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#1 | |||
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Elder
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Hi Wiz
I, too, am one with low BP (same as yours 90/68 is normal for me) and always have problems with IVSM infusions. And I don't take any BP meds...that's just normal for me! I hope all turns out ok with your tests. ![]()
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Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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"Thanks for this!" says: | ewizabeth (03-07-2008) |
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#2 | |||
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Member
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Well - the "story" is this - My neuro's office used to offer infusions there - but their practice is so large - and they have over 80 patients on Tysabri - that they don't do it there, but use centers instead. I do have a hard time believing the local place is full - but it is possible I guess....I might try to call on Monday and see for myself. Of course, the local center is across the street from the neuro's office...which is also across the street from a major hospital. There is a chance it is full - but I guess that just seems hard to believe. The rest of this email is kind of an angry rant b/c I'm so upset and feel so broken-spirited and defeated.... just needed to write it I guess....and hope that maybe someone can relate a little. Today I finally think I made SOME progress on this whole Tysabri journey....I've been trying hard NOT to call and bug my neuro's office or the TOUCH people - but now I am seeing that if I don't follow up on everything - nothing happens. First my neuro's office sent in all of the TOUCH paperwork w/o the doc's signature. ![]() ![]() Called TOUCH today to see where we were with insurance - as they finally received the doc's signature last Friday. So the woman rattles off my benefits to me. I knew my benefits - I could recite them to anyone by heart now. She then told me that the ins co requires prior authorization. I was dumbfounded - and was just like - um - isn't that what you guys were supposed to be doing for the last week?! ![]() I hung up the phone and just cried for 20 minutes. I didn't even think I'd be able to make it to the appt...I was so upset and just feel so defeated. And it's all "stupid" - b/c I cant start the infusions until next Friday (b/c neuro wants me clean from copaxone for a month)....but this process has been going on for 3 weeks. I guess my nerves are just beat - I know it isn't a big deal that I'm not on meds right now for the last 3 weeks - but it freaks me out. That - plus the fact that as I get closer to actually doing the Tysabri - I am nervous. Add to that that I've been in this exacerbation (which I don't know how they call it an exacerbation or flare-up if it's the first time it's happening!) - anyhow - been in this for 10 weeks. I was dx 9 weeks ago today and that is also upsetting to me. I have had 2 courses of week-long IVSM....and the symptoms get better for a week - and then they return and sometimes newer ones come, too. For me - it is a daily struggle not to feel hopeless all the time. Fortunately, there is a large part of me that is a fighter (which came out when dealing with TOUCH and my neuro's office about this whole thing)....but then there are times that I want to wave a white flag b/c I'm just SO tired already. I had my little breakdown for 20 minutes or so (and I'm NOT someone who cries - but for the last 9 weeks - I have cried)....and all I thought was "I can't do this...I don't have this in me." I hate feeling defeated like this. Did make it to neuro's office. He asked how I was and I told him I was upset with him and his office. Then I went on to tell him how sick I've been for the last two weeks and am seemingly getting worse. He did full exam and agreed that I'm definitely declining. ![]() Sorry I ranted so much....I just feel so awful...and I wonder if this "flare-up" is ever going to end and if I'll ever be able to function again even close to how I used to be. ~Keri |
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#3 | |||
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Grand Magnate
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Keri, Hang in there. I am hoping that tysabri does help you. I know that I am walking somewhat better and feel more energy since being on tysabri.
