27 is down - When I went in I told the nurse I wanted the drug River posted in prior. I had it written down. I was told no. "I don't think we stock that and if we do it takes an hour to work." I got lucky, this nurse was more experienced and found a good one. Minor pain and got all blood for tests. She said she hit a gusher and not to look - so she cleaned my arm and all went great. I can't look or I get sick. I'm dead tired so not going into the drive, but I'll have to tell you about it later. Drenched clothes, clocked by cops, drive home took 4 plus hours.....Fun not.
The only important part - every 2 mos I am not just tested for liver. Per the nurse - I am tested on function of every major organ in my body, Her list was extensive and I can't remember. I did not know that could be done and I sure didn't know it was being done to me. Yes, this is good, but now I am more scared then ever that I will not pass. I guess I have to do it - one thing is for sure - the facility I go to intends to stop any possible PML there fast. I don't know about the JC virus now. I'm sorry but I did not ask. Too be honest, I have seen too many freak out over this and I can't deal with it. I don't want to know. Just me - not you:hug:

Pink, I'm sorry you had another bad experience!!!!!!!!!!!!!!!!!!!!!!!!!!!

I wish the facility I go to for my infusions would test my blood for everything....LOL I have to beg them to test it at all. If they don't do it every couple of months I have my PCP do it to test my liver. I don't know what else to ask for or I would ask he test for more than that.

My neuro said it would be at least another month before all of the paper work is done and her patients on Ty can be tested :( It's been 3 months already and I'm getting impatient. I want the darn test!!!!!!!!!!!!! I know it takes 4-6 weeks to receive the results. It will probably be some time this fall before they actually do the testing. Every few weeks they were telling me it will be soon but, I think they're sick and tired of my calling the office so this time they said at least another month:(

In 18 months I'll be eligible for Medicare. I'm waiting to see which will come first.....Medicare or that darn blood test from my neuro for PML and my test results!!!!!!!! I hope Medicare covers Ty :) I'm keeping my fingers crossed that we all test negative!!!!!!!!!!!!!!!!!!!!!!!!!!!

My daughter, sil and 3 of the 5 grandchildren are arriving today. They're going to celebrate my older granddaughter's b'day here as well as the 4th of July :) I can't wait for them to arrive. We go back to California every 6 weeks or so to spend time with them but it's such a long drive that I'm thrilled they're doing it this time.....even if they only stay for a few days. We normally stay there 7-10 days.

hugs,
Shayna

Price of Tysabri increases by 19%!!
 

WOW. The price of Tysabri has increased by 19%. That's unbelievable. I have a few suppositions. It went up because 1) fewer people are signing up given the PML risk and once that antibody assay comes on the market the roughly 50% of people who test positive won't be candidates for the drug 2) Gilenia (fingolimod) will be arriving in Sept. most likely and as a pill with no PML risk it may prove to be more appealing than Tysabri.

I would like to say I am shocked, but I guess I'm not. I find this just totally disgusting. Money, money, money. You can't tell me the cost to produce this drug went up that much?

http://www.automatedtrader.net/real-...abri-raised-19

Just cking in to see how all are - working with my meds for sleep here.

More information:

Biogen passed an 18% price increase for Tysabri in the US, effective June 30, 2010. Biogen said it's based on the improved efficacy of Tysabri relative to ABCRs, which have also had recent price increases. Biogen notes that if the JCV assay is successful there could be another one-time price increase in the future. Reimbursement is not expected to be an issue.

