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Living with Polyneuropathy CIDP, GBS, & CMT

What caused CIDP in you?


#81

P.S
Thought I should mention I have been taking a Stem Cell enhancer,from Stemtech, for 6 weeks now. I think I am benefiting from it,although it is advised it can take 3 months to get a good result. Please read up on it,on line…it is exciting to think my own cells can be released from my bone marrow to go healing through my body.


#82

I have not watched a lot of TV, never had a TV in the bedroom, only watched at night after supper. The first neurologist I saw did a bunch of blood work and the only thing not normal was hemoglobin A1C which was 6 - prediabetic. Repeat blood chemistries over time showed a trend of elevated glucoses so put myself on a diabetic diet and have had normal blood sugars for a year now. However, I was always dieting as a younger person, fearful of being heavy like all my ancestors. I've always thought there is a metabolic component to this disease but I can't seem to find support for that theory. I tried Paleo but it didn't help.


#83

Bottom line here is that there are somewhere around 100 different peripheral neuropathies of which quite a few get the tag CIDP (the rest mostly fit GBS and there are a few outliers that get special names). The science is still out on the pathogenesis (the underlying cause) - nobody knows. We do have a better idea on precipitating events (the triggers). So - what happens when the neurologist finds the clinical indications? Everyone goes looking for the underlying problem that MAY have triggered that unknown pathogenesis. So quite often they find something not quite what they expect like some abnormal blood product.

The question then is - how important is that finding? Was it always like that? Did it cause the CIDP? Did the CIDP cause it? Have a look at the research on MGUS. What about that precipitating event? A few of us are lucky and can identify exactly when things went wrong. GBS people have a better chance as it happens quickly. CIDP - usually develops slowly so most CIDP people are guessing. Mostly why worry? Too late to do something different (even if you could).

What make it difficult for CIDP people is when there is some other condition happening at the same time - then things get confusing.

Cures? Nobody knows. We know IVIg (best and safest) usually halts and can repair demyelination but can't fix axons. Things like stem cell applications are quite in their infancy. If they actually work generally (not for just a few specially selected individuals) we can bet the word will get out very quickly. BUT - then we get back to the original problem - what was the pathogenesis? If we fix the axons, will our "problem" start all over and bite us again after we are repaired because that unknown underlying matter still exists?


#84

You sound like me but for me, it was the Tdap shot and symptoms began about 2 wks later. On Feb 25, 2015, I traveled to St. Louis (Wash U.) and was told what I have is not CIDP and they did many tests on me to disprove (to them) that it is not CIDP, but didn't really seem interested in figuring out what the hell it is that I have. I, like you, have had something for years which my neurologist believes is smouldering MS, and I initially thought after getting the Tdap that the Tdap brought forth the symptoms, but now they are even questioning that diagnosis so now I am back to square one and am frustrated. At this point, I don't care *WHAT* they call this disease...they can call it Bob if they want to...I just want it treated and to find some relief, but now it seems to me that they aren't even going to let me have the IVIG back which is the only thing that brought me any sort of relief of my symptoms. So discouraged!
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


#85

My first Neurologist said it was Type 2 diabetes that caused it, my second one said that was likely not the case. I'm just surprised of how many of you who got it after taking flu shots. I know that there are many out there who preach about how evil the ingredients are within them.


#86

I contracted GBS two weeks after getting a tetanus booster shot, which then transitioned to CIDP. Anyone who develops any physical injuries 2 -6 weeks after receiving a vaccination should look into filing a vaccine injury claim with the government - Google the topic, and look for a law group that specializes in this. It can take 3 - 4 years for the government to approve or deny the claim, but there is no cost to hire a lawyer to file for you.


#87

I did file and your are right, it took 3-4 years but at no cost to me. We did not go to court but came to a settlement out of court. My lawyers said you take a big chance if you actually go to court as they scrutinize everything trying to prove that anything as little as a small infection caused the reaction and not the vaccine. They said that the government hires all kinds of 'specialists' to go against your claim. It is hit or miss depending on the judge you get as to if you win or not. So after back-and-forth I finally settled for a sum. It was not as much as I had hoped but I was really worried that if I went to court the judge would rule against me and then I would have been left with nothing. You can't go back and take what was originally offered out of court if you take it to litigation.


#88

My CIDP was caused by the H1N1 vaccine. It came on about 10 days after. Scary for sure. Now I will never have any other vaccines nor my daughter. Don't know if there is genetics playing a role as to how I reacted. So no flu vaccines EVER for my family.


