CCSVI TREATMENT = Unclog your veins -- for those with MS it's the best option

My Search Goes On

2011-12-24T12:31:00.000-08:00

I was NOT helped by Dr. Stone at Phoenix Mayo. (for more on why I went to Dr, Stone, see msmikejuices@blogspot.com) Dr. Stone did CTs of my head, neck and chest. Dr. Stone said the Blockage in my left Internal Jugular Vein goes up into my brain/cranium. So he said there is Nothing he can do to give me Increased Blood Flow. I tried to get a Consult from a Brain Surgeon and Mayo said NO, they are Done with me.
I have made copies of my CTs and sent them to Dr. Hewett of Pacific Interventionalists, aka Synergy. He called and discussed some things with me, but no immediate help. Dr. Hewett made an observation on one of my CT images, which I have sent via Facebook to Dr. Sal Sclafani in Brooklyn and he is waiting to get the full set of CT images.

Mayo doc does good things for MS patient

2011-10-08T11:21:00.000-07:00

Dr. William Stone of AZ Mayo Clinic has done a NEW vein by-pass surgery for an MS patient who did NOT have success with Angioplasty for his CCSVI. MIRACLES NEVER CEASE-! This is what I was going to fly to Italy for...now it so close to home. As my abilities get Worse and Worse, Day by Day, I am anxious to Stop the Progression of this disease, by fixing my veins, Unblocking the Blood Flow, ASAP. I have already experienced my Standing and Walking Improved, as well as hand tremors Faded, so I was able to write and use my hands as a Normal person. I WANT THAT ASAP -- BEFORE I DIE--!!!

Trying a New Path

2011-09-29T17:07:00.000-07:00

Since I am at the end of the Road with my CCSVI (Chronic Cerebro-Spinal Venous Insufficiency) journey, I am starting a new path. As I said before, the docs (Interventional Radiologists)cannot complete my treatment for CCSVI, as my left IJV (Internal Jugular Vein)is occluded/blocked beyond the ability of the doctors to Correct right now. I have had my right IJV opened and my chest/azygos vein opened and I am enjoying benefits from that. I have been OFF MS drugs since Dec. 2010, my MRI shows No New Lesions and my blood-brain barrier is not being Invaded. I have heard of other MSers that are in this same predicament of Incomplete CCSVI treatment as the Knowledge of what to do is Not Here yet. I couple of MSers in Italy have been helped by a brave vascular surgeon, Doctor Salvatore Spagnolo. This doctor creates an alternate pathway for blood, using a vein from the patient's leg. You can search on the Internet for details. One patient was able to get up out of his wheelchair and walk on his own. Another lady is walking again and she can play the piano, 2 abilities she had lost. I have found an Italian lady surgeon in Scottsdale that knows Dr. Zamboni, does CCSVI treatments, and is intereed in my case. There are many steps that must be taken on this path, so I will be giving you updates as they happen.

Taking a Break

2011-07-23T11:03:00.000-07:00

Hi folks, the summer is HOT, so I'm going to take a Break from everything for 2 reasons - ONE is the Unusually HOT and Muggy/Humid summer. TWO is that I have gone as far as I can go with treatments for my CCSVU condition at this time. I have been e-mailing to Dr. Siskin in Albany, a CCSVI expert and S.I.R.(Society for Interventional Radiology)spokesperson. Also e-mailing to Dr. Ponec of Oceanside, associated with Hubbard Foundation, who gives CCSVI treatments at the Del Mar Vein Clinic. Both met at the recent CCSVI Symposium in N.Y. and actually discussed my case - I am honored at that. Both doctors concluded that nothing more can be done for me at this time. I beg to differ, as there is the option of ballooning my collaterals, like the 1st time. I will try to rest and recover, as my body is showing me that it is stressed out. But I will Never Give Up-!

CCSVI Be GONE!

2011-04-28T23:00:00.000-07:00

My MS body is getting the Best of me--why do we have so many problems? I can't do the simplest things anymore. I struggle to keep walking...I'm waiting for my next treatment to correct this CCSVI birth defect...ugh! Double ugh! It's embarassing what your body will STOP doing Without your permission...

2nd CCSVI treatment

2011-04-05T09:41:00.000-07:00

Well, my 2nd CCSVI treatment was with Dr. Arata at Pacific Interventionalists. Since I am on Medicare for my disability, I asked them to bill Medicare. Dr. Arata says in Calif. Medicare is managed by Blue Cross and they won't pay. I told them Medicare already paid almost half for my 1st CCSVI procedure which was done at DelMar Vein Clinic, thru Hubbard in San Diego, 6 months ago. Dr. Arata was surprised and said maybe it is because I am from Arizona. So in order to bill Medicare, I had to be admitted as an outpatient to Fountain Valley Hosp.,a few miles away. I'm sorry to say that Dr. Arata could Not reach my left IJV with the wire, so no work done there. But he worked on my right IJV and did something in my Azygos. I am still waiting to get Dr. Arata's report. Overall, my Brain Fog is gone, but I Do NOT have the physical improvements I had after the 1st CCSVI treatment. So I am disappointed, but looking forward to my next treatment. I think this is the Way to Go for me because of the multiple symptom improvements I experienced the 1st time.

