I want my mommy

OK, so just because I'm 50, I still want my mom.  I want to go back to when i was a little girl and feeling down, mom was always there with your favorite foods or just a hug... today is one of those days.  22 years ago today my daughter was born, maybe that's why i'm feeling a little low today.  She has her own life, she lives about 2 hours away, is working full time and going to school... (those were the days)  I'm craving my old favorite, fish and chips wrapped in newspaper with vinegar which I would gladly go get it, except England is quite a long long way from Florida.  Mom is about 2 hours away and too far for me to drive plus she's at the doctor's office every day with my dad.  So here I sit with the three dogs, my sewing and my computer and waiting for the rain.  Ok, i've vented, got it off my chest, and now going back to my cross stitch.... Hope everyone is feeling well today.

Sciatica - - - - ouch

I thought I'd just pulled something in my back when I lifted up a bag (40lb) of soil.  The first three days were excruciating (or so I thought) but now it's 10 times worse and going down my leg, but not the normal sciatic pain where it goes down the back of the leg, this is the front of the leg.  None of the over the counter medications are working and am currently sitting here sitting on a heating pad.   Sometimes I think, "what's the point."  I can't work, I'm doing nothing all day (except my cross stitch), money is getting tighter and tighter, the heat of summer is coming... I have a lot to look forward to.  Sorry guys, pity party for one today.

This should make you smile....

I've had a lousy couple of days and am in an even worse mood today, until I received this joke.... enjoy

White House Bathroom

Before the 2001 inauguration of George Bush, he was invited to a get acquainted tour of the White House. After drinking several glasses of iced tea, he asked outgoing President Bill Clinton if he could use his personal bathroom. When he entered Clinton's private toilet, he was astonished to see that President Clinton had a solid gold urinal. 

That afternoon, George told his wife, Laura, about the urinal. 'Just think,' he  said, 'when I am President, I too could have a gold urinal.  But I wouldn't do something so self-indulgent!' 

Later, when Laura had lunch with Hillary at her tour of the White House, she told Hillary how impressed George had been at his discovery of the fact that, in his private bathroom, the President had a gold urinal.

That evening, when Bill and Hillary were getting ready for bed, Hillary smiled, and said to Bill, 'I found out who pissed in your saxophone.'

MS Bracelet

I received my MS bracelet and love it.  I will be getting more in and if you are interested in one (or more), let me know (leave a comment or send me an email).  They will be $7.00 each. 

Had to go out food shopping today and boy the heat here in Florida is a killer.... again as soon as I stepped out the door my arms and legs started tingling.  Not the tingling like pins and needles, this was quick short pinpricks, like ants crawling and biting over the body... I have to remind myself to ask the neurologist is a part of MS as I've not noticed it before, but then again, it's almost 90 degrees here today.

Medicare

I finally got my Medicare card today.... not effective until July 1, but it's getting closer.  I have no idea if the doctor's will still charge me - I know when I was working and had insurance, all I had to pay was $20.00.  The only time I have been to the doctor since not having any insurance and just to get blood work cost me over $200.00.  I will have to go back to the neurologist but not looking forward to it as they just want to prescribe the shots, which I won't do anymore and the new oral medicine makes me a little scared (anyone on the new oral medication, please let me know how you are doing on it, the name of it, and how you feel in general).  Not working has decreased my exacerbations but the tiredness is always there although I don't worry anymore because I can sleep whenever I get tired.  Would sure love some energy though... haven't done laundry in quite some time it's just so tiring and the floor really needs washing, and before you ask, NO my husband is not capable of washing the floor LOL... he does a pretty good job on the laundry though.  I used to have a cleaner come in once a week, but I found myself cleaning before she got here, so that was redundant, and then of course, the money became tighter and tighter... so no more cleaner. 

My thoughts and prayers go out to all friends and family in Japan.. my disability seems like a non-issue compared to what they have to go through.  I don't know how I would handle this type of disaster(s) that they have had.  I can only imagine if you have no energy, or have walking issues due to MS (or any other similar disease) or even vertigo, how on earth would you be able to get up and RUN... 

