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Living with Polyneuropathy CIDP, GBS, & CMT

What caused CIDP in you?


#21

I was interested in the possible link with alcoholism.I was an alcoholic for about 30 years,largely controlled but got way out of hand at the end so I gave up alcohol on 1st December 2000.However,my CIDP symptoms did not start until 2008.All my other indicators of health,cognitive function,liver function etc were all fine.I always made sure I had a good diet too.

Because of the time difference my neuro discounted it.

In my own case,maybe it was working too hard and drinking too hard too!

I really hate alcohol and everything to do with it,the violence and aggression.


#22

I had a tetanus shot In Jan or Feb of 2010 and about a month later could not do my balancing exercises but thought I was just getting out of shape. Then, throughout the summer, I felt strange vibrations, which I at times thought was my cell phone on vibrator mode--but it wasn't! By early September I could not get out of a chair or two without help. Starting falling down when legs felt like noodles. I needed people to help lift me up. Needed a walker. In October I Found a great neurologist who eventually determined it was CIDP. He told me never to have a flu shot even though it was a tetanus shot and I had never had a flu shot. I was put immediately on steroids, then had to wait a month for IVIG which I had every day for a week along with very strong steroids then continued the strong steroids for about 2 years (slowly tapering off) while also being given azathioprine (like imuran). Just got off the azathioprine. The neurologist left for another state a year after diagnosis :( What I found out is that the FEDERAL GOVERNMENT HAS A FUND FOR THOSE WHO GET CIDP AFTER VACCINATIONS but no one knows about it You only have 2 years to apply--you need lots of paperwork--I was too late to get needed medical stuff etc so did not receive it. Thank goodness I had insurance but.... many doctors are hesitant to say why you got it, especially after flu shots--some doctors are forced to take flu shots to keep their jobs--even though they had determined that they were not going to get one.
GO HERE http://www.hrsa.gov/vaccinecompensation/index.html
My doctor told me that no matter if the symptoms go away and I feel back to normal, I will always have CIDP we can relapse.
I have been very fortunate and thank God that I was diagnosed early and felt back to normal fairly early--even though medically my myelin etc was not.
It would be great if we got a database going with treatments, recovery etc. I also took extra supplements even before diagnosis ( if it said it was good for muscles i took it :) Some that I took include alpha lipoic acid, acetyl-l-carnitine and B-12 My husband reminded me i took some metals but i dont remember which one--maganese? zinc? Best wishes to all of you!


#23

Recurring allergic reactions is what I suspect caused it in my mom. She’s severely allergic to hair dye but wouldn’t give it up.


#24

I had shingles. But the majority did not come out through my back nerves but went into my spinal cord, thus through out my body. They believe that this very likely caused my CIDP.


#25

My Doctor told me that almost always CIDP starts with some form of an infection or virus and you almost never know for sure it’s exact cause. Our best guess in my case was my appendicitis.

I know exactly when mine started. I was put in the hospital for an appendix that was near the rupture stage. I was in for 4 days but they didn't want to operate until the swelling went down. I distinctly remember the surgeon telling me that the appendix has a nerve that runs up against it and if it is so swollen it is hard to remove without a chance of "nicking" the nerve. We waited 6 weeks to remove.

Almost immediately after my hospital stay I started feeling tingling and burning in my feet. It worsened over the next few months and went to local specialist and he tested me and said I had "mild neuropathy". After a follow up 6 months later and no new tests, despite it worsening and a "we'll just keep an eye on it", I went to University of Chicago to Dr. Kelly who was recommended by a friend. He ran the same tests and found the CIDP (thank God) I am now on IVIG and they work well to keep under control.