CCSVI - I got an E-mail from Dr. Siskin

2011-02-15T20:49:00.000-08:00

I feel so IMPORTANT -! I got an e-mail from Dr. Gary Siskin in Albany, N.Y. --WOW--!! If you are reading this & don't know how important he is and all the work he is doing with CCSVI, then you need to Google him & find out. I feel so Blessed & Honored that he took the time from his busy schedule to look at my records from my 1st CCSVI treatment and give his opinion if I should do another treatment. And he said "it's worth a second look", esp. since I had NOTHING done to the azygos vein, due to my scoliosis. I am So Happy-! I don't care that I have to wait until November, because I'm already booked to do my next/second CCSVI in March in Costa Mesa with the Pacific IRs. So N.Y. would be a 3rd time, if necessary. I have to keep all the irons in the fire, as MS continues to Progress & I have 30 years of destruction to undo...

GET BETTER WITH CCSVI TREATMENT-!

2011-01-19T15:42:00.000-08:00

There is an Important Event in Seattle coming up, the last weekend in January. Doctors will consult with you ONE on ONE about your Status, so bring any tests you've had done with you & Good Luck!! For More Info. see Kathleen Lynch on FACEBOOK...

Happy Holidays

2010-12-28T14:34:00.000-08:00

Happy Holidays and CCSVI Treatment to ALL that Need it -- this will FREE YOU from Many of your MS symptoms. Do you realize you've had this CCSVI condition since your Birth? The Neurologists don't know about this except Dr. Hubbard of San Diego -- ask an Interventional Radiologist who specials in Veins...

CCSVI - Do Ya Wanna Know What it is?

2010-11-23T13:07:00.000-08:00

This is a lenghty, but informative interview with a neuro for ALL people with MS: http://www.komonews.com/home/video/106175483.html

CCSVI - Liberation and MORE

2010-11-23T12:42:00.000-08:00

Hi EVERYONE - ! Sorry I have Not Posted Here for 3 months -- WOW-!! The World has Changed for me since I went to San Diego to get my CCSVI treatment...I came back with a UTI because I have to travel long distances with a catheter. This may have impacted the results of my treatment. I had Good Things Happen but they slowly faded after several weeks. I now have minimal improvements come & go that I did NOT have before. I was told that this has happened to othewrs. Since I've had MS for so long, I'm looking forward to my next CCSVI treatment. Dr. Hubbard had an interview with the Seattle news. Two MS patients from Seattle came to San Diego for CCSVI testing, then treatment at the Del Mar clinic. Because of this, a Seattle newsman gave Dr. Hubbard a lengthy interview on what CCSVI is and how it shows that some of our MS symptoms can be Improved and/or "fixed" because the symptoms are VASCULAR. This is a Breakthru and I believe ALL people with MS should be TESTED for CCSVI. If tests show they have this condition, the treatment is a selection of existing procedures that are Already Being Used for Other People with Other Problems in their veins.

2010-08-18T12:30:00.000-07:00

Oh Boy--Oh Boy--Oh Boy-!!! I cannot Wait until I get treated for my clogged/blocked veins--MS symptoms will Improve like NONE of the Drugs ever could do--!! Thirty-three years of Suffering & NOW I have Real Hope-!! I know I won't be 100% free of MS, but ANY IMPOVEMENT will be So Welcomed--!!

More about My Testing for CCSVI

2010-08-07T13:46:00.000-07:00

Update: I had MRI & MRV testing for blocked/clogged veins on 8/5/10 at Hubbard in San Diego. I'll wait now a couple weeks for test results. Info. is all over the Internet, Facebook, YouTube, etc. from many countries. Wow-!

CCSVI More Good News

2010-07-05T17:08:00.000-07:00

I have been researching CCSVI, where to get tested & get the Liberation Procedure done. Since I live in Arizona, it looks like Clinics of the Heart with Dr. Rafael Moguel in Cabo San Lucas, Mexico will be best for me. Not sure of details yet (cost,etc.) but there was already a trial of 10 MSers & all had successive outcomes. ***Good Luck to All***

CCSVI

2010-07-02T08:41:00.000-07:00

Is this a CURE for MS-?? WOW-!! See the NY Times article. They will start testing in Atlanta on 7/15. Check around you to get Testedto see if you qualify tor this Cure. YAAYY--!!!!!!!

