Infusion # 44 down, still no problems, no concerns.
I've finally started seeing a medical doctor as well as my neuro. I always get the yearly female stuff checked but have neglected to find a doctor since my favorite NP moved downeast more than a few miles and I figured I better get with the geriatric tests now before they overwhelm me later in life.

Guess what the first one is?


Ahem...have you had a colonoscopy yet?

Of course the doctor had his published on the front page of the local paper, so he's not going to let me get away without one now,is he?
Other than that he is wasting an hour every three months peering at past bloodwork and hemming and hawing over my one point below normal iron and my 101 blood sugar result (without fasting)
I don't like it. I want it all over at once and I'll call when I am sick, I PROMISE! It's a waste of my time and both the insurance company's and my money.

Am I the only one who feels this way? I understand the every three month neuro appt. because of Tysabri but I see no need to lose an hour to a review of past test results and the "how are you feeling" routine every three months! Am I just a throwback to a generation that didn't go whimpering to the doctor all the time or have things changed so much that it's a given that you go even when nothing's wrong?

Riverwild, I agree with you completely. My doctor would like me to have a colonoscopy but so far I've successfully resisted and will continue resisting until I have reasons to think I have something wrong with my colon that a colonoscopy would help to analyze.

I looked up the risk factors for colorectal cancer. There are about a half dozen of them, and I have not one. No relatives of mine have ever had colorectal cancer. I'm not counting a half-brother who had it.

I sometimes think that some tests doctors put people through are done mainly so that the doctors can protect themselves from lawsuits.

There is a questionnaire where you can find out your risk of colon cancer here:

http://www.yourdiseaserisk.wustl.edu...art&quiz=colon

Mine came out "much below average." I'm going to point this out if a doctor suggests a colonoscopy again.

Don't get me wrong folks. I truly would call him if something wasn't right or if I have a question about anything.

I don't even mind having my booster shots and flu shot and all that stuff once a year when it's due. I get all the female stuff done on the same day every year. I even schedule my MRI on the same day if at all possible so I only have to take ONE day out of my life for the tests and maybe another for the followup if anything needs attention, but it's the every three months when nothing is wrong with me that's driving me nuts!

I am going to bring this up with him when I see him next. I am sure he will listen to me since he's already had a good dose of me for the past few appointments. I told him a year ago that I would see him New Year's Eve this year, but it's been every freaking three months since then. I want a list of everything he thinks I need and I want it scheduled ONCE-all at the same time- and then get out of my face until next year unless something comes up.

(i'm getting more feisty as I age or as I feel better or something!)

I had the regular flu shot last year but not the H1N1. My neuro did not recommend the H1N1 last year. This year I went ahead and had the flu shot...which apparently includes the H1N1. I can't take a chance of catching the flu from my grandchildren so I went ahead and took the flu shot since there wasn't a choice this year. It was one shot or nothing at all

RW, I see my primary care physician once a year for a check-up and blood draw....I think he tests for everything because the vampires always take a lot of blood...LOL He prescribes the meds I'm going to need for the year and tells me to come back if I have a problem. The nurse calls me if there is anything in the blood workup that the dr wants to talk about with me. Otherwise I only see him when I need him.

hugs,
Shayna

Calling Biogen and complaining last month has not helped in anyway. I've been waiting. The Team Leader I spoke to said the problem was that the packet my neuro filled out initially did not include the confidentiality clause. That was rectified and my neuro would receive the lab kits in approx a month and begin testing. I saw my neuro yesterday and she still has not received the kits.

I hate Biogen but love Ty!!!!!!!!!!!!!!!!!!!!!!! I'm calling Biogen later this morning and complaining again. My neuro and I discussed what to do if I don't get tested because Biogen is dragging their feet. She said I can take a holiday from Ty if I want to but she doesn't recommend it because I'm doing so well. She also does not recommend that I try anything else...especially the oral meds which are new. I'm doing too well on Ty and she would prefer a holiday for 3-6 months.

Infusion #38 tomorrow. It really feels like I'm playing Russian Roulette. It wasn't this stressful when there wasn't a test out there to check the chances of PML. My neuro said we would discuss what to do if I test positive...if I ever receive the blood draw. Has anyone's neuro suggested that he/she stay on Ty even with a positive PML/JCV blood test????? I've only heard about those who have received a negative on their blood draw. If I'm correct the test tells whether or not one is more susceptible to PML.

I'm trying to stay calm and take it one day at a time. If I ever get tested and the test is positive I'll try to make an informed decision then. Hopefully, my neuro will have some info for me.

I'll let you know if I get anywhere with Biogen. I'm sorry I haven't been checking in regularly but, I'm really trying not to think about PML.