#26

I don't know what caused mine, however, looking back like some of you, and I mean all the way back to when I was a teen, (I am 59 now), I had issues.. I could never run, or overexert myself, my joints hurt so bad I couldn't pick up anything. Parents adn I put it off as arthritis??? had all kinds of tests done in early 20s.. and nothing showed up. who knows. I have diabetes for 33 yrars, had a heart attack 8 yrs ago, and Hodgkins 2 years ago, which is when my CI
DP came to the forefront. I have always been extremely active, working 12 hr shifts in a busy er... which by the way, I got a call from a friend of mine who moved back to Georgia (near Russia). We worked the same ER for several years. she on days, me on nights and sometimes crossig over. She now is on dissability and has the same exact syptoms as I do.. I have brain fog, my legs are very week with foot drop and neuropathy in both, sometimes up the or past the knees, Hand and arm weakness. exhaustion, and weight gain.. (no steroids). I get IVIG two days a week, every three weeks. It does help, I can do more then I could a year ago.. like pick up my large coffee mug without dropping it. sooo.. it is working.. all three of my chioldren have the same joint issues as I did in my teen years.. theres also started then.. I pary that they don't get this dreadful illness...


#27

I spoke to an attorney who specializes in vaccine injury, earlier this month. He said people have three years in from the time they are diagnosed to apply for compensation. I was diagnosed with GBS in Feb. 2011, I did not find out about the vaccine fund until March 2014. The attorney said it was past the deadline to apply. You only have three years. He also suggested that I try another lawyer for a second opinion.

I was hit by GBS two weeks after a tetanus shot, which progressed quickly to CIDP. Was in a wheelchair for two years, and now starting to use a walker more and more. For those who believe a vaccination was the cause be sure to apply to the Government for the vaccine compensation fund. You need to hire an attorney (attorney fees paid by government if you win or lose). Takes 2 - 3 years to get reimbursement. Google it and you will find attorneys who specialize in this.


#28

In my case my mom was diagnosed with Myasthenia Gravis when we were younger. At the time she was treated, her condition was rare and was hard to detect but now the treatment for her condition is also IVIG. My symptoms first started with seizures, then a total hysterectomy, bleeding disorder, and auto-immune liver failure. I was then diagnosed with Sjogrens, but by the following year I kept getting weaker and I lost the feeling and use of my legs, followed by a coma. It took eight years of illness to get my diagnosis. After my first dose of IVIG I was able to gain some of my strength back and later could walk.


#29

To everyone in this discussion I have a word of caution. Beware of what your doctor says.
CIDP in all its variants is statistically very rare. You could be very lucky and have a doc who has seen one of the variants just once before you walked in. You would probably be lucky if your neurologist has seen someone in the recent past who presented with a similar problem.

The simple fact is that the condition is so rare that very few GPs and quite a few neurologists will not have recently updated on the condition - they just do not have the time to research every rare condition there is. Even when they go through the differential diagnosis process and get to the conclusion that you have CIDP there is still a knowledge gap.

They know what you have - but nobody really knows how that happens (the pathogenesis) and the causal pathway (the etiology) is often obscure. If you are lucky you may be able to identify a participating event (the thing that really set it off). It will be a rare neurologist and even rarer doctor who can actually put all this together for you. The simple fact is that in most cases you just will not know (remember) enough of your own relevant history to put it together.

In my case I had recorded history but it was only accidentally and after months of research in the technical literature that I could finally put together a reasonable possibility. Docs do have better access to technical literature and better know the questions to ask but even with your detailed history that is going to be very time consuming. You can expect the doc to pick the "obvious" answer but was that the real answer or just an easy answer?

It is quite likely that the first answer you get from your doc is one you could easily find with a simple Google search. That's not necessarily wrong - but it is likely you will never get a better answer unless you are very lucky and have the information to support or do an in-depth search of the technical literature.

Love2SqD said:

My Doctor told me that almost always CIDP starts with some form of an infection or virus and you almost never know for sure it’s exact cause.


#30



Michael C Stark said:

To everyone in this discussion I have a word of caution. Beware of what your doctor says.
CIDP in all its variants is statistically very rare. You could be very lucky and have a doc who has seen one of the variants just once before you walked in. You would probably be lucky if your neurologist has seen someone in the recent past who presented with a similar problem. <snip>


I just want to second what Michael said. Most GPs will be very unfamiliar with CIDP. My GP had never heard of it. The first neurologist I went to had only the faintest familiarity with it (he suspected two or three other things, and referred me to a neuromuscular specialist). The neuromuscular specialist was quite familiar with it, as she has a number of GBS cases and at least a couple of CIDP cases. Unfortunately, she recently moved away to a research post, so now I'm under one of her juniors.