The new cost for Tysabri 300 MG/15mL is $3,076.03. The most recent previous price increases were Dec 17, 2009 (for 8%), Jun 30, 2009 (for 1%), Dec 23, 2008 (for 3%), and Jun 30, 2008 (for 3%). I believe the cost is for wholesale price. :eek:

Tysabri goes through a central distributor, who sells to the supplier (who adds their cut) who then sells it to your infusion center (who adds their cut) who then sells it to you/your insurance company. :confused:

I just got a copy of my last bill and the infusion center charges over 3X the wholesale cost, of which my insurance company pays a negotiated fee of more than 2X the wholesale cost. That's for the drug alone, not the infusion costs. :cool:

Guess what? I don't care. It works and my insurance pays for it. My premium did go up 15% July 1st, but so did the crappy plans we have available through my employer, so I don't feel singled out in this plan. Watch what happens after the study that they are doing head to head with the ABCRs. Betcha it goes up again.

Just checking in with my Tysabri twin and the rest of you here. Hoping you're all doing fabulous and enjoying your summer... :grouphug:

Btw, Copaxone went up a lot too, my insurance has to pay over $8,000 for a three month supply. :eek:

RW, hope you're getting some boating time in. My youngest would live on a boat if it were an option. :D

Can I say "ForChrissakeshowdidIevermissthis???" on here?

http://www.sciencedaily.com/releases...1202072009.htm

This is a validation study on JC virus.

I was under the impression that it was NOT known how JC was transmitted, caught, etc.

This 2002 study says different. It also says more than I ever wanted to think about. This guy who wrote this is no fly by night medico. He's got stats as long as my arms and they are LONG!

I hope you can all picture me shaking my head and wishing I had time to follow up on later developments but I just DON'T have time right now.
Perhaps someone could see what they can find out?

I'll be away for a week or so, time for a well deserved vacation. I'm having #41 tomorrow so I get it before I leave and don't mess up the schedule for th next 5 months!

I'm getting infusion #22 right now. Almost done...just waiting the hour. Overall it was pretty mellow although I'm already feeling crappy so I know this is going to be a rough post-infusion one. Blah!

I'm a little irritated though. 2 other women were with me getting infusions. I got up to pee and of course took the IV pole with me. When I came back the nurse said, "well we decided that you are not sick enough to be here. You just move too fast." That really bummed me out--what about all of those MS patients who have invisible symptoms? Everyone's MS is their own MS. Ergh. I just said "well I have other issues I deal with "

Natalie, I'm glad the infusion itself went well. I know what you mean about feeling crappy after an infusion. If possible sleep as much as you can after the infusion. That's how I try to get through the post infusion headache, aches and pain all over, the abdominal pain and nausea.

Is there any chance to nurse was joking??????????????? Otherwise, that was a very rude comment and she needs to be reported and given some sensitivity lessons. How dare she say that. A nurse dealing with MSers should know better.

hugs,
Shayna

Natalie8, I've seen u're posts often enough to know to trust, your word and am so very sorry this happened to you. I am one who has invisible symptoms thank God.
I would not recommend fighting their system - let it go. One rude nurse is nothing compaired what could happen. You don't need the stress or drama.
Just take care of yourself and let it be. All My Lov Pink

I strongly suggest all go to the last post Riverwild. River is out of town, but please review the post.

Thanks Pink :) I would've missed it!
Linda

I thought there was interesting/useful information in this article.

"Lessons Learned from Post-Marketing Experience with PML-Associated Natalizumab" Neurology Today: 20 May 2010 - Volume 10 - Issue 10 - p 17–18

http://journals.lww.com/neurotodayon...rience.13.aspx

I had my 11th Tysabri infusion yesterday. Everything went well. Getting out in the heat has made my arms weaker, and I'm hoping the T will get me back to weak-normal.

I had a neuro appt. last week. He mentioned that protocol is to take Tysabri for two years, then take a 6-month break from it. Is that correct?

Also, I had an MRI two weeks ago. Results were that nothing has changed. So, that's good. My veins are becoming hard to put an IV in. The woman who put my IV in before the MRI was a little too rough, and I should have said something but I kept my mouth shut. It felt like she was digging around with an ice pick.