There is Gloom and Bloom in JUNE

2010-06-14T19:07:00.000-07:00

Hello out there -- how are things going with everybody? I'm still waiting to try AMPYRA to help my walking. I know it is expensive & it only helps 40% of people who try it, but hey, it's a PILL, how EASY is THAT? There goes Mother's Day, here comes Father's Day, Graduations galore, BBQs, etc. etc. WAIT!! "Hold onto your horses" and don't Overdo It -- take a break, drink fluids, stay cool, be Good to Yourself. Big Announcement = CUPCAKES for EVERYONE-!! I just received Tysabri Infusion #48 = 4 YEARS on a medicine that did NOT throw me into the Donut Hole because it's under Medicare Part B. Also, Tysabri is overpriced, but I notified "the powers that be" and if they Do Nothing, I wash my hands of the issue. I cannot "fight the good fight" any more = lack of energy. Tysabtri has NOT been costing me anything, except for monthly payments to Medicare & my supplemental insurance, which I would be paying anyway. You would think that I would get a questionnaire wanting to know if I feel better on Tysabri, if I'm CURED, but NO, nobody holding the Purse Strings Cares. Hmmm... Until Next Time.

No More SPAM

2010-04-19T09:54:00.000-07:00

Not sure what I DID, but No More SPAM--!! Coming up to 4 years on Tysabri--NO, I'm not scared of getting PML. Waiting to try AMPYRA to help my Walking--Bring It On--PLEASE!!

Earth Day

2010-04-19T09:29:00.000-07:00

Hi folks, I'm asking bloggers to take a break for EarthDay this year. Just Do One Thing, as they say, to promote a positive influence on Mother Earth. Getting "Outside Yourself" for awhile always helps me to put aside my problems and feel grateful for the Positve Things in my life. As an example, I cut apart the plastic "loops" that hold a six-pack of cans together, before throwing it in the trash. This prevents critters from getting caught in the "loops" when this trash is deposited in the landfill.

SPAM

2010-02-21T07:56:00.000-08:00

I'm starting to get SPAM in my comment section of my blog. Please excuse any GROSS or offending comments--I am trying to figure out how to stop it. I may have to close out my blog.

It's a New Year

2010-02-11T12:50:00.000-08:00

I'm still getting Tysabri every month at the local hospital. Just had infusion #44. I am recovering from back surgery so not sure which symptoms are from the surgery & which are MS. I'm doing P.T. twice a week and it's a Good thing to do. I use a scooter to get around in the house, but I can also walk SLOWLY with a walker short distances. I have been retired on disability for a few years now. I wish the best for everyone. Happy Valentine's Day.

Happy Holidays

2009-12-24T20:13:00.000-08:00

I am still recovering from back surgery. I was told it would take a year for the FUSION of L4, L5 & S1 to be completely healed. I only missed ONE Tysabri infusion. I did NOT have an MS flare-up after my surgery. Just a little clonus in my feet in the mornings & handwriting problems - finger tremors if I try to hold anything tightly. But I can play Carols on my piano with no problems! I'm practicing how to walk Up Straight, with a walker. I have to try Not to Twist or Bend. But I feel the surgery will eliminate weakness in my legs, that I thought was from MS. "...Merry Christmas to all and to all a Good Night-!"

Summer to Beat all Summers

2009-09-08T16:23:00.000-07:00

I would say this is the Best Summer for me in many years. I've been on Tysabri for 3 years & was getting nervous about it. Saw my Neuro, he tested me and said the Tysabri is working, so Yipee! Now I can get my back problem fixed with some fusion surgery in Oct. and I should be "good to go" as they say. Looking forward to being able stand straight up & walk (using a walker for balance, so what? I WIll BE ABLE TO WALK-!!) Remember, even tho you have a disease, all your problems are NOT from the disease.

Just had to say...

2009-06-25T16:51:00.000-07:00

Just had to say Goodbye to Michael Jackson here on my blog. I'm proud to say that he was my "Home Boy" because we both grew up in Gary, Indiana. Michael's Dad worked with my girlfriend's Dad in the Mill. My Dad was there also, but in another dept. Wish we all could go back to those days, "in the beginning"...

Into the Summer

2009-06-07T13:00:00.000-07:00

The First Sunday in JUNE and we're going into the Summer, whether we're ready or NOT! My life has been going up and down, good times & bad. I try to enjoy the good times & know that the bad will Not Last Long. Most NORMAL people (without disabilities) take their Normalcy for granted. I wish I could shout at them & make them realize how Good They Have it. Not having to think about yourself & just LIVE, is a miracle in itself. Now I will jump off my Soapbox. My life with Tysabri is not a miracle & Way Too Expensive (not for ME but for Taxpayers). But it is the Best I can get at this time, & Who Knows? I might be crawling around on the floor without it. So I will continue in my line of support for this medicine, even tho I believe I started taking it Too Late to correct many of my MS problems. Please find something Every Day to Enjoy & Be Grateful for-!

