Endoscopy

[Malori]

It is time for me to have an endoscope due to the fact that I have follicular lymphoma in the duodenum. My oncologist did order an MRI a few months ago and it looked good. I am thinking about not having the endoscope and just depending on the results of the MRI because it seems like PALS throat, etc. are fragile and I do not want mine damaged. Any thoughts and recommendations on this?

 

[Nikki J]

That is a tough one. Follicular lymphoma is not generally aggressive as you know but I believe you also seem to have slow progressing ALS? I think I would discuss with oncology and neurology whether it is worth continuing surveillance. I don’t know that the endoscopy is particularly risky for you but I would discuss all the possible findings and what you would do in each case. I only consider tests that are actionable these days. It may be that you can get your doctors talking to each other

 

[Malori]

Yes, what action would I take if it does become problematic, is something I’ve been considering in light of ALS. Thank you for your thoughts.
As far as slow progressing, I surely hope so. Just my non dominant hand and arm so far. Fasciculations all over, weakness in both legs, but not loss of use thankfully.

 

[KimT]

I'm having a colonoscopy and endoscopy on Thursday. I've been having a lot of gastric trouble and have suffered with GERD for years. My neurologist at Mayo cleared me for the procedure.

 

[Malori]

Good to know. I pray it goes well for you!

 

[Mana]

Hi Kim, Hope your procedures go smoothly and painlessly. So sorry you need them. One of my husband's first silver linings after diagnosis was the thought that he'd never need another colonoscopy. The prep is hard, even on perfectly healthy people. Sending you lots of strong energy!
XO
Mana

 

[Mana]

Malori, I hope that you will follow Niki's advice. It is spot on. Hope that you don't need the endoscopy and wish you well.

 

[KimT]

Thanks Mana, I'll be knocked out and have had both procedures in 2018 with the same doctor so I know what to expect. I had been doing the send-in test the last two times and I had the option to just get the endoscopy but since they were knocking me out I decided to get both.

 

[Malori]

Thank you!

 

[Malori]

Praying everything goes well today!

 

[KimT]

Everything looks good on both ends! He did a few biopsies to check for inflammation. Interestingly, my gasto also has bad GERD and we talked a lot about what works for him.

This might be TMI but it could help another PALS. I told him I started using liquid glycerin (different than the suppositories) and it is the best thing I've ever found for constipation (which I have secondary to medication and not being as active as before.). He told me he takes glycerin suppositories when he travels but will try the liquid ones at home.

Attached is what I use and it works in less than 2 minutes for me.

 

[Malori]

Interesting. Thanks for the tip. Glad everything looks good.