With my tremors, the technician puts pads between my ears and the plastic helmet to hold my head perfectly still since I can't do it myself. Before she put the pads in, I requested earplugs. She tried to tell me that the pads would be enough, but I insisted. She acted like I had asked her to scrub my kitchen floor! The B----. This is the same person who used an ice pick on my poor vein.

The other technician who got me out of the MRI and helped me back to the changing room was a whole lot nicer. He acted like they all should act, instead of getting all hot and bothered because I made a very small request. Oh well, hopefully that will be the last MRI now for two more years.

azoyizes, congrats on #11!!!

"I had a neuro appt. last week. He mentioned that protocol is to take Tysabri for two years, then take a 6-month break from it. Is that correct?" No - Check the tysabri site - I do not see this as protocol! The is your neuros opinion. I'm going on 28 now and many here with over 40 and no break.

I hope soooo tysabri can get you back also. I was dxed late and have had a hard time due to other problems, but I have regained most. typing is crap and fatigue now is my worse. I have found tysabri works in bringing back some, but in it's own time.

Good Luck

Hi azoyizes, I think I just had #47 Fri. I have not had a break nor do I want one at this point in time. I quit a neuro who decided "his" protocol was to stop Ty at 2 years and this was this past May. I do not believe there is any set protocol.

My veins are not easy to get but my many different nurses do a good job and when one has a hard time she is apologetic. Your nurse sounds like a witch! If it were me I would speak up about her.

Hope you upcoming infusions go much easier and that Ty works well for you :)
Linda

Hi Maryann, Congrats on the no change MRI!! I think that everyone's doctor has a different "protocol" ...probably dependent on the doctor's level of aversion to risk. And then it depends, of course, on the nature of someone's MS, how long they have had MS, what their MRI looks like as well. I get the sense that there are still a lot of unknowns with this drug so doctors make their own call. I have decided that I will be going off it soon. I've had 22 infusions now. I LOVE Tysabri but since my MS is mild the doctor thinks the risk is probably not worth it at this moment. I do have to agree. I went on Tysabri because I couldn't tolerate interferons or copaxone and there were no PML cases at that point. Now there are a lot. However, if I test negative for the antibodies (once my clinic gets that set up--hopefully soon) I will definitely stay on the drug. :hug: Natalie

New info in the Tysabri label
 

according to Biogen: “Accumulating experience indicates that the risk of PML increases with longer treatment duration. In addition, patients treated with an immunosuppressant (IS) prior to receiving TYSABRI have an increased risk of PML; IS use includes agents such as mitoxantrone, azathioprine, methotrexate,cyclophosphamide, mycophenolate and cladribine. This increased risk appears to be independent of TYSABRI treatment duration and is based on the fact that 46% of TYSABRI patients with PML had been treated with an IS prior to receiving TYSABRI. From the TYGRIS Observational Study, it is estimated that 20% of TYSABRI-treated patients (13% in US and 24% in EU) have been treated with an IS prior to receiving TYSABRI. Hence, there appears to be a disproportionate representation of prior IS use in the patients with PML compared to the TYSABRI-treated population overall,
The data indicate that patients with prior IS use have ~4-fold greater risk of PML compared with patients without prior IS use.
Patients with prior IS use have ~2-3 fold greater risk of PML compared with the overall TYSABRI-treated population, and patients without prior IS use have ~50% lower risk of PML compared with the overall TYSABRI-treated population. The US TYSABRI prescribing information now reflects these observations. Nevertheless, the overall worldwide incidence of PML associated with TYSABRI therapy since reintroduction remains generally consistent with the rate previously observed in clinical trials (1). Databeyond 3 years are limited.”

I'm baaaaack!

Had a wonderful time at a week long music festival, hotter than...yanno.
I walked everywhere in 85+ degree heat/humidity. Kept cool with an umbrella, a mister/fan bottle, froze three cases of water bottles for the cooler to keep food cold and drank them ALL as they thawed, wet down when I could and just had a great time!