Tysabri Insurance

2009-04-14T16:10:00.000-07:00

If you're lucky like me, you get your Tysabri (or other medicine) paid for In Full-! I'm sorry, folks, I didn't do anything special to get to this point. I got on SSDI after the typical 2-year wait & because Tysabri is an infusion, it falls under Part B of Medicare. Overall Better coverage than Part D(pill-type medicine). And why Just Me--? Everyone who is disabled & on medicine should be getting medicine for Free, or a minimal co-pay, depending on their Insurance. So who should Pay, You Ask? Whoever has been playing the game of Making Huge Profits from this Medical System.
WE -- You & Me = The Common Man, The Little Guy, etc. has No Say in what's going on. What makes me say this--well, here's the story, no I mean the Facts: my latest EOB (Explanation of Benefits) shows that the hospital where I get my monthly infusions of Tysabri charged Medicare $9,726 (the most ever); Medicare Paid $9,223 and my supplemental paid $503. Because everyone has to cover expenses & try to "stay in the Black", everyone OVERCHARGES for services, medicines, etc. One thing leads to another & the ball keeps rolling. So Medicare is paying the "Fake" price of $9,223 for me to get Tysabri EVERY MONTH-? How ridiculous is this & how long will it go on-? I'm overwhelmed & don't have anything else to say at this time. P.S. I hope everyone had a nice Easter.

It's Green Day

2009-03-17T23:38:00.000-07:00

P.S. Forgot to say Happy St. Patrick's Day-! I had surprise visitors this evening = highschool friends of my Mom's, how cool is that-?

2009-03-17T23:37:00.001-07:00

Hi again, I guess I must be feeling better, as I'm not hanging around on the 'Net, blogging as much as I used to. Even tho I'm housebound much of the time, I find so much to do and I'm extra-slow at it, because I have this handicap called MS. Just went for my 35th Tysabri treatment last week. I got nervous about staying on it for so long, so I went for a consult with a doctor who I consider to be a "Tysabri expert" (Dr. G. in the Phoenix area). He is on some Tysabri committee that meets regularly (drug-maker Biogen). He assured me that I don't have to worry about getting the fatal condition PML, as I have 1 in 6,000 chances of getting it. There is a risk of getting something deadly from Novantrone use (1 in 500), so he has taking ALL of his MS patient off of it. There are roughly 18,000 MS-ers who've been on Tysabri for 2 years, he has 42 MS patients on Tysabri right now. The average time for getting PML is when you've been on Tysabri for 11 - 17 months. So I feel better now about staying on Tysabri. I've tried all the other "popular" MS drugs except Copaxone. I even had 2 treatments of Novantrone in 2005. My heart's "MUGA" was not good after those 2 treatments, so that was enough for me. I've got a scooter to zip around the house in (yes, it's that big). I was feeling lots better in Feb. and "scooted" around too fast. This caused me to catch door frames with my back tires, jam to a halt, and fall over on the floor, still in the sitting position. This is a funny mental image, but I did this not once, but 3 times before I got the hint to "cool my jets". The falls caused no bruises, no broken bones, no blood clots. But a month later, I'm getting a "zinging" like lightning up and down the outside of my left leg (the first fall) whenever I put weight on that leg. My neurologist said yesterday that it sounds like a nerve problem, so in I go for an MRI. I've had many MRI's and I'm curious as to what it will show and what the treatment will be. The ER tried a splint on my leg, but I couldn't stand it for more than 12 hours and took it off. I'm trying the R(Rest) I(Ice) C(Compression) and E(Elevation) treatment, except not the C(Compression). It's helped. Bye for now.

Time keeps on slipping, slipping, slipping...

