Parkinson's disease and guillain barre syndrome


#1

Hello all,

 

Has anyone out there had experience of having, or knowing someone who has both PD and Guillain Barre Sydrome?  If so would they please contact me?


#2

Hi I had guillain barrie syndrome in 2004.That was before being diagnosed with PD.


#3

My mother and I have both had Guillain Barre and now my twin brother has been diagnosed with PD. I'd be interested in any research into potential links.


#4

My Brother died from complications of Guillain - Barre 4 years ago. He was aged 72 and had been diagnosed a couple of years before. I've had PD over 20 years and each time I've asked the connection question, they (the Neuro's), all agree that there isn't a connection. I'm not so sure!

I feel so much sympathy for you and your family Wendy. You've all been dealt cards from the bottom of the pack. I wish you luck for the future.

Peter 


#5

Hi, Yes I was diagnosed with Guillain-Barre syndrome in 2012, (age 62)with incomplete recovery, and still have problems with the peripheries, i.e hands and feet. Gradually since then I developed an increasingly problematic tremor, mainly in my left hand, eventually diagnosed as P.D. after a DAT Scan. Initially the specialist thought it  was nerve damage post GBS, as I did too. Now informed in a letter on 15th September that I have degenerative Parkinson's Disease. May have had it for 5yrs!What a bombshell that was. Trying to get contact with the nearest P.D. nurse specialist, left message but no call returned as yet. Feel isolated and not sure where I'm going with all this. P.D. Website help line number was very helpful and are chasing things up for me. I need a P.D. nurse to talk things through with, face to face really, not over the phone. It's not just the symptoms, they are no different now than before I was diagnosed, it's the emotional impact, and what to expect from the medication prescribed.

( Co-careldopa 12.5/50 mgs), and what to expect long term and how to cope with it etc, etc, etc

 

 

 

 

 

 

 


#6

There is no connection between the two conditions. Guillain Barre is essentially a peripheral neuritis, only rarely affecting the brain, but if it did you’d be communicating with the forum through a medium. Parkinson’s, as we know, is a condition affecting the substantia nigra in the brain. There is no similarity whatsoever in the underlying causes of these conditions. GB is an autoimmune reaction to an infection, which in most people would simply disappear without consequence. Parkinson’s has never been associated with infection. 

Of course there will be people who have had both conditions. Parkinson’s is relatively commoner than GB, but statistically it is bound to occur to a few folk that the two conditions will arise. That’s all it is - coincidence. That’s why the neuro specialists will always say there is no association, because there isn’t any.


#7

Hi island Mike,   good to hear your comments. I probably knew, (or should have known) this all along, but yes your comments put it in a nutshell. i.e no connection. I suppose it's just bad luck that I got both conditions. Out of interest, being no statistician, I wonder what the odds are of both GBS and PD occurring in the same person, bearing in mind the relatively long odds (1:100,000) of getting GBS.


#8

Hello all,

I had GBS the axonal type in 1973 at the age of 23 I was diagnosed with PD in 2013 at the age of 61. I’m sorry but there is definitely an association. I have been told by several neurologists that there is not as GBS is a peripheral neurological disease and PD is a Central Nervous System disease. However, the Brain Stem is affected in Axonal GBS and the last time I checked my Brain Stem was part of my CNS.

I read an article that speculated that all GBS patients have some brain stem involvement.

I also read an article that classified GBS as a Lewy Body Disorder. That it may take 30 years for the increase in Lewy Bodies caused by the GBS to clump together and eventually cause something else like PD.

Please refer to "The Lewy body and Parkinson’s disease In: Clifford Rose F,ed Parkinson’s Disease: clinical and Experimental Advances. London: John Libby and Co, 19873-11

In this article the lewy body positive cases of GBS , spinal cord angioma, MS, Leuco-encephalitis etc
had a latent phase of up to 30 years between the incidental Lewy body disease and PD. This suggests a long preclinical period before one develops PD.

Can someone tell me why more research is not being done? And really, sometimes anecdotal evidence does lead to true answers. GBS and PD are not particularly common. The fact that there probably is an association will not change the fact that I had/have both but maybe there is a answer hidden here to help others.


#9

I agree your brain stem is part of your central nervous system, but there is still no connection between the two conditions. Parkinson’s has nothing to do with the brain stem.

I don’t know where you found the information that GBS is a Lewy body disorder, but it just isn’t. It’s an autoimmune disorder, as I explained earlier.

Many people have PD, a lot fewer get GBS. Statistically, because PD is common, there are bound to be people who have had GBS, but there will be very few - the number who have responded to this thread shows almost exactly the statistical ratio you would expect from the frequency of both conditions.

There is no conspiracy among all the eminent neurologists who say there is no association to be in denial. They know what they are talking about, with full knowledge of both conditions. Just because they may happen in one person does not make a causative association, any more than my Type 1 diabetes or Ulcerative Colitis is a cause of PD. It’s bad luck, if you believe in such things.


#10

My question is, if you are diagnosed with dementia, why don’t drs give you carbidopa/levodopa just in case it is Parkinson’s. Stay on it for a year or so and see if you are better or no worse. Five years ago, my mother was unable to do her shopping and banking and taking care of her dog became impossible for her. She thought she had arthritis and that was the reason she couldn’t write and read her lists anymore to remind her what to do every day. Ability to write legibly is a symptom of Parkinson’s. I’ve watched her short term memory go, her ability to remember what she was watching on tv, her long term memory, inability to remember her husband who had passed away six years now after 56 years of marriage. After years of being able to take her own meds, she no longer could. I made an appt with her neurologist and told him I think something else is going on with her. Her walking was getting so much worse, she didn’t want to write anymore at all. She was diagnosed with dementia and prescribed a med to help with that and what he thought was also some depression. After several years of getting worse, she had a stroke and when she was back at home a physical therapist came to work with her and told us to get her back to the neurologist and ask about Parkinson’s. We wasted five years that she could have been on PD’s meds, carbidopa, levodopa which would have saved some memory loss and/or slowed down memory loss and brain function. Research has shown that by the time motor symptoms of PD appear, approximately 60-80% of the dopamine-producing neurons in the brain have been damaged or destroyed. Why wouldn’t you just put patients on carbi/levo in the beginning. It doesn’t harm the body. Why wouldn’t drs do that to help save your ability to live well for as long as possible?


#11

Hi all I have also had GBS and there is no connection between PD. Which my neurologist has said. This has been brought up before on the forum. X


#12

There are several different forms of GB… viral, bacterial, and autonomic neuropathies. The autonomic neuropathies, when left untreated or become untreatable, spreads (so to speak)… what happens is the mediation of the neuropathic process is handed off from the spine to the brain. The brain manages neuropathic processes through the pain matrix. Neuropathic signaling through the pain matrix for a prolonged period is turning out to have significant consequences… PTSD, Parkinsonism, PD, Complex Regional Pain Syndrome, systemic neuropathies (even in internal organs)… GB is a disease where the peripheral nerves were attacked by something (virus, bacteria, or immune system). The peripheral nervous system communicates directly with the brain, and prolonged peripheral nerve over-excitation transfers to the brain to set up over-excitation in the brain.