I Need Some Help Please

[KatieAgain]

I know none of us are doctors, but I need to try and stay on this drug. I will be devastated if I am taken off.

I am experiencing unexplained swelling of the eyes and fingers. I have gained about 7 pounds of water weight. My legs are not swelling. Been having it for about 10 days now. Blood Draws are done at each infusion so my last on 24 Jan was all good to include liver and kidney functions.

My MS Specialist is on the road right now and I have been told to get my butt to my Civilian PCP and have him test me for everything possible that could be causing the swelling.

So I know he wants my liver and kidney functions rechecked and also my hormones (I am Perimenopause). I am also thinking thyroid.

Do you all know of any possible causes of swelling? Anything. I plan on going in with a laundry list. I am scheduled for another infusion next Friday and I am going to be exceptionally proactive about getting approval. So if y'all can think of anything, please provide your input.

Do I sound desperate? I am!!!!!!

Thanks!

[Kimba22]

Do you all know of any possible causes of swelling? Anything.

Hi KatieAgain,

So sorry to hear about the swelling and water weight gain!
I hope your doctor figures it out, soon, and the cause turns out to be something minor. (I also hope it's not a reaction from the Tysabri!)

I bet you already did a search, but here's a link about some possible causes of edema, anyway: http://www.webmd.com/heart-disease/h...edema-overview

Sorry I couldn't be more helpful. I'll be thinking of you!

Take care,

[KatieAgain]

Thank you Kimba. I hope it isn't either. Unfortunately, I went into anaphylactic shock from one med, passed out from another...so this is being taken seriously.

This could be a delayed allergic reaction to the Tysabri, it could be the start of kidney or liver issues or something rather benign such as hormones.

But I have relayed to everyone, "Kidney Failure is acceptable, Liver Failure is acceptable, MS Failure is NOT an Option." If those cervical lesions have not disappeared it will probably be lights out for Katie.

Apparently I am going to be spending Thursday and Friday getting tests. Everyone is being kind and jumping through hoops for me.

I was doing so good...but I have this really sick feeling that I am headed back to the place I was last year...and that truly is not acceptable. So not acceptable. I am beyond depressed...

[pennstater]

Katie,

Thoughts and prayers are with you. I do hope you get quick answers and Ty is not related. I do remember some of your previous posts and know Ty helped a lot.

Hope it resolves quickly for you.

[Picture me]

Hi KatieAgain! Sorry to here about your newest weird symptom. Here's a long shot... I had this once. I woke up one morning and had swelling in my hands and in my eyelids too. My hands actually looked like baseball gloves. After a lengthy investigation I found out it was irritant dermatitis caused from having my rugs cleaned . The chemicals only affected my eyes and hands and not until I had been around them for over a week. A friend of mine had a similar reaction from having her comforter dry cleaned. Here's hoping it is caused by something easily treatable like this. Good luck Good thoughts going out to you Katie.

[bree2013]

Apparently I am going to be spending Thursday and Friday getting tests. Everyone is being kind and jumping through hoops for me.

I was doing so good...but I have this really sick feeling that I am headed back to the place I was last year...and that truly is not acceptable. So not acceptable. I am beyond depressed...

I can't offer any suggestions for causes of your swelling -- just want you to know good thoughts going out your way that it's NOT related to the TY.

Please keep us posted Katie - Hang in there!

Bree

[MS Diva]

KatieAgain- Did you ever get any answers about your swelling causes? I have the same unexplained swelling on single side of tongue or on my feet.

[KatieAgain]

Hi MS Diva-

Yes and no. I had a severe....and I mean severe iron deficiency. We are assuming the ulcers were bleeding. The iron deficiency is being addressed and the ulcers are now healed.

They have not ruled out Thyroid and Hormones yet....in fact some blood was sent back for further testing. Estrogen was totally messed up, thyroid was borderline.

Kidney and Liver Functions were totally normal.

Besides the ulcers and possibly hormones there was a drug that I was put on to recently put on to prevent Migraines. After a lot of research from my Oncologist it can cause drug fever and edema. Has a half life of 90 hours which meant it took 20 days to get out of my system. Being off that drug has helped.

I was able to get a TY infusion, but it was a week late. I am able to get another this Friday.

I hope they find the cause of your swelling. One downside to TY...if something goes wrong...test after test....no fun.

Good luck.