On January 6, 2000, I walked downstairs and into the bathroom on the main level. Nothing seemed different, I did what I had to, then I stood up to leave. When I did stand up, I had hit my head on the sink in front of me, which I had never done in all the nearly 13 years I had lived there. When I hit my head, I had closed my eyes. When I opened them again, I noticed I couldn't see out of the top half of my right eye. I get migranes a lot, so I passed it off as a migrane light, but when the "migrane" didn't go away by the end of the day, I knew it was something more serious. BTW, just so there is no confusion, me hitting my head on the sink DID NOT give me (what Ithought was ) MS or Optic neritis! We paid a visit to my neurologist, he said that MS was a possibility and he told me that I likely had a mini-stroke. After that, I was told to take an 81mg asprin everyday.I saw an eye doctor. Of course, he didn't have a clue what I had either. I know now in hindsight that I should have gotten a second opinion from another neurologist. By the way, that eye doctor said that I had a scab in my eye which he said was "Clear as day." Obviously, he had no idea what I had, or what he was talking about. (9/13/09-The blindspot in my right eye actually partially did fully recover, now 8 1/2 years later.) The first day I went to school with the mysterious "blindspot," I had no idea what that would mean until I was in the hospital over 2 years later. Every single one of my "friends" that I told my problem to told me to close my left eye, as though they thought I was making this up! What was worse was that when I did close my left eye, I could still partially see out of my right eye, but I couldn't tell anyone that, because they would think that I was surely making this up. This is what every one of them did: They all flicked me off!
Fast-forward to May 18, 2002 My mother was on vacation in North Carolina, and I was home with my younger brother, Dan, then 17. He was on the phone with one of his friends. Suddenly, I was laughing uncontrolably. I went outside to get some air, then I fell backwards into the door that leads into the garage. I got up and walked back inside to the kitchen, still laughing. I then fell backwards into one of the chairs to the kitchen table. This time, however, I couldn't get up again My brother thought I had finally gone nuts. He told his friend, "My sister's acting stupid. I'll call you back." He then tried to pull me up, but he ended up dragging my head into the refrigerator. At about that time, my mother called to see how everything was. Dan put me on the phone, and my own mother, who knows I detest alcohol, thought I was drunk. I asked her how she thought I could be such a hypocrite, after all the times I had said I would never touch alcohol because I can't stand drunks.
About three months later, on July 15, I was on my way back home after visiting a friend in Chesapeake, VA. I turned onto a dirt road, which is about a mile from my house. Suddenly, I saw this vehicle which looked like a jeep. The driver was speeding over the hill and lost control. I later found out that he had been drinking. My Nissan Sentra was totaled, but I fourtunately walked away with what later became a scar on my left wrist. (That was caused by the airbag in my steering wheel) Both of my airbags had imploded, so the car was no good anymore. Getting back to my story, the night went on, I had no idea what was wrong with me. I did my normal routine (watching and recording All in the Family) The next day, I wasn't any better. After my Aunt Gerry heard what happened, she called for an ambulance. Of course, I thought she was over-reacting at the time, I still didn't know what was wrong with me. As I described my left leg, it moved like "elastic rubber jelly."
What is Multiple Sclerosis?
MS is a neurological disorder in which scattered patches of scarring form in the CNS (Central Nervous System). There are four kinds of known forms of MS:
-1. Relapsing-Remitting--acute attacks followed by full or partial recovery, but with some remaining symptoms
-2.Secondary-Progressive--Begins as Relapsing -Remitting, then in about 10 to 15 years, there is a slow, steady decrease in over-all condition in about 50% of all relapsing-remitting patients (Read about Neil Cavuto's fight with SP here.)
-3. Primary-Progressive--Slow worsening from onset, sometimes with occassional or temporary improvement. Most common after 40.
4. -Progressive-Relapsing--Progression from onset, but later on, one or more attacks occur
The only FDA-approved treatments available are all in the forms of shots: (Click here for possible pill treatments!)
What forms of treatments are available?(Click on each for their information)
--Avonex--once a week (Works best for people who have never had previous attacks) 1-800-456-2255 --Betaseron--I am off of this; I'm going to restart Tysabri in August (Caregivers) 1-800-788-1476* That did not happen 9/28/07-I havre been re-diagnosed wirh having strokes **There is a pill treatment called Low-Dose-Naltrexone (LDN, for short), I am no longer taking this, since they've decided I have been having strokes instead.
