Comments for Collier-Byrd.net

Comment on A Reader’s Story – Kathy’s Success With Gilenya by abdulaziz aljaber

abdulaziz aljaber — Sun, 30 Oct 2011 22:03:30 +0000

hi sara , i am runing a web site in QATAR for MS people here and am a MS pation also , i spend last 5 month using the Gilenya and i gree with you thier is a big defrent realy in feeling the temp of the sround and walking also and the feeling.
sorry my english is not so good i speak arabic
all the best for you and i hope soon i heair good news about you

Comment on Diary Of A Gilenya Pioneer: First Dose by Collier-Byrd.net » Diary Of A Gilenya Pioneer: Fingers Crossed

Collier-Byrd.net » Diary Of A Gilenya Pioneer: Fingers Crossed — Sun, 28 Aug 2011 21:41:12 +0000

[...] months have passed since I began taking Gilenya on May 5. Today I’m focusing on the drug’s possible side effects and how I have personally been [...]

Comment on UPDATED : The MS Hug / Girdle Pain / Girdle Pain Sensation / Squeeze ‘o’ Death by Marissa

Marissa — Tue, 02 Aug 2011 19:41:49 +0000

I really appreciate your post. I have been struggling for 4 years with this and feel like you mirror my symptoms,

I have no DX yet. Seeing my first neuro tomorrow. This symptoms is exactly like yours I am hoping that it could be anything else than MS.

I have been to the ER 3 times in the last 6 months for pain relif have never been on steroids and have a slitlike syrinx or central enlarged canal but this hug is really screwing up my life.

I am still not sure what triggers it and appreciate your insights.

thanx

marissa
south-africa

Comment on Disappointment / Contentment by AnneP

AnneP — Sat, 30 Jul 2011 15:50:37 +0000

Hey Sara, my husband went to play twilight golf and I’m in danger of reaching the end of the internet and lo and behold, I find your blog.

I’m in the metro Atlanta area and was a participant in one of the Gilenya trials and have been taking it now for 2.5 years. Like you, sometimes my body temperature does not seem to maintain – suddenly chilly or warm for no apparent reason. So I guess I’m saying ‘sorry, it will continue but it will happen a little less frequently.’

I agree with the heat being particularly hard to deal with this summer also; but honestly, is it Gilenya or just the crappy air quality overall I can’t say.

Anyway, I hope Gilenya does for you what it’s done for me: no relapses!!

Comment on Gilenya Speedbumps by Sara

Sara — Thu, 21 Jul 2011 19:40:59 +0000

They have plenty of “say” in it already. They need less. Essentially their job is to make a profit which means providing the least amount of care possible while still providing just enough care and campaign contributions to keep us quiet enough for them to stay in business. A person’s health and life should not be determined by a profit margin.

Comment on Gilenya Speedbumps by Will

Will — Thu, 21 Jul 2011 18:47:28 +0000

If we’re talking about the insurance company I agree, but in this case we’re talking about a patient that has tried several other MS medications with no success. Gilenya is one of the only options available to her and the problems we were dealing with are normal insurance company dragging their feet issues. If you’ll read the other posts about Sara’s working to get on Gilenya you will get a better understanding of what we were dealing with.

The bottom line is we contract with the insurance company to provide us a service and when they fail to do that they are in breach of contract. I know they have to look out for their bottom line so they should have some say in the prescription process, but the ultimate decision should be up to the doctor and patient which is the problem with the US healthcare system.

Comment on Gilenya Speedbumps by BBB

BBB — Thu, 21 Jul 2011 18:20:09 +0000

They are paying for the drug why shouldnt they get a say in it?

Comment on UPDATED : The MS Hug / Girdle Pain / Girdle Pain Sensation / Squeeze ‘o’ Death by Kate

Kate — Mon, 02 May 2011 01:14:29 +0000

I hate that you have to go through this, Sara. I hope that you can get started on the new meds soon!

Comment on A Reader’s Story – Kathy’s Success With Gilenya by Sara

Sara — Sat, 30 Apr 2011 03:38:03 +0000

Congratulations on your 10th! I actually (hopefully) will start Gilenya next Thursday depending on work. These storms across the country are keeping us a little more than busy.

Since I quit caffeine I haven’t had any severe or even moderately severe “hugs” until this episode. I know it was the stress that set it off because the pain set in literally seconds after I heard the news on the phone.

I have been sleeping night and day ever since. Healing can be such a slow process!

Comment on A Reader’s Story – Kathy’s Success With Gilenya by Kathy R.

Kathy R. — Fri, 29 Apr 2011 22:41:27 +0000

Sara, I have just spent the past 45 minutes reading about all of your troubles. I too have had the “girdle” sensation, and it was horrible! It was never overly painful, but it was greatly annoying! This was about 15 years ago. I had it for about three months. It went away and has never returned. Thank God…

And what can I say about Novartis? I’m at a loss, as my experience went smoothly. You mentioned that you were “bitchy.” Good! Sometimes getting angry with them is all that you can do. Venting relieves stress! Don’t lose sleep over it. They won’t!

Everything that you are experiencing is truly overwhelming. You feel as if you are all alone becuse nobody else knows how it “feels.” Nobody else is in “our” bodies. Well I know what you are experiencing, and you can vent to ME! Hang in there. You are in my thoughts and prayers.

I don’t know if you are a religious person, Sara. My husband Rich and I have found much comfort in our faith. Sometimes it helps just to know that you are not alone during these difficult days. Lean on Him, as He is always there.

Happy 10th anniversary. Rich and I just celebrated ten years last week!

You mentioned that you started on Gilenya on Thursday. I hope that it went well. Please keep me posted. I really do care…

Kathy R.