Spasticity kicked in on the drive home. I have a tiny car and we had all the gear ofr a week packed into it along with two 6 foot plus people, so there was NO stretching room. My leg started spazzing during stop and go traffic on a turnpike. That was no fun but we did a LOT of stretching stops and I made it through it!

Baclofen and Provigil were definitely my friends, but I made it through it all and had fun!

I had #41 prior to leaving, no problems, no concerns. I had the blood draw for the JCV study. Now we wait for results. I'm chanting negativenegativenegative for luck!

Hope everyone's doing well. I'll catch up when I unpack and slow down!

Hey RW, so happy for you :D trip sounds wonderful (other than the temps) and that you had such a good time !!!
Congrats on #41! I think I had #47 on 7/16-now that I'm going every 5 weeks I am not able to keep track like before:p
Linda

Interesting article from July 20, 2010 about new treatment option for PML.

"Specialists explore options for treating natalizumab-associated PML"

http://www.mstrust.org.uk/news/article.jsp?id=3941

Joy another infusion today! I have to admit that I am a bit jealous of those of you who actually get results and mobility improvement. Ok, I am a lot a bit jealous. And frustrated.

I don't want to play guinea pig anymore! And it would be so nice to not see my veins explode today.

Hoping for a MUCH better experience for you!!!
Linda

No such luck! On the plus side, they only blew one vein and I got to spend the day with my best friend, and DH2B went to store and decided to surprise me by picking up most of the stuff DD needs for school, and a new external hard drive for me! That was pretty sweet.

But, on the not so plus side... best friend went with me today because she had an appt with my neuro about a brain stem injury from years ago. While I was there I moved my follow up to next month, and talked to neuro. The newest set of tortures my body is creating seem to scream "new lesions!!". I had planned on doing one more infusion next month and then looking at MRI to make the decision whether to stay on the Ty or to get off of it and try to fix the broken back.

Now she wants a new set of scans BEFORE my next infusion, and if I am presenting with new lesions as she suspected she is pulling me off of Ty all together. Can't say it is a crying shame as I have yet to see any improvement, but I can say I am tired of trying every drug they have available and I am not too sure that I want to go play lab rat at clinical trials, so I dunno.

I had another infusion last Friday.....it may have been #35 but I'm having difficulty keeping track and my calender isn't on my desk so I'm not sure. Between the infusion and the antibiotics for the sinus/ear infections I keep getting my stomach feels like it's being torn to pieces :( But, I've had sinus infections most of my life. They seem to pop up at regular intervals. The infusion dr seems to be upset by them and keeps asking if I'm sure my neuro is ok with the antibiotics and the infusions. Actually, my neuro is thrilled that the infections no longer last 8-9 months. Having an infection every other month or so and only taking antibiotics for 2-4 weeks....sometimes 6 weeks....is a major improvement!!!!!!!

Leggz, I'm sorry you're having such a hard time!!!!!!!!!!!

RW, your vacation sounds wonderful :)

I heard on the news that some MSers are responding well to meds for high blood pressure. That is great!!!!!!!!!! I can't take them because if my blood pressure falls any lower they won't be able to find a pulse...LOL But, the neuros are speculating that in a few years there will be m.s. cocktails that will help improve quality of life and give MSers a normal life span. They have developed cocktails for AIDs and childhood leukemia both of which were once considered fatal. I have a nephew who has AIDs. He was dx HIV + at age 19. At the age of 20 he was dx with AIDs. He is now 41 years old and living a normal life :) I hope to hang in there long enough for the m.s. cocktail!!!!!!!!!!!

My neuro is waiting for the go ahead to begin testing for JCV. She also plans to get an infusion nurse to join her practice and will eventually begin administrating the infusions in her office :) I'm looking forward to that...as long as the infusion nurse can hit a vein without blowing it. Her office is only 10 minutes from my home. The infusion center I go to now is 1 hour away from home...but, the nurse is fantastic!!!!!!!