#31



Tingle said:



Michael C Stark said:

To everyone in this discussion I have a word of caution. Beware of what your doctor says.
CIDP in all its variants is statistically very rare. You could be very lucky and have a doc who has seen one of the variants just once before you walked in. You would probably be lucky if your neurologist has seen someone in the recent past who presented with a similar problem. <snip>


I just want to second what Michael said. Most GPs will be very unfamiliar with CIDP. My GP had never heard of it. The first neurologist I went to had only the faintest familiarity with it (he suspected two or three other things, and referred me to a neuromuscular specialist). The neuromuscular specialist was quite familiar with it, as she has a number of GBS cases and at least a couple of CIDP cases. Unfortunately, she recently moved away to a research post, so now I'm under one of her juniors.


#32

I noticed no one one mentioned spontaneous CIDP; CIDP without a causative disease. I can only guess at a causative disease in my case. I've led a rough and tumble life of vehicle accidents, broken bones, sports injuries and risky and stressful behavior... for 50 years.

Just a supposition, but it appears that a primary disease clicks on, antibodies activate that cures or mitigates that primary disease, but then clicks on an autoimmune attack in the form of CIDP or GBS that won't click off... ever! So, to deduce, one might say that all examples written in this thread are the causes of CIDP. Mercury, sulfur, alcohol, stress... these and many more elements of life are causative when ingested, injected or internalized; producing an iterative disruption of coding on the IgG antibody ??? FcyRIIB, I think it is called.

I find it very interesting (and very disturbing) that I have an accompanying disease called MGUS. This is a precancerous condition that seems to tag along with CIDP, or maybe it's visa-versa. There is a complication called, paraneoplastic syndrome, caused by a monoclonal gamapathy that could be causing my peripheral neropathy (please correct me if I've gotten this incorrect). More tests are coming up for me.

Dose anyone else have this blood cancer complication (MGUS) that accompanies their CIDP?

BTW- a flu shot is designed to prompt an immune response, on a small scale, but in some people, like you and me, some organic chemistry at the nano level is just not getting the right instructions.

At 240 grams/month of IgG @ 120 grams, every two weeks... and yet, I only get 6-7 days of remission from some very gnarly CIDP symptoms!


#33

Would not be too concerned about MGUS. Many quite healthy people have MGUS and it does nothing to them (they don't know about it because they never have the tests someone with CIDP will get).

BUT - if the indications are there it is worth keeping a watch for the potentially nasty developments.

Some of my results (about two years ago) if looked at in the extreme bad case would have me long planted by now. But as my haematologist says "The grass is greener looking down than looking up....."


#34

Ha! I like that Mike. Yes, looking down is greener, especially since I live in a rain forest. When I look down very closely at the grass here I find centipedes, cockroaches, earwigs and a whole host of fascinating fauna. My nature is to investigate, research for answers and try to understand human conditions—especially my conditions!

The pathogenesis of CIDP/GBS is a mystery, the reasons CIDP goes into remission with Immunosuppressants is a mystery... and everyone loves a mystery. Well, maybe not everyone does, regarding this disease; it's insidious invasion, the mysterious way it cripples our bodies, its remission and the remaining disabilities after treatments. The conundrum that is this disease has really gotten under my skin (pun intended... lol).

To me, my neurologists and medical team are groping in the dark to find the appropriate combinations of treatments. I recently had 27 blood tests. The anti-MAG condition that my oncologist was drilling down for was not a problem. However, the only reason I was able to obtain so many drill-down blood tests was because my oncologist was moving on to a new position at a different hospital . He told me that under normal circumstances (and cost) this many blood tests would be for a person with more indications of progressing MGUS.

I am convinced that the more I know about my medical condition, the better it is for me. It seems that if I mention, in writing, a possible problem to a physician they have to follow up. To not do so would be negligent. For instance, I mentioned a whooshing, puslating sound in my ear, a pulsitative tinnitus in connection with possible arteriosclerosis, and my PCP made a referral to a specialist that day. However, the tinnitus goes away with IvIG... another mystery.

Too much caffeine again...lol!

Michael C Stark said:

Would not be too concerned about MGUS. Many quite healthy people have MGUS and it does nothing to them (they don't know about it because they never have the tests someone with CIDP will get).