#89

I feel that my cidp was the result of a viral infection that had me sick for two weeks. Multiple test and blood work, and my doctor never did figure out the cause. Started experiencing numbness in my feet shortly after recovery.


#90

I think that it was flu shot. I had gotten flu shots in he winters of 2010, 2011, 2012, In the winter of 2013 I got the flu shot and a pneumonia shot. Started with CIDP symptoms (leg weakness, foot drop, etc.) that spring. Diagnosed with CIDP in late November of that year. But who really knows?
Mikemc


#91

These are very high percentages of flu shot induced CIDP cases


#92

I had a very bad flu in 1993 with an extremely high temperature. In 1994 the index finger of my left hand became slightly numb. Then within a 4year period I was out of high heels,taking falls at which point I changed doctors and was finally diagnosed CIDP and put on I.V.G.first annually then in a short time monthly. Previously I had lived in Florida for 5 1/2 years.



I have had no vaccinations what so ever since birth. As a cleaning contractor I was exposed to all the products involved in sealing laminate flooring, with a metal polish, and also in scrubbing it off using strippers, which contained ammonia.



I am currently on 140g of IVIG every 5 weeks, and monitored every 6 months by my Consultant. Previous to this problem I was never sick in my life, was active, played squash,rode horses,ran, danced,kept fit etc. ran my own business and raised three healthy children. I honestly think this started in the U.S and going by information gleaned on this web site some years ago, I think it is more common in America than anywhere else. Here in UK it is considered very rare.
Regards
Happy


#93

I was also diagnosed with high levels of heavy metals. Poison limits.


#94

I believe that I am one of them. I developed CIDP within a few weeks of getting a flu shot. Not proof, but very suggestive.

Hobie1dog said:

These are very high percentages of flu shot induced CIDP cases


#95

Thank you for this information. I also contacted GBS that transitioned to CIDP following a flu shot. I have contacted a law firm that I found on google. I was unaware that this was available and am grateful to you for posting this information. I was treated with plasmapheresis and now IVIG infusions every 3 weeks. I am still unable to return to work as a nursing instructor, as I have decreased feeling in my hands and feet, very poor balance and little endurance. Every day is an adventure in mobility and I am not giving up on getting better.

Lumberjack said:

I contracted GBS two weeks after getting a tetanus booster shot, which then transitioned to CIDP. Anyone who develops any physical injuries 2 -6 weeks after receiving a vaccination should look into filing a vaccine injury claim with the government - Google the topic, and look for a law group that specializes in this. It can take 3 - 4 years for the government to approve or deny the claim, but there is no cost to hire a lawyer to file for you.

#96

So far we have 14 people getting this after a "preventative shot". and there were 32 people responding to the question, WOW

Uncle Bill

gslm

gary s

Lumberjack-tetanus

MSakkis - tetanus

donna -tetanus

chirpybirdy

Michelle1966

Lia Jakee Hilton

Gigi

Sunshine- Tdap shot

Mikeme

Bayonne Gma

Angela 492


#97

The following government website lists all the settled vaccine cases. It’s my daily obsession. http://www.uscfc.uscourts.gov/aggregator/sources/11


#98

Mercola is famous, yes, but he is also in the business of making money through his web activities. Information from commercial sources (eg .com sites) should always be viewed critically and with a healthy measure of skepticism.

Seenie from the Moderator Support Team

Hobie1dog said:

Everyone should go to Mercola.com (famous Web MD) and read the article "Vaccines can wreck your immune system "

http://articles.mercola.com/sites/articles/archive/2011/04/29/the-e...


#99

And we already know that everything on the Web is to be questioned. That's the sad part, you can't believe half of anything these days,as all books, magazine articles, newspapers, tv, has 1 author, with their biased opinion.

Just look at political and/or religious writings for the worst examples.

#100

Hobie1dog, you've done a great job of bringing this old (and shaggy) thread to life again, and you've raised some great issues about vaccines and information and information source reliability.

On our ModSupport team we have TJ, who is just coming back from a bit of time off, and he's our go-to guy for all things medical and statistical. He will definitely want to chime in on this one, and maybe raise a few other issues as well. So what I'm going to do is close this thread for further comment, and then TJ will open a fresh (and slightly more focused) discussion along the same lines. Stay tuned, and be sure to participate when that one pops up on your monitor!

It's great to see more action here. Thanks, Hobie, for getting the conversations going!

Seenie from Moderator Support