Take care everyone and have a great weekend.

hugs,
Shayna

more information on JC virus assay and risk for PML
 

http://seekingalpha.com/article/2154...all-transcript

Biogen Idec Inc. Q2 2010 Earnings Call Transcript, July 20, 2010

I’ll be providing an update on the pipeline a bit later, but let me begin with our TYSABRI risk stratification efforts. As I’ve mentioned before, one of our goals has been to provide prescribers with tools they can identify individuals who might be at risk for PML when taking TYSABRI.

We began with a premise that only patients who’ve been affected with the JC virus are at risk of developing PML. Our hypothesis that our two-step ELISA assay that detects antibodies against JCV will be informative in estimating the risk of developing PML for patients receiving TYSABRI.

Based on testing, nearly 2000 MS patients from STRATA and TYGRIS studies, we find that approximately 50% of MS patients are still positive with our assay. We currently estimate that our assay has a false negative rate of about 2.5%. When we tested archived samples that were available from 17 patients who developed PML while on TYSABRI, all 17 tested positive with our assay.

These samples have been collected 16 months to a 180 months prior to the onset of PML for various reasons, including participation in clinical studies and national registries. With antibody status, we’re not a risk factor for developing PML, one would have expected that roughly half of these 17 patients would have been antibody positive. So we believe the finding all 17 to be positive was extremely unlikely to be due to chance.

Encouraged by these preliminary data, we have initiated two studies to test our hypothesis at the anti-JCV test that we have developed will be helpful to clinicians as risk stratification tools. These studies are STRATIFY 1 and STRATIFY 2, both of which are being conducted in the United States.

As George mentioned, STRATIFY 1 is now fully enrolled and STRATIFY 2 is off to a great start with more than 700 patients enrolled at over 90 sites around the United States. This study which will enroll a total of 8000 to 24000 patients will provide an estimate of the risk of PML in TYSABRI patients test negative in our assay. Our hypothesis is that those who test negative in our assay will have a lower risk of PML than those who test positive.

We plan to show preliminary data from STRATIFY 1 at the ECTRIMS meeting in October of this year. Also, our manuscript on the anti-JCV assay methodology and its potential use as a risk stratification tool has been accepted for publication in the Annals of Neurology and will be coming out in approximately six weeks.

We also want to update you on a change to the US TYSABRI label that we along with our partner Elan have just made. After a thorough evaluation of our post-marketing surveillance data, we have concluded that the risk of PML is increased in patients have been treated with an immunosuppressant prior to receiving TYSABRI.

This increased risk appears to be independent of treatment duration and there was a broad range in the time interval between the discontinuation of the prior immunosuppressant and the TYSABRI initiation. Recall that the original label had warned that patients receiving TYSABRI should not be treated with concomitant immunosuppressants. We have added an additional warning about the prior use of these drugs to the existing warning.

Based on data from the TYGRIS observational study, only 13% of US patients and 24% of ex-US patients have had prior immunosuppressant use, whereas about half of the PML cases had previously received these drugs. Thus, there was a disproportionately higher representation of prior immunosuppressant use in the PML cases. The new label changes were posted online as of July 15th. Overall, we continue to learn more about factors associated with the risk of PML and we’re looking forward to providing data to the MS community to help with their decision-making for treatment choices.

Hi Maryann--I hope you are feeling better soon. Glad to hear the celexa is helping you. Depression can be such an awful crippling thing. :hug: Natalie

#10 for me today. The reason why i'm saying so is because one time I read someone ask if anyone else felt like they needed a "tysabri fix" in the final days before next infusion. Well I sure as heck have-had? increased numbness the past few days. The CT I had yesterday (or lack of eating for 17hrs) didn't help things either. Ty never gave me a stomach ache like others have. None. I drink water & do bicep curls so veins are super easy to hit 1st time.