*To try LDN for yourself, have your neurologist call (212)-685-5000. They are located at "2 Park Avenue New York, NY, 10016," and fairly cheap!
My cousin Paul was working with the company that is coming out with Nine (9) new treatments The website is www.biogenidec.com The ones he knows about right now are called Antegren (Tysabri) and Natalizamab (The first one is for people who do not have a serious form of MS, i.e...They aren't in a wheelchair. The second one is for people in a wheelchair, or those who have a more advanced form of the disease)
February 17, 2005-My Tysabri treatment was supposed to be on the 16th, but got delayed until today, the 17th of February because there was no nurse there. I was sick a few days later on the 22nd, but it's too soon to know if this incident is a side effect, or just a coincidence. I was told by my nurse NOT to take my Betaseron shot the same day I had this procedure done, so I get a day off of my shot!
Read the info about Tysabri here for further details. Well it is August 13 now, and I had a massive attack back on July 28, which left me unable to speak. My neurologist told me today that I am an "unusual case" because I have a bunch of syptoms that are not typical. (I'm sorry I can't be more descriptive...that doesn't exactly help me at all either) The name of my condition which makes it difficult to speak is called DYSARTHIA. According to Web on A, (under #7), "Most patients have articulation problems, which cause them to have imprecise consonants." September 19, 2004 Okay, I think it's been long enough now. I never did write about my experience in the hospital. That same night I was out with Margaret, (see story below) I tried to climb my stairs, but I could barely make it past the first three or four. I foolishly told Margaret earlier that I would be okay home alone until my brother got home. (He was in a different town completely.) After I could not climb the stairs, I tried calling my brother. My voice was jibberish, and he couldn' t understand a word I said. (I couldn't understand what the hell I said either--I just wanted him to get home now!) Anyway, he told me to call 911. I couldn't talk to them, but fortunately, they can track down whoever calls them. They got to my house after I had just fallen out of the kitchen door, fell down the two stairs that lead into the kitchen and crashed into the cabinet. I must have looked like I was drunk! My brother and the paramedics arrived at the same time. They asked what was wrong with me. My brother told them that I have MS. (Nobody knew at this point besides me that I couldn't speak, although my brother heard my jibberish over the phone, I don't think he knew just how severe it was just yet.) One thing I can say about paramedics--They might know CPR, but don't ever expect them to know how to give an MS patient a shot! It just happened to be the night I get my shot. I lost 2 vials of Betaseron because they had never dealt with an MS patient before! They didn't have a clue how to use it. They thought it was like giving insulin to diabetics. They never got that far, since they wasted two of them, and I told them to stop. (Betaseron's in a pre-filled syringe, and they ain't cheap!) Well, I didn't get my shot that night, which was the first time in the 2 1/2 years since I was diagnosed that I missed a shot. My mother had called me earlier that day before all this occurred, so she didn't think anything would go wrong a few hours later. She knew that I was going out with Margaret to Wendy's later that night, so there was no reason to call again. My brother said that he hated to ruin her vacation again, but she had to know about this. (Luckily, my mother had just recently got a better cell phone than the one she'd had for years.) He called her boyfriend had answered the phone and my brother said, "Where's mom?! Put mom on the phone! Katie's having another attack!" My mother picked the phone up. She knew there was something wrong when she was talking to my brother, who then put her on the phone with the paramedics. She decided to cut her vacation short by a few days to be with me. Since she was in Utah and we live in Virginia, she had to fly back. Last time this happened, she was in North Carolina, so she drove back when I had my MS attack for the first time. (We didn't know anything about MS at the time, since we did not know what I had just yet.) The ride to the hospital was very uncomfortable, because I just knew they wanted to stick me. (Yeah, make me their personal pincushion!) The emergency room was no better, except that my brother eventually came and sat with me. Before that, everyone took turns stabbing me, since I happened to be cursed with rolling veins that are 1) very deep, so 2) nobody can detect where the hell they are. I needed paper to write with since I could not talk at all, but that didn't do any good, since I couldn't hold the pen. I was also drooling excessively, so I didn't exactly look my best. It was so hard not being able to commuicate. I wanted to tell the people in the emergency room about my rolling veins, but I could not write or talk! Fortunately, my brother arrived by that point. I tried to tell him to tell them that I have rolling veins. He told them, but they said they already knew that. So what did they do about it? They stabbed me repeatedly! I don't remember which bruises were from the emergency room and which were from my hospital room, but my left arm was covered with bruises for several weeks after I left the hospital on August 4. By the way, the whole time I was in the hospital, I had no concept of what day of the week it was. I was expecting to see a lot more of my mom and brother than I did. (I wasn't being greedy, I was lonely.) I did watch some of my TV shows while I was there, but I noticed that Neil Cavuto of Fox News was off during the week that I was in the hospital. I emailed him a few days later when I was back home and told him I missed seeing him while I was in the hospital, because seeing him gives me hope and inspiration. He eventually replied back to me a few days later. See me & Neil Cavuto on this page.
