Saturday, April 11, 2015

Guillian Barre Syndrome (GBS)... Chronic inflammatory Demyelinating Polyneurophy (CIDP)...... Acute Motor Axonal Neuropathy (AMAN)

What the fuck is the difference?

In any case, I was only mostly dead.   Unfortunately, Miracle Max isn't around to give me a make-believe cure.  Fortunately, I have good doctors.  



Skip ahead to 40 seconds.  And then again to a 1:10,  Celebrate small victories.

#fucidporwhatever
A little less than a year ago I thought it worst I had Lyme disease.  I dragged myself into my doctors office and was quickly informed I had Guillain-Barré Syndrome.  A couple of weeks later I had a relapse and heard the word chronic.  After second relapse I had chronic inflammatory demyelinating polyneuropathy.  I got home from rehab and started playing with the Internet.  A lot of the other people who had CIDP had a lot more problems than me.  They were suffering from a lot of pain, I have no pain.  So further tests showed that only my motor nerves are affected.  Which means I have the variant of GBS called Acute Motor Axonal Neuropathy.

Go ahead, Google AMAN.  Nothing  on the first 20 screens.  Maybe this blog post will change that.

Just this on Wikipedia.  The syndrome typically presents as a progressive flaccid symmetric paralysis with areflexia, often causing respiratory failure. Electromyographic studies and nerve conduction studies show normal motor conduction velocity and latency with decreased amplitude of compound muscle action potentialsF wave and sensory nerve action potentials are often normal in this illness. Pathologically, it is a noninflammatory axonopathy without demyelination.[1] Antibodies attack the coating of the motor neurons without causing inflammation or loss of myelin. It does not affect sensory neurons, so sensation remains intact despite loss of movement.


I don't think it really matters what you call it, I got what I got.  If anyone out there has any tricks on how to regrow nerves leave me a comment.

9 comments:

  1. After my diagnosis in 2011 I tried acupuncture with a doctor of traditionL Chinese medicine in Dallas and had remarkable results.give it atry

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  2. Chainring, pls tell me more about the acupuncture relief? What relief did it provide? How long did you pursue it? Any impact on nerve pain? Thanks

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  3. Chainring, pls tell me more about the acupuncture relief? What relief did it provide? How long did you pursue it? Any impact on nerve pain? Thanks

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  4. I wish had an answer for everyone. I am disabled also but not GBS CIDP. I have Crohns disease, fibromyalgia, osteoporosis & arthritis, necrosis in both hips & shoulders, hypothyroidism, hypoglycemia and a bunch more. A dead dog is in better shape than me. The only thing that doesn't hurt ALL THE TIME is my Hair! My husband has GBS CIDP and cancer that is spreading and I watch him suffer everyday with a broken heart.

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  5. The only thing I have found is in Australia they have a treatment using stem cells and never can regrow but at a snail's pace. I saw Veteran who lost both arms and legs and he was I believe the first to get an arm transplant. I saw this on TV and he was with his doctor but believe it or not it was working with intense physical therapy. They said the nerves will regrow (not sure but an inch a month) in the limb. I'm not sure about exactly what they are doing in Australia but from what I read it does work. You have to go threw and fail all the treatments the have here 1st,  IVIG and plasma exchange and when they fail then you have to get to Australia and they have a GBS foundation that has to raise the funds for this extremely expensive procedure. Only a handful of people have had it but from what I read it did work.

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  6. Our Government will never get a grip and let the medical professionals use stem cells in the USA even though they can be harvested from all ambilical cords from every baby born. There are almost 4 million babies born in the USA every year and in 2014 so why don't they tap this resource?  MONEY the all mighty! Drug companies don't want people being cured because then they can't make MONEY sell us everything possible. Insane YES but unfortunately TRUE! They claim we can't use stem cells because they are human life and 1.2 million abortions are preformed every year. Another untapped potential resource. If you bank your child's stem cells then if they ever need them you could potentially use them and many people are doing this. When my Grandson was born 4yr ago I begged my daughter to bank them. Unfortunately she didn't and now we know he will need them which is heart breaking. He as a sensory processes disorder (form of Autism) and a genetic malformation of his teeth. Who know what else will be found. I have been sick every minute of everyday of every year for 30+ yrs now and it's getting worse not better. Doctor's don't want to take care of me because as several doctor's have put it I am a lawsuit waiting to happen! Unbelievable right? I understand the suffering and frustration of autoimmune diseases very well and the doctor's can't believe I am still alive. My husband was the strong one and is always putting me 1st which infuriates me! I am watching him get worse and worse everyday and there isn't a DAMN THING I CAN DO so trust me when I say I get it from both sides, watching and being and it FUCKING SUCKS AND I JUST WANT TO SCREAM!  The  stress is killing me and watching someone you love slowly dying is horrific and that's putting it mildly.  Now they think his GBS CIDP maybe turning into ALSO so you know how awful that is and what happens is going to be........

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  7. Life isn't fair but tourcher is reprehensible and in my opinion it has to do with our government not stopping genetically modified food's and growth hormones into animal we use for food. My parent's are in there 80''s and have been heathly most of there lives. I'm in my early 50's and it's unbelievable how many friends I have lost to Cancer, diabetes and so much more. The life expectancy is going down for the first time since the flu pandemic in the early 1900's! I think it's because of the poisoning of are food, water and air and modern medicine because even in the great depression of the 30's less people died then than in this depression! I am as angry as everyone who gets there life stolen by an autoimmune disease! So I am sorry to say but I am YOU! MY husband is YOU! You should be thankful that you don't have the PAIN but I am sure it will show up so get read because you think you have it bad now, JUST WAIT! I think that the government/OBAMA is just as bad as HITLER because they continue to cut programs for the disabled and elderly to pay for OBAMACRAP heath insurance. Now if your an uninsured for medical you are getting fined by the government!  Outrageous, UNBELIEVABLE because he's pissed that only 7million people who signed up for Obama Crap out of 319 million people and 11.5 million who are here ILLEGALLY!  The illegals get amnesty, health insurance, welfare. Housing food stamps ect which our taxes are paying for because it's all SUBSIDISED for them, while the disabled, elderly and Veterans get SHIT! If you are trying to live on social security disability benefits your screwed and I know because I am. I don't have money to even get the essential thinks to live like food. My husband gets food stamps but they have been decreased the last 2yrs in a row. Now has the cost of living dropped? NOBODY told me? I don't even qualify because I make too much? $1000 a month is too much? Our only hope is to get an HONEST GOVERNMENT but that is a contradiction of terms. This will only happen when hell freezes over!

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  8. My husband belongs to many support groups on Facebook and it seems to help him because there are alot of people there who are/have been for a long time. I hope you try there because you never know what may help or who. So remember You are not me isn't true and there are many who struggle from more thing I can list. People die everyday from horrific thing so stop thinking your the only one who suffers because you are not alone if you just OPEN YOUR EYE'S AND LOOK AROUND!

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