Linda,
I went off Ampyra for the month or so while waiting for the insurance to get with the program. I felt that I also went downhill on the walking. My problem is that when I went back on, it didn't seem to improve. I am not sure if it is due to weather ( rain and rain and rain and that damp bone chilling cold!) or it's just the luck of the draw. I am going to finish my prescription out to see if it gets better. If not, I am done with it.

I'm glad to hear things are calming down for you and that you have your new place. Nest and have fun getting to know you again. We're pulling for you!

My MRI came back lovely. No new lesions, no enhancing lesions, the big ol' nasty one is gone! I have a series of updates on immunizations this week so I am planning to feel carppy. I'm waiting on bloodwork and also have my infusion. I've been given the ok for having both from the neuro, he just told me to take it easy if I don't feel well. Hard to do when there's so much going on. I've spoken with the new insurance company and they are going to run a test billing for me to see what the coverage will end up costing me. If it's too much I have to explore other ways of billing this with the doc. If anyone has Aetna please let me know how it works out for you as far as out of pocket expenses for infusion?

Hanging in there!

RW, I am sending all good thoughts for you to feel/be well with all you have going on!!! AND that Aetna will be soooo good for/to you!!!
Linda

thanks shayna
#7 down last friday. i guess i need to take benadryl because i'm breaking out all over! back of my head, left wrist, left side of my face! how annoying. Major fatigue since the treatment as well.......

the stick went ok, got it on 2nd location tried and didnt hurt much this time. i am seriously thinking of putting in a "central line" or what have you, but i will need feedback from others that have this first. cya all later so tired!

Linda, I hope you've settled in and are beginning to adjust to your new life

RW, WTG!!!!!!! Let that crappy insurance pay for all of the tests and meds. It's the perfect way to say "good-bye"

Legz, I know that heat can make m.s. symptoms worse. I haven't noticed any difference since I've been on Ty. But, now that you mention it I have been feeling more nauseous lately. Perhaps it is the heat. I live in the desert and this is the first summer it has really bothered me

Clarkstar, I'm so glad the "stick" went better this time. I need benadryl with every infusion or I'm a scratchy itchy mess

My ongoing saga of infections continues. If it isn't a sinus/ear infection it's a viral infection....shingles.....or a fungal infection...topical yeast infections. I've always had these problems but now they are happening so often it's absurd!!!!!!!!!! I've delayed my next infusion until next Thursday because of the shingles At least the other infections don't interfere with the infusions.

I'm looking forward to #46 because I feel so drained right now. Yes, the infusions make me very tired for several days but, after I recover I do feel a bit peppier Of course, the fact that I just returned from a week in California with my grandchildren probably doesn't help the fatigue. But, I noticed I was much more fatigued than I usually am. Perhaps it's due to the warmer weather or the constant infections. I just want my Ty fix....LOL

BTW, has anyone ever tried the Candida diet for yeast infections?????? And, does anyone else find they are more prone to infections while on Ty than they were before Ty???? I'm not giving up my Ty because of these darn infections but, I am curious. As I said I've always been prone to getting them but they seem to be occurring more frequently now.

huge hugs to all,
Shayna

Hi Shayna,

I started getting a bad UTI every time I got a Tysabri infusion so they switched me over to every 8 weeks. That stopped them! The last time was 7 weeks and I seem to be okay on that so I may try for 7 in the future. I also have gotten some skin staph infections, maybe one every 6-7 months or so--it wasn't MRSA, just regular staph but it needed antibiotics every time to get rid of it. And then promptly I got a stubborn yeast infection from the antibiotics. Strangely the staph is usually on my neck or behind my ears. My neurologist told me that he has seen Tysabri patients get more staph skin infections then people not on Tysabri.

Good luck beating your infections. They sound awful. A candida free diet sounds like a great idea.

I went for #46 the other day. It went well...just a bit more bruising this time.

Natalie, thanks for your info. I've tried going longer between infusions and it just doesn't work for me. I need my Ty every 4 weeks or so.

I'm trying the Candida diet but it's soooooo hard....LOL I never realized before how many things I ate had yeast or sugar. I don't normally eat sweets and I've always cut down on bread and cheese because they're so high in sodium. But, this diet is very limiting. I hope it's worth it!!!!!!!!!!!!!!!!!! So far no difference in the topical yeast infection

I read about the newest PML cases. I haven't found any info yet about whether or not they had received the JCV-PML blood test. Does anyone have any info other than the number of new cases and the new deaths????? DH is bugging me again.

tia.....have a great weekend...hugs,
Shayna

shayna, you'll find some information here:

http://www.marketwatch.com/Story/sto...4-E8151C011B01

I tried Betaseron and could not take it due to liver issues, then I tried Copaxone for years but too many exacerbations so we did bloodwork to see if we can change over to Tysabri. I'm scared to death about and its consequences. We need to wait until September to meet with him again. I plan on reading all 3 of these threads. Thank you for all the thoughts and ideas.

Eric

I'm waiting to get #29. My appointment was at 11:30 and it is now 1 pm and they still don't have a chair for me. It seems there was a mix up with scheduling and then a doctor took the extra room with 1 chair which they aren't supposed to do. I'm a tad annoyed! Given that my infusion takes twice the normal length of time I'll be getting out in rush hour traffic. Ergh. I just need to be hooked up now!!!

Other than that I can't believe I'm this far along, only one away from #30 and on it for 3+ years!--I do love my Tysabri.

I had # 54 on Monday. I don't know what I will owe and how it will be charged. They sent me some paperwork that essentially told me that I had insurance. It didn't help tell me what I am going to have to pay, but I went ahead and had the infusion anyway because for sure I am NOT going off Tysabri!

Other than insurance, no problem, no concerns. The nurse felt the need to call the doc and ask if she should give me the infusion, because I have sun poisoning. He told her to give it to me before I came to his door and started bothering him...LOL!

Waiting for the first bill post perfect insurance...