I also wanted to tell you that I had my first and only flare/exacerbration last March and did not start feeling better for several months. IVSM did not help me either. I was dx last April. I started to feel better afterabout 3 months but it was gradual. I still have residual effects from that flare. I have to drive about 50 miles to receive my tysabri treatments, but I do feel that it is worth it. Now I am going to have to find drivers since they will not give me the tysabri anymore without a driver due to benadryl ivs I am receiving. It will be a hassle, but I will figure it out. I know in the first several months that I was dx all I wanted to do was sleep and cry. I had trouble making decisions, did not want to go out, or do anything. Gradually that has all improved. I hope that you see improvements too. ![]() |
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"Thanks for this!" says: | Riverwild (03-08-2008) |
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#4 | |||
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Elder
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Keri
These are the kinds of situations that I brought up at the recent RiskMAP review of the TOUCH program. This is exactly what is NOT supposed to be happening anymore...I am furious for YOU... I am going to copy your post and forward it to Biogen. To the person who is in charge of this program. You are NOT an isolated case. You bet you should call the hospital. They cannot possibly be full. Call the infusion center, they also cannot possibly be full. The TOUCH people are not helping you, they are getting in YOUR way. This is a system that is supposed to run smoothly and in your case it is obviously NOT...they - all of the - are adding stress to YOU and that is not what needs to be happening. The comment from your docs office was totally uncalled for. He's busy and sees a lot of patients? Geez, she needs a little course in how to talk to patients. I am so sorry for what you have gone through. It is totally unnecessary. The washout period as defined by Biogen/Elan is 2 weeks, not a month. Sounds like your neuro is being overly cautious, but maybe that's because he has so many patients. Take care Keri and keep us posted. ![]()
__________________
Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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"Thanks for this!" says: | Riverwild (03-08-2008) |
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#5 | |||
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Grand Magnate
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I just received the results of my bloodwork for liver in the mail (only took 2 days -- had test on Thursday) and everything was within normal ranges. Yay! Now I have to be patient and wait for the results from the antibodies test.
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#6 | |||
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Magnate
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Thanks for jumping in here Cheryl! Your help is appreciated yet again!
![]() I had hoped that MSActivesource had ironed out the wrinkles since I started. I remember what I went through with them when I first started, and after three weeks they hadn't done a damned thing. The garbage about the paperwork that was sitting right in front of them, their little cheerful welcome call when I made the girl cry, the "oh yeah, didn't anyone call you yet about that?" etc. This whole program doesn't seem to have improved. Too many people are getting the run around. Incorrect information gets passed out as fact. No investigation is done on coverage and co-pay. Faxes are lost. Med doesn't come. There's a different answer every time a new person signs up. I am willing to do whatever I have to, to get this crap straightened out. If phone calls, letters or standing out front with a sign will work, please give me some input. I'm putting together a timeline on what I have been through, between no information being available, different person every time I call, etc. My side of the ballgame is on top of everything. Infusion center faxes the stuff in front of me, Dr. signs and faxes in front of me, I get a copy with the time of the fax right on it, yet Biogen says again...we didn't get the fax...my pharmacist at the hospital keeps an extra vial on hand now because they can't get their thumb out of their backside long enough to fax the specialty pharmacy on time!! It's gone on too long! ![]()
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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"Thanks for this!" says: | tovaxin_lab_rat (03-08-2008) |
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#7 | |||
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Magnate
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Quote:
I am so glad that your liver is looking lovely! ![]() Please let us know how the antibody test turns out! ![]()
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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"Thanks for this!" says: | barb02 (03-08-2008) |
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#8 | |||
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Elder
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RW --
You and I both KNOW who we need to talk to at Biogen. I think it's time we did some politiking...I am game if you are... Plus the fact that I am headed to DC in May for some political stuff to do with MS and I am sure Biogen is going to be there....shall we? They are already know me by sight. ![]()
__________________
Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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"Thanks for this!" says: | Riverwild (03-12-2008) |
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#9 | |||
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Magnate
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Quote:
I am sorry you are dealing with the incompetence of all parties involved. You shouldn't have to go through this. I wish it could be as simple for you as possible. I was under the impression that things had improved. I know when I started, I had to do some major screaming to get things rolling, but that was a year ago! I'd forgotten what it was like to get the people at MSActivesource going. Your post reminded me and it makes me very angry that this is still happening. ![]()
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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