Who have I heard of with MS?
To see the celebrities with MS, go to this page and click on the MSCelebs link at the top of the page
Just so you don't feel cheated, there's: Annette Funicello, David L. Lander (Squiggy from Laverne and Shirley), Montel Williams,Teri Garr (Inga from the movie Young Frankenstein and the mother in the movie Mr. Mom starring Michael Keaton), country singer Clay Walker, comedian Jonathan Katz, racecar driver Kelly Sutton, singer Victoria Williams, Alan Osmond (of the singing group The Osmonds), and news anchor Neil Cavuto (Fox News). and Ann Romney (Mitt Romney's wife) PLUS: A tribute to MS patients Ronnie Lane (of Small Faces fame) and comedian Richard Pryor, and Lena Hornem all three who are no longer with us.
What are some symptoms of MS?
Like I said before, not all cases of MS are the same, so not everyone will have the same symptoms. I will share some that I have had, as well as some that I know others have:
3.weakness in one or both legs
4.blindness (or partial blindness) in one or both eyes (known as "optic neuritis")
5.loss of bladder control
6. weakness in the hands (i.e. losing the ability to write)
7. unexpected urge to vomit
8. Muscle Spasms
9. Memory loss/lapses in memory
10. Losing the abitlity to speak/vocal difficulties/ Dysarthria (An impairment to your throat, i.e., NOT being able to swallow, excessive drooling)
11. The most common one! Fatigue! (How could I forget...Easily!)
What can be done about these symptoms?
I will answer in the same order as I wrote the syptoms:
1. stop and rest. If you are driving, it is best that you pull over to a side road. You might possibly get sick. Get Physical Therapy (PT) if you haven't already.
2. Same advice as above
3. sit down anywhere you can. Again, if you have not done so, get PT. If you have fallen and can't get up, ask somebody for assistance. Don't think you can do it yourself. This happened to me. I slipped on some ice at my school, and I thought I could get up by myself,so I said, "Oh, I'll be fine" when someone offered to help me up, but I ended up slipping a second time. When someone else offered to help, I put my pride away, and gladly accepted his offer.
4. Unfortunately, until there is a cure for MS, all that the doctors can do is put you on liquid steroids. What they will do is hook you up to an IV, and the steroids will drip into your veins. It is a very unpleasant experience, and when they drip into you for the first time, even if you have had it done before, it burns like hell.*If you have never been put on oral steriods, trust me when I say consume them with apple sauce, they taste quite nasty otherwise! Even if you have been put on oral steroids in the past, if you are looking for a new way to take them without the awful taste, please try the apple sauce!"
5. Ask your doctor to put you on Detrol LA. It's only 4 mg, but it works.
6. Get Occupational Therapy (OT)
7. Go to the nearest bathroom, if you are driving, pull over and open your door.
8. I wish I knew. I just had one while writing this.
9. Again, I wish I knew, in fact, I was trying to remember what I wanted to add to the list, then I remembered--that was it--memory loss!*Doctors have been doing studies with cholesterol-lowering pills such as Lipitor and Zocor that supposedly showed improvement with patients who could tolerate the side effects. (I tried, but I did have reactions to Lipitor such as clicking unknowingly with my tongue and grinding my teeth. Again, not everybody had the same reactions, so what didn't work for me might work for someone else.)*
10. Get Speech Therapy IMMEDIATELY When I found out that I would need speech therapy, there unfortunately was a short supply of qualified speech therapists working in my area during the summer months
11. Get plenty of extra sleep, or take a safe sleep aide.
Giving yourself or an MS patient a shot
**If you have MS and experience pink or red marks at the injection site, try this:
1. Get a plastic bag with about 3 large ice cubes
2. Have your alcohol swab ready (If you have a reddish-brown bottle of ANBESOL, try rubbing some of that into the swab before you put it on the skin--it numbs the skin, making the injections more barable!)<--If Anbesol no longer works for you (as it stopped working for me), try the spray "Solarcaine."
