Day 12 Entocort -I think?

[Gloria]

Rich,

Whoa - that's quite a schedule. You really do put on the flying miles. I hope all goes well in your travels.

Gloria

[tex]

Regarding my side effects, I had a really weird episode last Saturday and Sunday. My wife took me to the ER Sunday and apparently I couldn't remember my birthday or even what day it was, and my right arm was numb and my abdomen was really sore. Honestly, I don't remember anything that happened that day. My wife told me they CT scanned my head and checked my heart, drew blood, etc. They were apparently worried about a stroke.

As you are probably aware, I have a fair amount of peripheral neuropathy, which I attribute to permanent, (residual), gluten damage. Diabetes is the primary cause of peripheral neuropathy, but since I'm not a diabetic, and I haven't used any drugs that could cause such symptoms, there's nothing else to blame it on, except gluten. With that in mind, be advised that I have had two TIA-like events, similar to what you described, within the recent past. I'm sure you know what a TIA is, but just in case someone else reading this does not, a TIA is a Transient Ischemic Event, (sometimes called a mini-stroke, and it's considered to be a precursor to a stroke). The first was on July 19, last year, and the last was May 5, this year. On both occasions, my right arm was numb, and so was the right half of my face, (no loss of motion, nor significant loss of strength - only numbness). In my case, though, my memory was not affected, and I had absolutely no pain. My right leg was not noticeably affected. CT scans, MRI brain and carotid artery scans, EKG, x-rays of my lungs, and echocardiograms of my heart and carotids, were all normal. So I am now considered to be a high risk for stroke, (because it has happened twice), even though no clues have been discovered.

I believe that gluten damage is the cause, but, of course, there's no way to know for sure, so I have to take all sorts of stroke-prevention precautions. In your case, the problem could have been Entocort, gluten, or something else.

Just in case it might have been due to an embolism, however, please be aware that a significant percentage of people who travel by air, suffer from deep vein thrombosis, but are never even aware of the problem. (When was the last time you flew? If it was Thursday, Friday, or Saturday, then DVT is definitely suspect.) Presumably, especially since flying puts you at a heightened risk, your doctor prescribed a daily baby aspirin, or Plavix. If he or she didn't, you might want to discuss that issue with him/her.

Tex

[hoosier1]

Tex,

I have wondered about thrombosis at altitude. I will bring this up with my doctor when I see him, and yes, I had just flown quite a bit before last weekend...

You bring up such logical issues. Appreciate that. I think we may share PN issues as well. Seems my test results for nerve pain and like issues always come back negative...

[Linda in BC]

Oh my, Rich! You are a trooper!!! What a schedule! All that travelling and trying to sort out drugs and diet and this whole MC thing, and still positive words for everyone! Some of us (read me) get nervous about just going away from home for a few days! I am off to three days of meetings later this week but will try to keep it all in perspective, using your courage as inspirtation.

Just a note about diet and travelling... when someone from Australia (I think it was Lyn) told us about how the chef at a conference she was at prepared special, delicious foods just for her, I was quite envious as I have never had that happen. Even when they asked about special dietary requirements and I would list DF ( before I knew about My G intolerance) they just seemed to ignore it! Anyhow, for this conference that I am going to next week, the girl coordinating it asked and I responded with what I could eat and could not eat, and got several inquiries back as to "Would this work or that work?", and she said that the chef was really trying to accommodate me. Wow! I guess things are finally changing with more and more people expressing their needs, and the cooking field becoming educated on food intolerances.

Linda

[hoosier1]

Hi Linda,

I find it amazing you view me as a positive person. I have always been a "glass is half empty" person in my own mind. But maybe I need to take a second look at myself. I spent years hearing "it's IBS" and knew it really wasn't. I became very bitter. My symptoms were just too severe and so similar to those of my grandfather who developed UC after coming home from WW2 for me to accept the "waste can" diagnosis of IBS. Ok, I am now off my soap box.

But I truly do want to share things that have helped me, with others, especially because I know I have been poorly managed by my doctors over the years and had to find ways to cope, especially when my symptoms evolved.

I am glad you can use me as an inspiration, but as I have stated in previous posts, I am merely doing what I need to do to exist through what I call the vanity of life. If I had the means right now, I would slow down significantly. Fortunately and unfortunately, I have a group of people, and their families, that depend on me to keep the business going. I can't let them down. Any small business owner I am sure can relate. And for me, that is a lot of stress (and I don't handle stress well... a huge frailty of mine) with this responsibility.

I think it is so cool you found a chef to accommodate your event away from home!! I recently went to a function where they tried to accommodate me but I suspect they didn't. But I also spent some time educating a young waiter at Outback Steakhouse about why their gluten-free diet is so important to people like us. He really wanted to learn. I was impressed. So we all need to continue the crusade, just as you are doing. And to be frank, I see you as more courageous than me by orders of magnitudes. I have grown accustomed to throwing myself around the country and picking myself off the floor, literally, at times. I simply know this is (hopefully was) a part of my life. For you, you are more accustomed to your daily surroundings and regular routine I am guessing. So when someone with a routine enters the realm of the unknown, things can be quite daunting. You are the true inspiration.

You, dear, have also seemed to have it figured out. Plan, plan, plan. Find advocates you can trust at your destinations, and simply, relax and have a good time. I am soon to turn 45 and am only recently learning these things.

I wish you all the best and look forward to hearing from you soon. Keep your fingers crossed for me over the next couple weeks, even I am intimidated by what is before me.

Regards,

Rich

[Linda in BC]

Rich, with your comment

But I truly do want to share things that have helped me, with others, especially because I know I have been poorly managed by my doctors over the years and had to find ways to cope, especially when my symptoms evolved.

I think you really captured the essence of why so many continue to read and post on this site, many wonderful people even long after they have achieved remission. They know how terrible it is to suffer like that, alone, and get no help from those who are supposed to help you. For 13 years, after diagnoses, I was left alone to cope, until I found this site last June. Hard not to be a little bitter!

Feeling you have no choice but to travel no doubt helps you find the strength to do it, but not everyone could, even so. So don't short change yourself. What you do is quite remarkable, and probably this group of people knows just how remarkable, more than any other on the face of the earth!!!

for you over the next few weeks.

Linda