2009-03-17T22:49:00.000-07:00

Hi again, I guess I must be feeling better, as I'm not hanging around on the 'Net, blogging as much as I used to. Even tho I'm housebound much of the time, I find so much to do & I'm extra-slow at it, because I have this handicap called MS. Just went for my 35th Tysabri treatment last week. I got nervous about staying on it for so long, so I went for a consult with a doctor who I consider to be a "Tysabri expert" (Dr. G. in the Phoenix area). He is on some Tysabri committe that meets regularly (drug-maker Biogen). He assured me that I don't have to worry about getting the fatal condition PML, as I have 1 in 6,000 chances of getting it. There is a risk of getting some deadly from Novantrone use (1 in 500), so he has taking ALL of his MS patient off of it. There are roughly 18,000 MS-ers who've been on Tysabri for 2 years, he has 42 MS patients on Tysabri right now. The average time for getting PML is when you've been on Tysabri for 11 - 17 months. So I feel better now about staying on Tysabri. I've tried all the other "popular" MS drugs except Copaxone. I even had 2 treatments of Novantrone in 2005. My heart's "MUGA" was not good after those 2 treatments, so that was enough for me. I've got a scooter to zip around the house in (yes, it's that big). I was feeling lots better in Feb. & "scooted" around too fast. This caused me to catch door frames with my back tires, jam to a halt, & fall over on the floor, still in the sitting position. This is a funny mental image, but I did this not once, but 3 times before I got the hint to "cool my jets". The falls caused no bruises, no broken bones, no blood clots. But a month later, I'm getting a "zinging" like lightning up & down the outside of my left leg (the first fall) whenever I put weight on that leg. My neurologist said yesterday that it sounds like a nerve problem, so in I go for an MRI. I've had many MRI's & I'm curious as to what it will show & what the treatment will be. The ER tried a splint on my leg, but I couldn't stand it for more than 12 hours & took it off. I'm trying the R(Rest) I(Ice) C(Compression) and E(Elevation) treatment, except not the C(Compression). It's helped. Bye for now.

A New Year, Lots of possibilities

2009-01-11T16:59:00.000-08:00

Happy New Year to All-! Hope everyone is hanging in there--these days are so "down" because of our "troubled enconomy". I am sending out "good vibes" and wishes for the best in 2009. I have been "out of blogging" as my real life has twists & turns of its own. I continue to try different therapies for my old lower back injury, as I continue my Tysabri therapy for my MS. I will be getting my 32nd infusion of Tysabri this Wed. I haven't been having Big Surprises, but when I hear or read about all the different & awful things that MS people put up with, I am Happy about where I am Now. Take it one day at a time & keep hoping.

It's Turkey Day

2008-11-27T08:33:00.000-08:00

Here's hoping that everyone has an enjoyable Thanksgiving. I'm doing So-So with the MS Monster & will have a nice dinner OUT with my husband. The weather iscloudy & rainy

I feel like Rip VanWinkle!

2008-10-25T15:27:00.000-07:00

Hi all MSers--I feel like I have "slept" thru a lot of my life lately--?? I like being Alert, With It, and Ready for Anything! Tho my body may be in the gutter, my MIND doesn't have to be! I took 1/2 of a Provigil this morning because I was feeling Down and knew I would have a Bad Day. Within the hour, I felt NORMAL again & carried on with daily tasks. Provigil is so much better for me than any anti-depressant. Who wants to wait WEEKS for your mood to improve-? But be careful about Drug Interactions. I go to Drugs.com to check drug interactions. The reason that I only take 1/2 Provigil is because I get intermittent heart palpitations. One-half of a 100mg tablet of Provigil is enuf for me. I had a wonderful 55th b-day in Sept. My brother & cousins came to visit, fenced-in my backyard, installed a fountain with water pump, flowers & solar lights. In addition, my dear husband bought a covered swing to put up. It is such a beautiful place to relax now! I'll include a pic next time!

Oops, I missed August!

2008-09-02T15:34:00.000-07:00

Hey guys, I hope everyone had a nice Labor Day weekend. It must be a good sign that I missed out on blogging last month. That means I felt well enuf to do other things besides sit at my computer. Well, not exactly. My bladder doc changed me from Ditropan to Sanctura -- less dry mouth--hurray! But I always check the new drug at www.drugs.com before taking it, & this time I didn't! Well, there was an interference with Sanctura & Zantac(all antacids), so I stopped the Zantac (don't do this without asking your doc first). My regular doc asked me to try Paxil for my depression & suicidal thoughts. Paxil improved my mood within 2 days, no more crying or planning my "end". Thank goodness I'm feeling better emotionally! I'm OK with my MS and hope to stay on Tysabri. Being 2 months in a new house has its stress, but my husband helps out so much. The builders didn't put door knobs or handles on the cabinet doors & drawers, so that's the project for now. Take it easy & stay comfortable!

Summer happens to us all

2008-07-03T16:44:00.001-07:00

Hi friends! How is your summer? Even tho I'm in AZ, we've had rain already! My summer progression is this: I have had 3 epidurals on my lower back, it felt fine, but don't think it helped my back problem. Tysabri seems to be slowing my MS progression, so I can think about other things, like my back problem. I really like Standing & Walking Up Straight, but can't. The back doc 1st said it was "degeneratve disc disease", then said it was arthritis. I'm only in my mid-50's, give me a break. Well, I'm glad Tysabri seems to be putting my MS in the background. Now on to other things that were put "on hold". Thanks Tysabri!

Summer happens to us all

2008-07-03T16:30:00.000-07:00

Hi kids! Remember to stay COOL during the summer heat. And don't forget to Rest if fatigues overcomes you. I get impatient as I can't move as I would like to. NORMAL people can do EVERYTHING! I am so Jealous! My current "hope" is going to a "Nonsurgical" back surgeon about my back problem. I use my scooter more & more as my lower back "pushes me forward" if I try to stand. I hope someone figures out a solution to my problem SOON. Happy 4th to all!