3. Put the ice against your skin for 45-60 seconds
4. Clean injection site with swab
5. Now you can give yourself/the patient the shot
6. After you finish, rub the alcohol swab against the area with a lot of pressure
7. Put the ice on your skin again
8. Get a clean napkin to place behind/in front of the injection site (this helps keep your clothes blood-free)
***Important!!!Attn: MS Patients***(If you have not been given an Autoject, or whatever automatic pen that is available to you, please get one. It is so much less painful! I have used the autoject almost as long as I have been diagnosed, and I would never consider going back to the old way without the autoject, ever! Just for the record, I HAD TO SPECIAL ORDER MINE, so I assume you probably will/would have to, also!)
DISCLAIMER Again, I emphasize that I AM NOT A DOCTOR, I am just trying to give some helpful suggestions to anyone who might be interested in trying the same method as I do. Maybe you will find my way less painful. I am not looking to get sued by anyone! I have said plenty of times that I am not a doctor. If my way doesn't work, just do it a different way from now on
Hints on Taking Steriods:
These are all just suggestions trying to help you. If you have your own way that works, I would love to post any other suggestions in addition to these I have listed:
1. Take them and any other pills you normally take with applesauce by putting the steriod IN the applesauce to cover the terrible taste
2. Take away the after-taste with orange juice (Lots of Pulp works best)*(I use a shotglass to drink mine.)*
****I had to stop the oral steriods in November '04 because they made my hair fall out****
MS-Related Tremor I thought this might be of interest to MS patients...(Courtesy of MSWatch)
What Is Tremor?
Some people with MS may experience a frustrating symptom known as tremor. The National Multiple Sclerosis Society defines tremor as "an involuntary rhythmic shaking movement of the muscles."1A
Tremor can range from subtle shaking to uncontrollable muscle movement. It may impact areas such as the head, face, trunk, arms, legs and vocal cords.2A Typical triggers that may worsen MS-related tremor include stress and fatigue.1C,1D
MS-related tremor may occur when demyelination or scarring damages the nerve fibers in the thalamus. The thalamus is a large group of nerve cells in the center of the brain responsible for releasing incoming sensory impulses (except smell) to higher nerve centers.1A,3A
Types of Tremor: (These are all courtesy of mswatch)
There are many types of tremor, including the following:
Intention tremor: This is the most common and often most debilitating type of tremor in people with MS. Intention tremor occurs only when a person is moving, not during rest. It may happen when reaching for an object, or moving a hand or foot to a specific place.4A
Postural tremor: This occurs when a person is supporting a limb or the entire body against gravity. For instance, someone with postural tremor may experience shaking when standing or sitting, but not when lying.4A
Nystagmus: This tremor occurs in the eyes, causing "jumpiness" in the eyes.4A
While there is no cure for tremor, you may be able to manage its symptoms1A with one or more of the following methods:
Physical therapy or occupational therapy1E
Stress management techniques1A
Electrode implants, also known as "deep brain stimulation" or DBS.1G
Tremor affects each person differently, so if you experience tremor, work with your health care team to develop an individualized treatment plan.1A
For more information about MS-related tremor and treatment options, contact your physician or local MS chapter at 800-FIGHT MS.
Read here about Tysabri making a comeback! Read about Vitamin D and MS here.
August 6, 2004 Life can just be unfair. Just a few hours after I last updated this on July 28, 2004, I had just about my worse attack to date. Apparently, a lesion in my brain was attacked, and I could not form basic words! This is very serious, I'm not joking! It was literally deja-vu all over again! My mother had gone away on vacation, this time in Utah, and my brother told her that he was sorry to do this to her again, but she would have to cut another vacation short and get home immediately. It's been a few weeks since my attack, and I am barely forming sentences yet. This time I was out with my good friend, Margaret. All of the sudden, I didn't know what was wrong with myself! I don't like to admit when I get upset, but I was for no reason! Nothing happened. Margaret didn't say anything to upset me. We had just gone ut to Wendy's, and it just happened. It's just part of the disease. I felt so bad because the last time she saw me, I told her I would be fine. (I don't like having people worry about me, whether I have a chronic disease or not.) She must have been so worried about me after the way I acted. Yes, I know it's part of the disease. She was perfectly willing to stay with me, but I didn't know how much worse I was going to get. I remember waking up in the hospital a few days later and thinking that someone came into my house during the night and turned my house into the hospital. To say the least, I was very confused!
