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  #1  
Old Wed Jan 9, 2019, 05:22 PM
DanL DanL is offline
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Guillan Barre

I have had a very interesting transplant journey and have recently been diagnosed with Guillan Barre Syndrome. No vaccines or obvious food poisoning associated with it, but I did have a pretty bad cold several months back. I am wondering if anybody else was hit with this fun complication.

My doctor said they see about 2 cases per year out of 400 transplants completed each year, so it is pretty darned uncommon. We caught this relatively early as i am not completely paralyzed, but I have neuropathy from the shoulders down and all the way across. I can barely feel anything when touched, and have virtually no reflexes from the hips down, which makes walking challenging, but not impossible.

I was treated with 5 days of IVIG, which seems to be the standard, and I am being kept on immune suppression since this is basically an auto-immune disease not too different from GVHD in what it does. It basically demyelenates the axons in your central nervous system, so your nerves don't fire properly. If caught late, it can lead to severe paralysis, intubation, inability to speak, eat, cough, etc.

Anybody else out there have this experience?

Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD.
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  #2  
Old Wed Jan 9, 2019, 06:33 PM
Neil Cuadra Neil Cuadra is offline
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Dan,

I'm sorry to hear about your new diagnosis, but glad they caught it early. Notice that Guillain ends with "ain" if you're going to search for more about it.

Two cases of Guillain-Barré out of 400 is much more than the 1-in-100,000 incidence in the general population. It's an area of study, but tricky because of the small number of cases.

I hope your treatment is effective and it won't become the chronic type they call CIDP. Good luck.
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Old Fri Jan 11, 2019, 10:49 PM
Hopeful Hopeful is offline
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Dan,

I am so sorry to hear of this unfair complication! It is good that they caught it early. Do your doctors think the duration of the syndrome will be shorter because of your limited immune system?

Sending healing thoughts and payers your way...
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Sat Jan 12, 2019, 05:08 PM
DanL DanL is offline
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@neil, thanks for the catch on the misspelling, it was a typo. The incidence rate is difficult as they sometimes have a hard time differentiating and categorizing CNS GvHD vs Guillain Barre, so it is possible that the rate is higher or lower. I did notice a study that used an MS drug to treat CNS GvHD, wondering if it could be used to treat GBS as well??

@hopeful, as always thanks for the good thoughts. The doctors are really reluctant to say anything about duration or expectations of disease progression or improvement as it is so relatively uncommon. I am going in for an EMG in a little over a week to see if we can get a better understanding of prognosis going forward.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD.
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Old Sun Jan 13, 2019, 09:13 AM
Marlene Marlene is offline
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I'm so sorry you have to deal with this complication. A very frightening complication. I hope it reverses itself quickly so you can heal.

John had to deal with CNS and peripheral nerve damage from his treatment so we understand how frustrating it must be for you. It can take a while for nerves to heal so be patient and remain hopeful. John would have improvements, then plateau for a while.

Wishing you only the best....Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Sun Jan 13, 2019, 07:24 PM
Rarity Rarity is offline
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I too am sorry you are dealing with this issue. Stay positive. You are so helpful to others.

Rarity
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  #7  
Old Tue Jan 15, 2019, 11:17 PM
DanL DanL is offline
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One of the reasons that I have been an active member of this forum is that I have always found support and great information from the members. Once again, thank you all for the support.

Being diagnosed with this illness has been very interesting to me that I have been through a lot, and this is the first time that I have experienced frustration and some element of depression. Because the overall feeling is like having severe neuropathy head to toe, it really takes the energy out of me and means that I am having to really lower my expectations of myself on a daily basis, which is hard for me as I like to go until I drop. It seems that I drop quickly ugh.

This event is the challenge that I wasn't prepared for, so it seems like it is taking a while to regain the full blown positive attitude that I rely on.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD.
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Old Wed Jan 16, 2019, 09:20 AM
Marlene Marlene is offline
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support resource for neuropathies

In case you feel up to it, here's a link to a neuropathy board you may find helpful. Everyone on this board is dealing with some form of CNS/peripheral nerve damage from various causes...autoimmune, toxicity, nutritional, accidents, diabetes, hereditary, etc. It's been more active in the past but there's a wealth of knowledge stored there. People try many approaches to address the pain and healing. There's not a one size fits all approach.

This was a huge quality of life issue for John too. It can get better and you can heal but it is a slow process. Even after all these years, he still has some nerve damage but no where near the severity it was back in the early months/year after treatment.

https://www.neurotalk.org/forum20/
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Sun Jan 20, 2019, 02:07 AM
Hopeful Hopeful is offline
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Hi Dan,

It is okay to be mad or saddened by this setback, but this is just a setback and not an ending to your story.

You can recover from this and there are many here rooting for you. Set smaller goals for yoursel and celebrate those victories.

I found this interesting article on the treatment of GBS. Many of the patients described had good success with multiple rounds of IVIG, sometimes in combination with plasma pheresis. It may be worthwhile discussing it with your doctor.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5803090/
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #10  
Old Sun Jan 20, 2019, 03:26 AM
DanL DanL is offline
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Thank you for the link to the study. This will be a good foundation to speak from with my doctors this week. I am seeing the neurologist, getting an EMG, and seeing the oncologist as well. I have been struggling to find recent articles that are this specific.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD.
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