Take the Best for your MS

2008-05-13T09:22:00.001-07:00

My advice to all MSers is to please research & try all available medications for MS. Meds work in dfferent ways for different people. Right now I'm trying to figure out which of my symptoms are MS symptoms & which are from a 30yr. old back injury. Even the docs are having problems doing this. But they both agreed I should have another lumbar epidural done, so away I go! More later, good luck to all!

Keep on taking the Best for your MS

2008-05-13T09:22:00.000-07:00

Please research & try all available medications for MS

Always Look Forward, Don't Look Back!

2008-04-11T10:55:00.000-07:00

I've had some Good News! After being on Tysabri for almost 2 years, I was told I should have a "Neutralizing Antibodies" test for Tysabri. If I come up Positive, then Tysabri is NOT working for me. The local lab took my blood, then they had to let it sit for 30 min., then put it in a centrifuge. Then they had to ship my blood sample packed in ice to Athena Diagnostics in Massachusetts within 48hrs. Wow! My test results were Negative, YaYaYa!!! So on I go with Tysabri!

Still Here & Doing Better!

2008-03-17T10:18:00.000-07:00

Hi to all you bloggers that may pass my way...when I don't write anything here, it's because 1) I don't feel well, 2) I'm feeliing Very Well & am out in the world doing things! Well, this time it is #2. I'm feeling So Well, I forgot about my blogs! Maybe it's because I just closed the deal on a new house! I suddenly feel energized & excited about it! On another note: I'm changing my Tysabri infusion site. For over a year, my dear husband had drive 2 hours south to Phoenix. Now the hospital in northern AZ is starting to give Tysabri to patients, so a Big Thanks to Them! Remember folks, if you want to change your infusion site, you must call Tysabri headquarters (800-456-2255). They will assign you a Case Manager, who will make sure the new infusion site is certified in the "Touch" program, to administer Tysabri. Happy Easter!

Going down a good path!

2008-01-08T15:59:00.000-08:00

Happy New Year to all! I can't believe I haven't blogged here for so long! When I feel better I get absorbed with so many things that "well people" take for granted. My Christmas decorating took extra long this year, but at least I felt like doing it. My dear husband helped out and gave me the encouragement I always need. The best Christmas present is going down a path to feeling better! My 19th infusion of Tysabri is next week & I'm looking forward to it!

Tysabri is NOT a turkey!

2007-11-23T08:18:00.000-08:00

Tysabri continues to show it's GOOD side--it is the Best Medicine for ME! I've had MS for at least 30 years and have tried MANY medicines. I've been taking Tysabri for 1 and 1/2yrs. now, and there's always a nice surprise after I get my monthly infusion. Early this week I drove 2 hours to Phoenix, got my shot, came back home to see my brother installing cabinets for me in the laundry room! What a nice surprise! The other surprise I got was my spastic bladder calmed down & I was able to travel and enjoy visitors & good food without having bathroom emergencies or accidents. Tysabri is doing it's thing--no turkeys here!

Tremors be GONE!

2007-10-06T11:33:00.000-07:00

I just want to send out a positive signal I got that Tysabri is doing something GOOD. I recall my handwriting getting really bad in 1992. I could no longer write, just print letters slowly as I held my tremoring right hand with the other. It was awful as I was still working & needed my handwriting. Over the years I had to give up many things, like not writing checks. It also meant not writing personal cards & letters to people I loved. I missed my non-tremor hands so much! When I first started Tysabri a year ago, my handwriting improved to the point that I could address my X-mas cards & even print short notes! The tremors had stopped! Wow, that was the best present I got for X-mas! But it didn't last long. And NOW, since I've reached my one-year-mark with Tysabri, my handwriting is coming back again! What a blessing! I'm happy with any improvement no matter how small, and of course I want more & more!

Count the UPs not the DOWNs

2007-09-11T13:11:00.000-07:00

First of all, today is Sept. 11th and I need to say this:
God Bless all those affected so deeply & personally by the 9-11 tragedy.
Today is a special day of Remembrance & my thoughts & prayers are with you.

On another note, the purpose of my blog is Tysabri, so here's the latest: I've been on Tysabri a year. With all the positive remarks I've read from users, I thought I'd be experiencing more "miracle improvements" by now. As I wait, there are small miracles I'm grateful for: Tysabri is the EASIEST drug I've ever used for MS (I won't say "my MS" because I don't claim ownership; MS is an Outside Invader). Why is it so easy? 1. My health insurance pays for it, 2. it is only a once a month infusion, and 3. I don't feel any negative side effects. Plus, when I realize that I've had MS for 30 years, it's gonna take some time for any medicine to put the brakes on the "runaway criminal" that's on the loose in my body! So there! Hope is eternal! P.S. I had 10 great days where I felt on the road to recovery! A "fog" had lifted and I was interested in the same Un-Sick things that Un-Sick people are! Hope it returns SOON & stays with me longer!