ANTEGREN® ONE-YEAR DATA FROM PHASE III AFFIRM STUDY SHOWED COMPELLING RESULTS IN
MEETING PRIMARY ENDPOINT IN MULTIPLE SCLEROSIS
One-Year Data Show 66% Reduction in Relapse Rate
Cambridge, MA; San Diego, CA; Dublin, Ireland - November 8, 2004 - Biogen Idec
(NASDAQ: BIIB) and Elan Corporation, plc (NYSE: ELN) announced today that one-year data from the Phase III ANTEGREN® (natalizumab) AFFIRM trial met the primary endpoint of clinical relapse rate reduction. In this international study of 942 patients with relapsing-remitting multiple sclerosis (RRMS), natalizumab reduced the rate of relapses by 66 percent compared to placebo, a statistically significant result. All secondary endpoints were also met. These data were
presented to investigators involved in the Phase III MS program for natalizumab at a meeting over the weekend. Natalizumab is currently under regulatory review
for approval as a treatment for MS.
The AFFIRM study is a two-year trial evaluating the effect of natalizumab on the
progression of disability and the rate of relapses in MS. The primary endpoint
of the one-year analysis was relapse rate. The companies anticipate that the
two-year results will be available in the first half of 2005.
Adverse events occurring in at least 5 percent of natalizumab-treated patients
that were 2 percent more common than in placebo-treated patients included
headache, fatigue and arthralgia. The overall incidence of infection was similar
between the groups. Serious infections occurred in 1 percent of placebo-treated
patients and 2 percent of natalizumab-treated patients. Serious
hypersensitivity-like reactions occurred in approximately 1 percent of
"These data demonstrate that natalizumab dramatically reduced the rate of
relapses at one year," said Burt Adelman, MD, executive vice president,
Development, Biogen Idec. "We believe natalizumab, with its novel mechanism of
action, has the potential to be a significant step forward in the treatment of MS."
"Natalizumab has the potential to make a real difference in the lives of MS
patients," said Lars Ekman, executive vice president and president, Research and
Development, Elan. "We are working closely with regulatory authorities to make
natalizumab available to patients in need as soon as we can."
The AFFIRM trial is a two-year, randomized, multi-center, placebo-controlled,
double-blind study of 942 patients evaluating the effect of natalizumab monotherapy on the progression of disability in MS and the rate of clinical relapses. Secondary endpoints at one year included the number of new or newly enlarging T2-hyperintense lesions, the number of gadolinium-enhancing lesions and the proportion of patients who were relapse free. To enroll, patients had to be diagnosed with a relapsing form of MS and had to have experienced at least
one relapse in the previous year. Patients were randomized to receive a 300 mg IV infusion of natalizumab (n=627) or placebo (n=315) once a month.
"This was a rigorous, well-conducted clinical trial across 99 sites worldwide that yielded compelling one-year results," said Chris Polman, MD, PhD, lead investigator of the AFFIRM study, professor of neurology at Free University Medical Centre, and clinical and scientific director of the Multiple Sclerosis Centre at the VU Medical Centre, Amsterdam. "These data suggest that natalizumab may become a promising new treatment option for patients with MS and could help address a significant unmet need."
Biogen Idec and Elan have submitted regulatory applications for the approval of natalizumab as a treatment for MS in the U.S., EU, Canada, and Australia based on one-year data from two ongoing Phase III trials. On May 25, the companies announced that they had submitted a Biologics License Application (BLA) to the U.S. Food and Drug Administration (FDA). The FDA designated natalizumab for Priority Review and Accelerated Approval. Based on the FDA's designation of Priority Review, the companies anticipate action by the FDA approximately six
months from the submission date, rather than 10 months for a standard review. Regulatory authorities in Canada and Australia have also designated natalizumab for Priority Review, and the European Medicines Agency (EMEA) is actively reviewing the application.
A second Phase III trial, SENTINEL, is a two-year randomized, multi-center, placebo-controlled, double-blind study of approximately 1,200 patients with relapsing-remitting MS, evaluating the effect of the combination of natalizumab and AVONEX® (Interferon beta-1a) compared with AVONEX alone on the progression of disability and the rate of clinical relapses.
