My husband's diagnosis

Marcia K · Post by **Marcia K** » Thu Jun 01, 2017 4:46 pm

Hello! Four months and 12 days after my husband couldn't get out of bed because he couldn't move, we have a diagnosis! He has Chronic Inflammatory Demyelinating Polyneuropathy (CIPD), which is a relative of Guillain-Barre Syndrome (my original guess) because it occurred 3 days after a flu shot. The Neurologist said it was most likely caused by the flu shot. It's been a long journey and it's been hard to watch him suffer, but I am grateful for a diagnosis and treatment. He is going to start with I.V. steroids 3xweek and then 1xweek for four weeks. Some patients get better, some need lifelong treatment so at this point we have no idea what the long term prognosis is. Everyone has their own thoughts about the flu vaccine; I'll just say that this isn't as uncommon as the government would like you to believe. The thoughts and prayers of family and friends have helped us through this dark time and I am grateful to God that the D has not returned in spite of having many days that I wanted to curl into a ball. I'm grateful for my family here, too!

Post by **tex** » Thu Jun 01, 2017 5:37 pm

Marcia,

I'm so sorry this happened, but at least now he has a treatment plan.

I wish the best of luck to him. Hopefully it will be resolved without a need for long-term treatment.

Absolutely amazing that your MC didn't act up.

Tex

Marcia K · Post by **Marcia K** » Thu Jun 01, 2017 7:30 pm

Thank you, Tex. It is amazing that the MC hasn't reared its head, I am beyond grateful for that! There were days when my body hurt all over but I could live with that.

crervin · Post by **crervin** » Thu Jun 01, 2017 7:33 pm

You and your husband have been in my thoughts and prayers! So glad you guys have a treatment plan. This is so scary, I will still never know where to stand on vaccines. Its like Russian roulette....

Will continue to pray for a full recovery!

Erica P-G · Post by **Erica P-G** » Thu Jun 01, 2017 8:45 pm

Wow Marcia, that's incredible! My thoughts and prayers are with you and your family....here's to knowing and learning how to heal and build from here.

Hugs
Erica

twirlitgirl · Post by **twirlitgirl** » Fri Jun 02, 2017 2:10 am

Marcia K,
Wow! my thoughts and prayers are with you and your family. Cannot imagine how hard and stressful it has been. big hugs take care

Blueberry · Post by **Blueberry** » Fri Jun 02, 2017 7:17 am

Very best of luck to your husband! I hope treatment works well.

If it might help, recently read about the pioneering work of Sister Elizabeth Kenny. She was popular in her day. Hollywood made a popular movie about her life. Sister Kenny is credited with creating physical therapy, therapy used today with patients that experience mobility issues.

Sister Kenny's original work was with patients that had polio/ Guillain-Barre Syndrome. She experienced quite a bit of success with her treatments. I just thought to bring it up if her writings and movie made about her work might help with your husband.

Gabes-Apg · Post by **Gabes-Apg** » Fri Jun 02, 2017 6:10 pm

Marcia
glad that you finally have a diagnosis

if it makes you feel any better, things like anesthetic affect my myelin.
and we resolved this via things like B12, B5, Vit D3 and magnesium.

checking my nutrient text book nutrients recommended for Demyelination are B5, B12, phosphatidylserine

hope this helps.

Marcia K · Post by **Marcia K** » Fri Jun 02, 2017 8:05 pm

Thanks, ladies. It's a relief to know what we're dealing with and now we can move forward. A nurse is coming to our house tomorrow for the I.V. steroid administration. Apparently this way is less costly for our health insurance. I hate to think what the steroids will do to his system but that's the Neurologist's treatment plan.

Blue, I will check out Sister Kenny. Thank you for sharing her information.

Gabes, I will be sure he gets those nutrients. Thank you!

jlbattin · Post by **jlbattin** » Sat Jun 03, 2017 8:41 am

Wow..........so thankful you have a diagnosis...........that's so very scary! Prayers for a speedy recovery!

HockeyMom · Post by **HockeyMom** » Sat Jun 03, 2017 9:44 am

Wow, hope he continues to progress. Vaccines are tough...I personally have had 2 patients in my hospital as my patients who ended up with Guillian Barre after having vaccines for chicken pox...

Laine

Marcia K · Post by **Marcia K** » Sat Jun 03, 2017 5:32 pm

Thanks, Jari & Laine. He had the first IV steroids today and he's feeling better already. Not sure if it acts that quickly or he just thinks so, but he said he can bend his ankles further than he could before. Tomorrow and Monday we have to connect the medication to the IV catheter so I hope we're up to the task! The nurse won't come back to the house for a week when it's time to insert the I.V. again. There are many issues that can arise from the steroids, but I'm feeling hopeful.

JFR · Post by **JFR** » Sat Jun 03, 2017 7:11 pm

What a scary time for your husband and you. At least now there is a diagnosis and a treatment. I hope for a full recovery.

Jean

Janie · Post by **Janie** » Sun Jun 04, 2017 10:28 am

Keeping fingers and toes crossed along with prayers for him, and no issues with the steroids.

Marcia K · Post by **Marcia K** » Mon Jun 05, 2017 7:17 pm

Thanks, Jean & Janie! I found a support group for CIDP and I think they will be helpful like our group here. They all seem very supportive and encouraging to everyone. Our journeys are easier to travel when we know that we're not alone.