I just wanted to give a quick update and share some news I found out. I saw my "new" neurologist today -- this is only the second time I've seen him. He was previously at Johns Hopkins. I learned more from him today then any of the other 4 neurologists I have spoken to since I got MS.

First, my MRI showed no changes--no new lesions, no enhanced lesions. Yeah!! :) I just love Tysabri! I've had 22 Tysabri infusions. I'm on every other month since last Dec. I will get 2 more infusions in Sept. and Nov. and then meet in Dec. to reassess whether or not to stay on Tysabri or go on fingolimod. If I go on fingolimod I would stay off Tysabri for 3 months but have one dose of 1,000 mg. of steroids at the end of the second month to potentially stave off any kind of rebound effect until I can start fingolimod at the end of the third month. Interesting, huh?

Second, one of the patients on Tysabri at my clinic got PML a few months ago, although he had the infusion at an infusion clinic outside the city. Very sad. :( My neuro said that doctors are working on new treatments/drugs for PML aside from plasma exchange, the malaria drug, and steroids for IRIS. A new article came out last week about a PML patient who also received Remeron (antidepressant) but my neuro wasn't very convinced with its success. Anyhow, the neuros at my clinic got this patient into the hospital very quickly (even though he didn't have health insurance) and they gave him plasma exchange, steroids later on to protect from IRIS and used experimental drugs which they had flown in from ?? (I can't remember where). The drugs were flown in and the IRB (institutional review board) approved this all in 72 hours so the patient could take this drug immediately. The patient is now at home and has residual disability--weakness on one side of the body but doing fairly well. He started out with weakness and that is why he called the doctor. My neuro said the goal obviously is to catch PML as early as possible and that once you start treatment for PML, whatever disability you are manifesting is usually the worst you would be left with if you survive (75% survival rate); but the goal is to use the drugs, plasma exchange, and steroids to get you back as close to where you were before. The 3 things he said to look for with PML are 1) weakness on one side of the body 2) cognitive changes 3) vision loss. These get progressively worse over the course of 2-4 weeks.

Third, I learned interesting things about Fingolimod. They are not going to keep the name Gilenia. A new one has not been chosen. He spoke to Novartis and I think he said it will be approved Sept. 21 (if FDA says yes, but likely will). It probably won't become available to dispense in pharmacies until Oct. or Nov. Apparently there is an issue going on with the insurance companies and whether they will reimburse because it is new (and may be considered second line treatment). Or it may be reimbursed since it is "technically" the first pill. He spoke fairly positively about the drug. Of course he said we don't know what the long term implications are of imuno-suppression but the general side effect profile looks minimal for day to day feelings (no nausea, dizziness, fatigue...that kind of stuff). It slows your heart beat only on the first dose so he will keep his patients in the office for the first 6 hours to observe. Initially they were worried about lung capacity diminishing but he said that didn't really show up in any statistically meaningful way. There have been 6 cases of macular edema, 5 have resolved after going off the drug. He will have his patients checked by an opthamologist regularly. He will also recommend skin checks regularly since a few people got basal cell skin cancer.

Generally speaking, he won't recommend fingolimod as first line drug until after 2 years of seeing what will show up. But, he is not adverse to prescribing it and if he had to choose between Tysabri and fingolimod as a second-line, as much as he loves Tysabri's success he feels the safety record is slightly better with the unknown fingolimod v. the possible PML with Tysabri. But again, he seemed open to letting the patient make this choice.

What a day. I'm glad it's over.

Hi EddieF, yes needing a ty fix is very common. I have heard many talk about it. I had it all my 1st year on ty and am not sure when it stopped for me, but it did sometime in my 2nd year. I use to count the days till my next "fix". I recall it well and yes I had a minor increase in sx like tingles... I think you are fine. Please let us know how your next fix goes. Sorry I'm late!:hug:

I'm considering again going off ty due to problems with my lungs. I'm always sick and quality of life is low b/c of illness. My GP has run out of of drugs to give me. I've been on Rocephin (sp) shots for over a year and usless antibiotics. We have tried them all till they stopped working. I do not know what to do.