Push Tysabri to it's MAX-!! And when all else FAILS--

2007-08-20T10:45:00.000-07:00

I HAVE FINISHED MY EXPERIMENTATION and HAVE FINALLY ARRIVED at the COMFORTABLE RESPITE of letting the SOLUMEDROL kick in and do its work to REDUCE INFLAMMATION. I have been waiting for 2 months to go on the traditional MS Replapse routine of 3 days of 1,000mg of Solumedrol/each day, then taper of on prednisone pills for 10 days. When all else FAILS and you keep getting worse, this is the BEST thing to TRY! It works for ME! I have been on Tysabri for a year now, but the progression of my MS is still going on, tho maybe not as fast. This is the 2nd replapse I've had while on Tysabri(Relapse, of course, means NEW or recurring symptoms for more than 24hrs.) I waited for 2 months before treating this Relapse, because I was in the middle of some experiments: I revised my P.T. exercises in May, as I had been doing the same ones for 3 years & my abilities have changed. Also, I tried a chiropractic treatment to see if it would help any MS symptoms, mainly my ability to stand/walk. After 5 treatments, the doc & I decided NO. The 3rd & last experiment was a couple epidurals to my lower back. I have no disabling pain, but it could help MOBILITY. The epidurals made me "loose as a goose" and it became HARDER, not easier, for me to stand. So those 3 experiments are done & I'm off to investigate another course of action as I wait for Tysabri to show something. Hope this info. is of some use to those afflicted with this bothersome "monkey on our backs". Now I need to rest & let my Adrenals recover & kick back in. Potassium, Calcium & D will help (but try to avoid salt)! Eternal Energy to all!

The Touch of Tysabri

2007-08-12T15:49:00.000-07:00

Is IT helping me or am I just in remission? I can't tell, so I will keep on taking it. After all, I've had MS much longer than I've been on this new drug. The Touch of Tysabri is different for all people who try it. But the main suggestion is to Try It and don't be afraid!

Keep On Keepin' On!

2007-07-31T14:58:00.000-07:00

I just got Tysabri #13, a good way to close out the month! I'd say thirteen is a Good Luck number for me. Maybe I can't stand up and shout about it, but it sure is the best for me & the MS Monster! I'll kick it's Can yet! Just a once-a-month infusion for an hour and I'm good to go. No side effects either. I'm going to Keep On Keepin' On...take a walk on the Wild Side and try it--it's a Keeper!

You can WIN with Tysabri

2007-07-23T15:55:00.000-07:00

As you can see, I'm a hyper-critical blogger. Everything has to be Perfect to make me happy. Well, that's one of my faults. I don't want to discourage anyone from trying Tysabri. It's the Best Thing Yet for anyone that's bothered by MS. Even if you are NOT bothered by MS, there is still damage going on. I have had NO side effects with Tysabri. I've been on Tysabri almost one year now. My insurance (Medicare plus a Supplemental) is paying & it hasn't cost me $$$. That's a Big Success for me! Don't get me wrong, just 'cuz I'm on Medicare, doesn't mean I'm a Senior--I'm in my early 50's. I'm sorry to be out of the work world on disability. I miss the social interactions, but the freedoms I enjoy every morning I wake up are such a blessing! I may not be able to jog around my neighborhood, but I have exercises to do every day to keep me as strong as can be. I can still walk with the aid of a walker, but in my dreams I am as normal as can be! I'm suddenly inspired by a song by Kansas: "Carry on my wayward son, there'll be peace when you are done..." Good times to All!

Tysabri Blogs Itself

2007-07-19T09:53:00.000-07:00

Hey out there--what's the Newest? I found out that while on Tysabri, you may develop "Persistently Positive Antibodies". In this case, Tysabri will stop working for you. These "antibodies are proteins made by the body to help fight against foreign invaders" -- your body thinks Tysabri is a Foreign Invader (like bacteria & viruses). This info. is NOT in the Patient Medication Guide, that you get before every monthly infusion. This info. is in a booklet called "Getting Started with Tysabri" that Biogen mailed to me, not knowing I've already been on Tysabri for many months. Why doesn't Biogen include this info. in the Patient Medication Guide, which has been the SAME since I started receiving it almost a year ago-? Oh, well, I guess you can call it one more of the persistent OVERSIGHTS that Biogen is guilty of.