MS is a chronic disease of the central nervous system that affects approximately
400,000 people in North America and more than one million people worldwide. It
is a disease that affects more women than men, with onset typically occurring
between 20 and 40 years of age. Symptoms of MS may include vision problems, loss
of balance, numbness, difficulty walking and paralysis.
About ANTEGREN (natalizumab) (Now Tysabri)
Natalizumab, a humanized monoclonal antibody, is the first alpha-4 integrin antagonist in the new selective adhesion molecule (SAM) inhibitor class.
It is designed to inhibit the migration of immune cells into tissues where they may cause or maintain inflammation. To date, over 2,800 patients have received natalizumab in clinical trials.
Biogen Idec and Elan are collaborating equally on the development of natalizumab
in MS, Crohn's disease (CD), and rheumatoid arthritis (RA). In September 2004, a Marketing Authorisation Application (MAA) for CD was filed with the EMEA based on Phase III studies, and another Phase I.
To the organization:
It is with great pleasure that we inform you that the FDA has granted TYSABRIÂ®
(natalizumab, formerly known as ANTEGREN) accelerated approval for the treatment
of relapsing forms of multiple sclerosis (MS). FDA approval of TYSABRI comes more than one year ahead of schedule and is major advance in the treatment of MS. It also brings new hope to hundreds of thousands of patients and is a significant corporate milestone for Biogen Idec.
As we announced a couple of weeks ago with our partner, Elan, TYSABRI showed a very powerful result in our Phase III study, called AFFIRM. This clinical trial demonstrated that TYSABRI showed a dramatic 66% reduction in the relapse rate for MS patients. By way of reminder, other MS therapies currently on the market reduce relapses by approximately a 1/3.
In addition, the proportion of patients who remained relapse free was 76 percent in the TYSABRI group (vs. 53 percent in the placebo group). TYSABRI also had a significant impact on patient brain lesions, as measured by MRI.
You may recall that, as part of the SENTINEL clinical trial program, we were studying TYSABRI in combination with AVONEX® (Interferon beta-1a). Today we also announced that TYSABRI is approved as an add-on therapy to AVONEX.
The addition of TYSABRI to AVONEX resulted in a 54 percent reduction in the relapse rate over the effect of AVONEX plus placebo. In addition, 67 percent of the patients on TYSABRI plus AVONEX were relapse free over the course of one year, as compared to 46 percent of patients on AVONEX alone. When combined with AVONEX, TYSABRI also showed a profound impact on patient brain lesions.
It is very important to note that both the AFFIRM and SENTINEL trials confirmed that TYSABRI was well tolerated and has a favorable safety profile.
Amid all of this very positive news, we also announced today that the name of the drug has changed from ANTEGREN to TYSABRI. This is actually a rather common occurrence in the biotech and pharmaceutical industries. For some time we were aware that the FDA viewed the name ANTEGREN as too similar to other approved therapies. We had ongoing discussions with the FDA on this matter, and jointly agreed on the name TYSABRI. We expect physicians and patients to rapidly accept the new name.
Finally, today's good news about TYSABRI comes as a direct result of hardworking and dedicated employees at Biogen Idec and Elan. Biogen Idec's scientific contributions to TYSABRI reach back as far as 1989, when our scientists first discovered the cell surfaces receptor for alpha-4 beta-1 integrin. Since that time, hundreds of you have played a central role in making
this day a reality. From running important pre-clinical & clinical trials to working with the FDA, manufacturing TYSABRI to preparing for the commercial launch: you have showed your fellow employees and the outside world that you exemplify two of Biogen Idec's core values: Team as a Source of Strength & Commitment to Those We Serve.
Thank you for your passion, commitment, and unyielding spirit of innovation. The countless hours you have devoted to the TYSABRI program will now give new hope to the more than 400,000 U.S. patients living with MS.
2/12/07--As it turns out, apparently Tysabri has made a return to the market!! My friend (who previously had 3 doses) is back on it and will keep me updated. She says she is not taking any shot therapies while she is taking Tysabri. I only had ONE treatment and I lived!
Possible Pill Treatments
-There is a yellow pill called Oral cladribine, which was launched in September 2006 and is currently in phase trial 3.
-There is a green & white pill called Fingolimod, which is still in trial phase 2.
-The final one is a red pill called BG00012, but it, too, is still in trial phase 2.
According to the magazine Inside MS, " ...but assuming that the data from future trials are positive, it will most likely be several more years before an oral MS drug is available."--Dr. John Richert, MD.