My neuro states my MS is folowing my ilness. They are correct. On the few days where I'm not as ill as ususual - MS is much better. When illness is worse - MS is out of control. I wish so I was like the rest of you. I sould be fine and have a happy nornal life with ty, but I smoked. My mistake - my price to pay.

I am told the MS shot drugs are not aggressive enough and will make me sick. Will they hit my lungs as hard? Or do u think LDN... I'm at a loss here.

I was dxed 2-16 while in attact. 2 attacks since. I just came out of the last one.

Please forget I'm 49 and consider me (due to lungs) 60 plus. What would you do? I doubt few if any will respond - so best wishes to all.

Love and respect always

Pink, I'm so sorry that you've been ill and it's making you sx worse!!!!!!! I have a problem with chronic sinus and ear infections. But, fortunately, they have been responding to antibiotics. I can tell when an infection is at the "I need antibiotics now" stage because my m.s. sx get much worse. Until I hit that stage I drink lots of hot fluids, use a nasal irrigator and sit in a steamy room. I wish the antibiotics had helped you as much as they have helped me.

Does your neuro think the oral meds coming out this fall may help you?????? It's the only thing I can think of. I have heard that the oral med may cause problems with one's heart and liver. But, other reports speak very highly of it. I think your neuro is the only one who can give you a medical opinion on the orals.

hugs,
Shayna

Hi Shayna, I've got puter problems and couldn't hold a connection sooner - on kids now.

Thank you very much for your post. I'm sorry to hear you have infection problems too, but very happy the antibiotics are working. I didn't know anyone had a problem like this b4 your post.

I have not talked to my neuro or nurse about Fingolimod since Dec. Then, he said to put one one this drug was like taking them off a proven drug (with sides pretty much know) to go with one he feels is unproven... I do know if he has changed his mind. I asked to be put on ty every 2mos (so I could get my health up), but was told no. I'm sick now but supposed to go in for ty on Tues and will get & post more info when I have it.

I have read Fingolimod has sides such as lung infection, macular edema, and an increase in skin caner especially for those who have been on ty. Those are my major concerns so far along with the risk of a flairs from coming off TY.

I'm going to try for ccsvi, but hold out little hope there due to my location and cost. Time will tell, but I now am ready to risk it, if I can get it. I know I'll have to be on some drug even if I can get it.

I think Natalie8 has found a great neuro. I really think she is getting great advise from hers,and her posts are extremely informative. I would encourage all to follow them. Thanks again Shayna :hug:

:Wave-Hello:
I'm ba-a-a-a-ck!
Had an ever so long and lovely vacation. Spent most of it on an island with many screaming children and their sometimes screaming parents. Saw most of my nieces and nephews and grand nieces and nephews and godsons and a younger brother who I resisted fighting with (even though he was an ***!)

I am stiff and sore from too much activity. I swam and climbed and ate and drank too much. It wasn't easy moving 30+ people back and forth with all their assorted gear!

We installed a new sink, finally gave up on the 100 year old cast iron antique that no longer can be repaired. I found a giant used 2 bowl stainless steel sink for $20.00 and it was fitted and installed in a day! Who knew that a stupid sink could make so many young dishwashers so happy! :p

I came out of hiding long enough to have my 42nd infusion on 08/12. As usual, no problems, no concerns! Still waiting for my results from the JCV test. Sadly, the 50%+= rate is not proving out at my neuro's office. Everyone who has been tested through his office so far has come back positive for JC exposure. I've got my fingers crossed that I will be his first negative!