Live Earth Participation

2007-07-07T11:41:00.000-07:00

Hey People, it's 07/07/07!!! I'm One World-oriented and watching Live Earth videos from Japan, China, Germany, Australia, South Africa, Brazil, the UK, Washington D.C. & New York. How Cool is That??!! I'm a "forever environmentalist". I have No kids, my partner & I only have/use one vehicle and we do Not use a dishwasher. I only take One shower/week--no I don't Stink! I only water the yard every 2 weeks (by drip at night, no grass here!). I use the washer & dryer as little as I can. I'm replacing the bulbs in my house with CFLS as the existing bulbs burn out. Now I get to pat myself on the back & go back to watching all the concerts! Wee! and Yaayy!!

On a ROLL

2007-06-26T16:25:00.000-07:00

Hey Desperate Housebounds! Guess what my 4th of July fireworks are this year? I'm getting Tysabri #12! Wee! But there will be no ANNUAL REVIEW at that time. It's a chronological thing, not the # of Tysabri infusions. Go figure! I wonder how many meetings it took for Tysabri Headquarters to decide that? Be aware that this Annual Review is required for continuing Tysabri infusions. Kinda sounds like "Mother may I?"

Still Alive & WELL?

2007-06-26T16:02:00.000-07:00

I survived my epidural, but no big shakes from that. Just 80 mg of Depomedrol, a little bit of THIS to make me relaxed & sleepy like Dwarf Dopey. A little bit of THAT to prevent infection, as I'm on Tysabri & my immune system is suppressed (oh really?). The best thing about this ordeal was the soda I got while "recovering". I can try another epidural halfway between my next 2 Tysabri infusions (don't want to confuse myself). Ha! Is this called "self-medicating"-? I don't know if my 30-year-old back injury will "wake up and smell the roses", i.e. behave like a normal back & hold me up straight. If not, then it may just be the MS. Huh--what a discovery! It's about time for discoveries! Are you listening TYSABRI? Don't hold out on me NOW!

Continuing Coverage

2007-06-26T15:47:00.000-07:00

Don't touch that dial(computer key)! Or your Post will Vanish! Whew! Here today, gone Tysabri! Progress in the midst of Tysabri = I can make it to the bathroom without having an accident! Big Deal! That's how I'm SUPPOSED to function, am I due to thank Tysabri for that? Huh! Where's the SIGNIFICANT progress? Am I supposed to be grateful for breadcrumbs when the medicine is costing me an ARM and a LEG? Huh again! You can't see me turning my nose up and hobbling away. Biogen/Elan is making a MINT on me! Do you think they would send even a HINT of THANKS for my support? Huh! No free meals with them!

Epidurals, Here I Come!

2007-06-26T15:33:00.000-07:00

Hey! I'm still alive after that epidural! 80 mg of Depomedrol, plus a little something to relax me (made me like Dwarf Dopey, and a little something to help prevent infection (since I'm on Tysabri my immune system is being suppressed). I'm in heaven! I'm standing up straight for more than a minute! I'm brushing my teeth & putting on make-up without having to sit down! OK, now, hold you horses -- this result isn't happening Yet, but this is the Anticipated Outcome! Keep your fingers crossed for me please

2007-06-13T17:07:00.000-07:00

DID ANYONE GET THE 6th MONTH TYSABRI REVIEW YET? The first question on the form(to the doctor) = Is the patient still ALIVE? My doc & I got a laugh out of that! Whew!

Posting till the Cows Come Home

2007-06-13T16:55:00.000-07:00

I guess I should make some more "posts" instead of commenting to the comments. Not used to this blog stuff. I'm impatience incorporated. I don't have to wait an hour after my infusion anymore. I don't have to patiently sit while I'm asked the same questions before I can get my infusion. I guess the same info. is asked of me informally now (don't remember the questions). I had to coordinate the infusion nurse with my neuro. after I had Prednisolone IV for a flare-up; otherwise I wouldn't have gotten my Tysabri. See? You have to BE well to GET well! Good luck to all those out there in Tysabri Land! There's nothing to be afraid of after you passs the 3rd month and are over the risk of an allergic reaction.

Blogger: Tysabri - Post a Comment

2007-06-13T13:34:00.000-07:00

Blogger: Tysabri - Post a Comment

Help Me! Help Me! I'm on Tysabri!

2007-06-11T08:18:00.000-07:00

Welcome...your call may be monitored to insure you receive the highest quality of service. Please listen carefully to the menu options: Press 1 to receive full prescribing info. This will take 10 min. & you won't end up knowing anything more than you already know. Press 2 to hear the Black Box warning. This scares the hell out of you. Press 3 to talk to a live body, no matter what their title is, they are just an office clerk, who will put you on hold, then return in a couple minutes, saying they CANNOT HELP YOU & you should ask your doctor. (Been there, done that.) My doctor has a similar complaint when he calls. Where is the REAL Help Line for this medicine? I am out alone in the world of Tysabri. Help!