I had surgery for the first time yesterday (on May 24, 2007). See how (below )unprofessional they were!
I wrote the following to my friend the morning of May 25:
I'll tell you what happened to me yesterday, but I have to warn you, you might not believe me because it is so awful:
This is also why I don't trust PWC HOSPITAL!
For the past 5 weeks or so, I've had this, um ,"absess", on the back of my right thigh. Yesterday, I saw my neurologist. She took one look at it and said, "Oh my god! You need to get that taken care of right now!"
So she called the dermatologist. The earliest they could do was in one MONTH. My neurologist said, "That's the earliest you have? This needs to be looked at right away!"
Next, she called the floor right under the floor we were on. They could fit me in.
If I don't sound happy, it's because I THOUGHT I was just going to me looked at by the doctor; NOT operated on!!!!!!!!!!
He took one look at it and said the same thing my neurologist said--"It needs to be looked at right now."
He decided he was going to opperate on me then and there. He put numbing crap on me, which would have been nice if he actually WAITED for more than litarally 2 seconds for it to take effect!
I should mention that my mother always comes along with me whenever we go to the neuriologist. He started slicing the back of my thigh IMMEDIATELY! (Usually, whenever my mother is there, the staff is usually gentle with me--NOT yesterday!)
Here's the topper:
After all that, the doctor and the nurse-aide LEFT the room, without leaving us any instructions! I mean, they left us N-O-T-H-I-N-G!!! Not anything! They BOTH left my mother to clean up EVERYTHING and basically fend for herself as well as myself...
IT'S NO WONDER I DISPISE PWC HOSPITAL!!!!!!!!!!!!!!!!!!!!!
I first dealt with them back in May 2002 when I had my first MS attack (I didn't know what I was having at first, but they had performed a spinal tap on me...The LOST the results! I still don't know to this day what the results were.)<--I later found out from my male neurologist that the results were NOT lost....5 years later!
If that happened to anybody else, there'd be a lawsuit!
The second time was even worse because I lost my ability to speak. Oh, were the staff ever UNSYMPATHIC to me!!!!!! I didn't ask for any of this to happen! It just happened!
I wasn't bossing the staff around or anything like that....They just assumed I was faking "not being able to communicate." Know what? It has been ever since that day back in July 2004 that I last spoke clearly. Guess I wasn't faking it, huh?
The doctor had asked my mother before he cut me if she was going to faint, and she said that she's the one who gives me my shots. My mom also asked the doctor to please be gentle with me because I have sensitive skin. (Yeah, right! LIKE THAT'S GOING TO HAPPEN!)
Sorry to vent all this to you, but really feel I've been taken advantage of. I feel like I am everybody's guinea pig.
To the same friend about my problems on June 11, 2007:
I was away on vacation last week, but it was anything BUT a vacation. (I might be a while, explaining this.):
on June 11th (Monday) I knew I was in trouble when I had trouble swallowing. It got worse from there. Keep in mind that I'm supposed to be on "vacation."
Well ,then, rather than take chances, my mother got a hold of my neurologist. (Of course, she left early...Just my luck!)
Wait until you hear what happened next: (I hope you NEVER have to go through this!)
There had been this absess festuring in my right thigh for some time now...I can't even begin to describe the PAIN! They don't wait for the spot to go numb. No, no. The nurse DUG into my skin.
On top of all this, I was dehyradated because I was having problems swallowing. I know. What a "vacation!" This was anything but.
It sounds like hell, and, beleve me, it was. Oh! Did I mention that I happened to be cursed with "rolling veins?" My arms look like crap...Both of them. There's no such thing as "good luck" with me.
If I sound like I'm feeling sorry for myself, I'm not trying to.
Sometimes, I have to wonder why I have to go through all of this crap. Then I think of others who are worse off. (It sounds impossible, but I know that they're out there.)
Just because I had the week from hell doesn't mean you should as well.
*I will leave all MS info I have written so far in case anyone wants to use it as a reference*
It is now June 20, 2008, and I was at Johns Hopkins in Baltimore yesterday.
This is what they say I have now: ANTIPHOSPHOLIPID SYNDROME
APS is an abbreviation for Antiphospholipid Antibody Syndrome. APS is also called APLS or APLA in the United States and Hughes Syndrome or Sticky Blood in the UK.
Due to copyright laws, I cannot copy and paste too much, but I can say that this sums up just what that is:
APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.