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?
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Hi I had guillain barrie syndrome in 2004.That was before being diagnosed with PD.
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.
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
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
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.
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.
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.
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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.
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?
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
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.
I am so sorry but research continues and said researchers are studying T-cell receptor change as a biomarker for Parkinson’s disease. The brain’s immune response can be mirrored by alterations in the peripheral immune system. The very same CD4 and CD8 T-cells are active in both GBS and PD. I found a study that demonstrated that CD8 T-cells are involved with the dreaded syncleic acid which is the clumping mess associated with PD. I am actually enrolling in a study at UCSD in California, where I live, that is researching T-cell based biomarkers for autoimmunity involved with Parkinson’Disease. Yes , the very same T-cell biomarkers and autoimmunity involved with GBS. So, there you go! I will keep you posted regarding anything I learn while participating in this study.
Regardless of what Neurologists say, research has indicated that all GBS patients have some CNS involvement.
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Also to Island Mike. Most definitely your DM is associated with gut problems.That is why patients with Type 2 DM who have bypass surgery for weight loss are immediately cured of their DM, without having lost any weight. Researchers are also finding a connection between the gut and PD. I was also involved in a GI study with " The Parkinson’s Institute" in Sunnyvale California, Researchers are studying the connection of PD and the gut.I do not believe in “bad luck”. There are just some things we do not know YET.
Yes my father had GB in his late 40’s, fully recovered and started with early signs of PD in his mid sixties. He died at the age of 84 of PD
I also had AMSAN variant of GBS .
Hi I was just diagnosed with GBS and still in the recovery phase . I still have nerve pain and trouble walking . My Dad had Parkinsons and passed in 2017. So I am wondering if they really are connected somehow . More research needs to be done on this . I am curious where you found all this great information. As I would like to do some research . I’ve always liked researching in the medical field . My Dad was an RN and so are some of my cousins !
Thank you !
i am puzzled as to why you are so confident that PD only affects the substantia nigra and not the brain stem and not outside the CNS. on the contrary, PD damages/kills neurons based all over the body. it kills neurons based in the sympathetic ganglions that innervate the heart. it kills neurons based in the gut. it kills neurons in the retina of the eye. and there are a lot of other places throughout the periphery and CNS where PD damages and then kills neurons. if you mean to say that the most noticeable symptoms of PD are due to PD damaging and then killing of neurons in the substantia nigra, i will be happy to agree.
I have not been on this site for quite awhile. As one physician suggested , “even if there is a connection between GBS and PD , the main thing is just to deal with the PD. in the here and now.” As humans , we feel more comfortable with a reason as things occur. This said, in response to one of you, I am a retired RN/PHN and I love research. I do not know how I found this forum but I assume most of you live in GB however I live in California.
Actually, I came across another interesting tid bit. I need to run this by my neurologist to find out if there is any validity to this research but —
There is a theory that a bacteria called “Disulfavibrio” may be one cause of PD. it gets a little complicated but basically it is a gut infection ( the gut/brain connection) and there is no standard treatment but some antibiotics work to clear it along with diet.
GBS is also caused by a bacteria in combination with a crazy auto immune response . There have been theories that PD could also be auto immune.
Frankly there are too many connections with GBS and PD that , no pun intended, I have a"gut" feeling that there is a connection between the two different neurological conditions.
Anyway, Happy research
Dawnie