much if I can find any studies or watch any lectures online. The facts I posted came from a lecture I saw online from the National Association of GBS/CIDP.

Frankly I don't know where to go to fight anymore...........


#55

Medicare PartF is a supplement you buy. I went through an insurance agent who explained all the details about each supplement. Part F is the most expensive because it covers all Medicare copays, but it has been well worth it just for the IVIG alone.


#56

Does a medicare supplement insurance you can purchase not do the same? I do still have co-pays but their very small. I don't however know how the insurance would treat the IVIG. I talked with my neurologist last night and their still studying my EMG trying to figure out why I have this restless syndrome all over my body and said the IVIG is till not off the table. It's good to know all the options and interesting to know how each seems to think they got CIDP.


#57

There is no definite cause is what I have learned. It's possible that we inherited a predisposition for having a weak immune system and/or that stress played a big part.


#58

I go for lots and lots of stress followed by very bad flu symptoms…then the stumbles started, falls and a numb index finger…and 14 years in am of the same opinion.
Regards
Happy


#59



Uncle Bill said:

Hi Donna,

You need to find a good neurologist with experience with CIDP, and tell him this whole story. Make sure he has treated other cases.

My neurologist told me there were three criteria I had to meet:

  • Symmetrical, bilateral weakness that lasts at least 8 weeks. (You clearly seem to have this.)
  • Certain nerve conduction patterns, as measured by EMG. He should be able to do the EMG in his office the day you see him.
  • Elevated levels of protein in your spinal fluid. This requires a spinal tap. This is not nearly as bad as people make it out to be, but does require a day trip to a hospital.

I had all of these, so my diagnosis was definite. Some doctors also include loss of reflexes in the knee, which I also had. I had a quick diagnosis and fairly quickly found a treatment that works, so my neurologist now says I am on "cruise control."

If your diagnosis confirms CIDP, there are treatments which are known to be effective. Not everything works for everyone, but at least there are things to try. CIDP is rare. Even many doctors are not aware of it. My family doctor says I am educating him. So, fight to find someone who is familiar with it, and keep after it!

Bill

Bill, thank-you for your reply, and I agree with you. However, the only doc available in my town who tried to deal with this, got transferred soon afterwards, and I've been stuck with temporary foreign docs who are doing their stint before moving on...and somehow, my medical records are not available to them, which might have helped me. I made many attempts to find help during onset and for the first few years of this, but gradually I realized (to my shock and dismay) that nobody in the health care system was going to help me, because they would have to accept some responsibility for the delay and denial in meeting patient need. The drastic change in my health: pre flu-shot and post flu-shot cannot be denied in my little community, so I have the truth on my side anyway. And it's too late now to change anything, even if I had access to a neuro, which I don't.

I've read about similar experiences from others in various GBS-CIDP websites, and it looks like we are up against a 'don't know and/or don't care' attitude in some of these health care professionals we are dealing with. Patient care in not the number-one priority.

--D.U.


#60

Hi Donna,

I am seeing a neurologist that specializes in CIDP. He is one of the top 10 in the United States. He is located at the University of Southern California (USC University), in the Keck Medicine of USC. His name is Dr. Said R. Beydoun, MD,FAAN. I do not now what state you are living in, so I have now idea if this will help you.

I hope you find help soon.

Linda