Oh...one other thing to mention. I told my neuro yesterday that the longer I'm on Ty the more fatigued I am. We don't know if it's due to the Ty or the fact that I can exercise more and for longer periods of time the longer I'm on Ty. If it weren't for caffeine or Provigil I don't think I could stay awake for more than a few hours...LOL There are days when it feels like the only things I am able to do are exercise, run an errand or two and sleep. I'm too tired to even see friends. When I go to visit my grandchildren for a week or so I don't exercise at all. I still need a nap during the day but I feel that playing with them is all the exercise I can handle...LOL

hugs to all....I hope everyone has a wonderful day,
Shayna

Sorry to hear that you are still having problems with the study, Shayna!
I've heard that a few people have had delays but it truly should be very easy once the necessary parts are in place.

I think we should all remember that testing negative/positive only means that you tested negative/positive. We don't know how the JC virus is transmitted. We don't know where it comes from. One could test negative today and be exposed and be positive next week...no one knows yet. Hopefully, this study will lead to more answers.

As for being tired, I still have fatigue. It isn't as bad as it used to be but I still take provigil almost every day. I still have spasticity, even though it's not as bad as it used to be, I wear myself out every day because I have always done that, even now I don't listen to my body until I am screwing stuff up and figure out it's time to shut down and rest and I am not sure if that has anything to do with Tysabri or not. I think it's just me...

MS still sucks even though it's easier now than it was during serial relapses!

Shayna,

You may want to look at this study with your neuro.

http://www.doctorslounge.com/index.php/news/pb/14729

Harry

Taken with a grain of salt because of the source. But I have heard of some TY patients reporting this.

Why are you having so much trouble being tested?

Sally, it seems to add up to bad luck, a bad Biogen Rep and a Clinical Liaison who doesn't return phone calls. When I called Biogen the other day and spoke to a case manager, Tara, she told me that my file had been flagged to be expedited as soon as possible. She also said that my neuro's office had been calling on a regular basis. Everything had been documented in my file....but, for some reason nothing was progressing.

She left an urgent e-mail and voice message for the Clinical Liaison, Erin, who is the only one who knows who has received the lab kits and when they were sent out. Tara called me back later that day. She finally reached the Clinical Liaison....who had neglected to call my neuro....and found out what was holding up the entire process. My neuro had completed the Web Ex Training as soon as she originally filled out the packet of forms and sent them back to Biogen. Unfortunately, the packet didn't contain the confidentiality clause and the Biogen Rep and the Clinical Liaison never informed my neuro that it was missing. When I called Biogen 6 weeks ago they sent out a Supervisor who had my neuro sign the confidentiality clause and fax it to Biogen. The Biogen Rep was still not returning my neuro's calls and Biogen has done nothing about it

Apparently the Web Ex Training must be done after ALL of the forms are signed. My neuro did the training before signing the confidentiality clause and no one bothered to tell her that although it is on record that she did the training it doesn't count and she needs to do the Web Ex Training again before the Clinical Liaison will send out the lab kits. I called my neuro and informed her that she need to redo the Web Ex Training.

Now we need to wait and see. I don't know if the Clinical Liaison is too busy or just doesn't want to be bothered but she has never informed anyone...including my neuro...why the lab kits have not be sent out. We...my neuro and I ....have no way of knowing when the Clinical Liaison will go through my neuro's info again. I've been told it may take a month. Once that is done it is up to the Clinical Liaison to send out the lab kits for the blood draw. My neuro has several patients on Ty and her office has called Biogen repeatedly not only for me...because I'm constantly bugging them...but, also for her other patients.

Sally, I have no idea how long this will take now that everything has finally been done in the order Biogen expects it to be done. Biogen and the people working for it has repeatedly dropped the ball. There is a limit to what my neuro and I can do It's very frustrating for my neuro and for me because most of our questions and phone calls to Biogen go unanswered. We were fortunate this time because the case manager, Tara, stayed on top of everything and did not give up until she had spoken to the Clinical Liaison and had an answer for me. When I called Biogen 6 weeks ago everyone I spoke to....the case manager, the supervisor and the team leader....told me they would call me back to check on whether or not there had been any progress. No one ever called. If Tara, the case manager I spoke to the other day, had not kept her promise to find out what was delaying the process we would still be in the dark.

As I've said before.....I love Ty but I hate Biogen

My 38th infusion was yesterday. I've had the "normal" side effects that I have with each infusion. I had a new infusion nurse. She's young but good!!!!!!!!!!!!!!! They've trained her well and she had no difficulty hitting the vein on the first try She asked me if I needed to have blood drawn and did the medical assistant give me any vials. That is a major improvement because I normally need to beg for a blood draw. I had one last month so it wasn't necessary this month.

I'll keep you posted on my long and drawn out saga with Biogen. Perhaps things will begin to improve now that everything has been done the way Biogen wants it done.

I hope everyone is having a wonderful weekend. Thank you for listening to me vent!!!!!!!!!!!!

hugs,
Shayna