I did my annual walk, talk, mini mental, etc. and he is still insisting that I at least TRY Ampyra (4-ap) He thinks I may benefit from it since I continue to have spasticity and stiffness (it was very visible when he saw me because I was on vacation and having too much fun!) so I am signed on. He says we will know in two weeks whether it is working for me. I haven't started yet. I wanted to wait until I was done with vacation and for some reason they have to investigate my insurance benefits? I'm going to try it for one month. I hate adding more meds to the regimen but if it works, better living through chemistry!

Hope everyone's doing well! It's back to work for me and I didn't want to get out of my car and go inside the first night back! :Sigh:

48th infusion last Fri
 

When I get my infusion in Sept I will have completed 4 years on Tysabri:D

RW, your vacation sounds delightful, the part you were physically capable of doing sooo much - the yelling kids (parents) not so much :p
I am really happy for you :)
Linda

I had infusion #36...I think.....on Friday,August 20. It was stressful because although I had the card with my appointment listed on it at the infusion center they had me listed for September 3 :( After a lot of begging and pleading they finally gave me the infusion. They had a bag of Ty for a patient the following week and gave it to me instead. They said they had plenty of time to order Ty for that other patient. I left for Califoria after my infusion so that I could be here for my grandson's first day of kindergarten. I'll go back home on August 30.

My neuro still has not received the viles for the stratisfy 2 test for PML. They don't know when they will receive the viles but will call me as soon as they do. I'm really fed up with this!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I've been fending off another sinus/ear infection for the past two weeks. So far I've been lucky and have not needed the antibiotics but, it's just a matter of time before I need to begin them again. My neuro has no diea why Biogen has not sent out the viles for the blood draws.

RW, I'm glad you had fun. Grammie, I'm thrilled that you're doing so well. Pink, I wish I knew what to tell you. I've been getting so much different information about the oral med I don't know what to believe. I don't see my neuro again until October. I'm going to ask her then what she thinks about it.

If I don't make it into thje stratisfy 2 program before it closes I may say the heck with it and go off the Ty. I I don't like feeling like I'm playing Russian Roulette. Ty has been good for me but I don't like knowing there is a blood test to see which patients are more susceptible to PML and I may not be able to get it because Biogen is dragging their feet. From what I have read those patients who are diagnosed with PML quickly have a much better chance of surviving with little disability. But, that doesn't change the way I feel about the blood test. If I don't receive it I don't think I will remain on Ty. This is simply too streesful :(

I'm sorry but I'm just feeling extremely stressed over everything that concerns m.s. and the only thing keeping me sane is the time I'm spending with my grandchildren.

hugs to all :hug:,
Shayna

One minute of my life today
 

Ready?

My phone rang this morning at 8:00 a.m.
I am usually asleep or on my way to bed at that time but today I was right next to the phone so I grabbed it.

It was my doc. He said "I NEVER call patients to give them test results, but I just had to call you and share this. You are my first patient who was tested for the JC virus who had negative results"

I was speechless and he started laughing. He says it's the first time I ever had nothing to say.

I let out a whoop that all the summer people in my neighborhood must have heard and did some of this:

:holysheep: :thud::yahoo::Dancing-Chilli::Thanx: :Head-Spin::Bow::smileypray:

He said he remembered that I told him I would be his first negative patient when he did the draw for the test. I am the only one who has come back negative so far and he was getting discouraged by all the positive results that he had to tell people about.

He cautioned that I have to remain vigilant and that we don't know what the test means yet and that there is a 2.5% false negative rate, we don't know how the virus is transmitted, etc, etc, etc. and that the next test will tell us more, but that as far as he is concerned, there will be no drug holiday if I don't want one!!!!

I told him that was a good thing becaue I was having a hard time with the fact that I had agreed to let him be the doctor if I was positive. :D

I just had to share! Now I am going to bed cause I have a date with the Yabbit this afternoon. She has an appointment with my doc and we are going to meet and eat afterwards-- our favorite activity!

I wish you all a solid, heartstopping moment of overwhelming joy today, like I had this morning! :grouphug:

Yabba dabba do, so glad for you!!!!!!