BUT - if the indications are there it is worth keeping a watch for the potentially nasty developments.

Some of my results (about two years ago) if looked at in the extreme bad case would have me long planted by now. But as my haematologist says "The grass is greener looking down than looking up....."


#35

Mine was caused by the flu shot also. I was extremely healthy, never had any problems. I got the H1N1 vaccine in 2010 and within two weeks my foot started to tingle and go numb. Then it moved to the other foot. I started to trip a lot when walking, pain in legs, and eventually my hands started to tingle and go numb. I was diagnosed with CIDP within a few months. Started IVIG treatment every 21 days. I am doing good because I was diagnosed quickly so not time for a lot of permanent damage to set in. But the bummer is that I can't stop the IVIG therapy. If I try to push it out to longer between treatment of drop the dose I get the symptoms back immediately. So I am tied to receiving this very expensive treatment for the rest of my life every 21 days. I did seek out the vaccine compensation fund and obtained a lawyer through Google. It has taken 3 -4 years and am still not settled but on my way. You need to file a claim within 3 years or your window of time closes. Once you file the claim then it doesn't matter if it takes longer to settle as long as you filed within the 3 year allotted period. I am seeking money to help pay for my IVIG down the way when I retire and am forced to go with Medicare - they don't cover as much as private insurance does.


#36

Please talk to your doctor about trying Imuran (or the generic, azothiaprine), or some other immune suppressant. I have told this story before, but it is worth repeating. I also was taking IVIG every three weeks. My doctor started me on Imuran, but warned me that it would take six months before I saw any effect. I gradually was able to lengthen the interval between IVIG treatments, and about a year ago stopped altogether. I am hoping to never need another IVIG.

My doctor is very honest: he says there is no way to know for sure if the Imuran caused my improvement, or if the CIDP just "burned itself out" as they say. But I would think it is worth a try.

Best of luck!

Bill


#37



Uncle Bill said:

Please talk to your doctor about trying Imuran (or the generic, azothiaprine), or some other immune suppressant. I have told this story before, but it is worth repeating. I also was taking IVIG every three weeks. My doctor started me on Imuran, but warned me that it would take six months before I saw any effect. I gradually was able to lengthen the interval between IVIG treatments, and about a year ago stopped altogether. I am hoping to never need another IVIG.

My doctor is very honest: he says there is no way to know for sure if the Imuran caused my improvement, or if the CIDP just "burned itself out" as they say. But I would think it is worth a try.

Best of luck!

Bill

I've been on IVIG 4 weekly for 76 months now.Today,I switched for the 1st time today from Viagam to Gammaplex which means I now have a 3hr rather than 7 hr session.My post-treatment "yukkiness"-I think the doctors call it "malaise"-so far is less too.I must admit I enjoy being in the company of others with similar problems for the treatment and met only the 3rd person in my part of the Uk with the diagnosis! Of course,I recommended Bens Friends.The social side is very informative and a few of these guys are on Azothiapine.

Steroids

My neuro has only mentioned steroids as an alternative and neither he nor I want to go down that route so should I develop an IVIG allergy,which my neuro never fails to mention could happen,this may be an alternative.

This,thanks,Bill,is committed to the necessary memory banks.


#38

I got sick with some vomiting and then started feeling better but just felt very weak and this got worse. After one week I almost fainted and that night I had lots of blood in the toilet. I had been bleeding from a couple ulcers for a number of days and lost a lot of blood. Went to the ER and they had to give me 4 units of O negative. I have A positive but they had to give me the O type because I needed it now and couldn’t wait for the A positive match. Within 12 to 18 hours I guess, the bottom of my feet were numb. I complained to the nurses about this and we just thought it was because of the loss of so much blood. Numbness never went away and over the next 6 months my feet started burning and hurting a lot worse. Finally sent to a Neurologist and tested and had a spinal tap. Confirmed that I had CIDP. So did my immune system reject the new blood and attack my nerves? Don’t know but that is when I started feeling the CIDP. I’m 61 and this happened a couple years ago.


#39

Type O is a "universal donor".

http://en.wikipedia.org/wiki/Blood_type#ABO_blood_group_system

I had not realized that how the immunoglobins manifested blood cells


#40

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