Please keep them in your thoughts and hearts.

IF MY BODY WERE A CAR...

If my body were a car, this is the time I would be thinking about trading it in for a newer model.  I've got bumps and dents and scratches in my finish and my paint job is getting a little dull ... But that's not the worst of it.

My headlights are out of focus and it's especially hard to see things up close.

My traction is not as graceful as it once was. I slip and slide and skid and bump into things even in the best of weather.

My whitewalls are stained with varicose veins.

It takes me hours to reach my maximum speed. My fuel rate burns inefficiently.

But here's the worst of it --

 

Almost every time I sneeze, cough or sputter - either my radiator leaks or my exhaust backfires!

Patients like me website

Join Me on PatientsLikeMe!

Come join me on PatientsLikeMe, a community of patients, caregivers, doctors, and other friends all sharing information to help make a difference in the lives of people with MS.
Want to see your treatments, symptoms, and quality of life over time instantly translated into helpful charts and timelines? Want to see what medications are being prescribed for other patients like you? Want to connect with other patients experiencing similar symptoms?
By joining me, you can do all of this. Share your experiences, find patients just like you, and learn from others.


Join me at PatientsLikeMe:
http://www.patientslikeme.com


You can view my profile at:
http://www.patientslikeme.com/members/view/luvbug622

MRI done right, read wrong

I saw a post on a site today regarding someone's MRI not showing the normal spots of MS.  I wanted to reply to the question but was unable to, so I decided to write about it here for anyone that is interested.  When I had my first MRI, it was read as normal, no abnormalities.  One week later another MRI was done and three spots were found.  I had it done at the same location so I asked "how can that be, in one week I have three spots."  I demanded an explanation and sat with the radiologist who compared both MRI's with me.  I even saw for myself, they weren't on the first one but they were there a week later.  He fiddled with some buttons to darken the picture of the first MRI and OOPS..... there were the spots.  I obviously advised that I was not paying for a 2nd MRI when the 1st was their fault.  Anyway, the radiologist and the doctor that ordered the 2nd MRI did tell me that it was possibly MS.  I had no idea what MS was at that point and luckily managed to get an appointment with the MAYO CLINIC within the first month of being told that it could be MS.  Obviously, as soon as I found out (and before my MAYO CLINIC visit) I went right to the internet and did my research as to what MS was.  I find a very helpful site that had a chart listing all the symptoms which I printed off and went through line by line.  Out of the 10 most popular symptoms, I had 9 of them.  So I was all prepared for my trip to Mayo.  I had both sets of MRI's, all my medical records from the past 20 years (long story as to why I had them, but I did) and my chart showing that I had 9/10 symptoms.  The doctor met with my husband and I for a long time and seemed very nice.  He did the tests that I've found all neurologists do when testing for MS, reviewed my chart showing which symptoms I knew of and then he looked at the MRIs.  After looking at them he opined that it was not MS.  The lesions on my brain were not consistent with MS.  He did admit that I had a lot of the symptoms (deafness, vertigo, memory loss, balance issues, forgetfulness etc..) but told me again it was not MS but would send the MRI's to the radiologist on staff to review.  When I got the report from them a couple of weeks later, he again opined that it was not MS.  OK so if it wasn't MS what the hell was it.  Now I find a local neurologist who I disliked from the first time I met him.  His only concern was who was paying for the two sets of MRI's.  He couldn't understand any insurance company paying for them.  I told him that was not my concern and I wanted to know what I did have.  He said it would take a few months to find out what I had because he would need to do a lot of tests.  Needless to say, I left his office knowing I was not going back.  I went back to my regular GP who provided me another name of a neurologist (the biggest in the area) and I made an appointment to see him.  Of course at the first appointment, he was very kind and friendly, doing all the same physical exams I'd had at MAYO, reviewed the MRIs and he also said, you don't have MS.  Even though you have many of the symptoms of MS, this MRI is not in line with other MRI's.  After I saw him a few times he told me there was nothing he could do for me (he would not order a lumbar puncture even though I asked).  He referred me to an infectious disease doctor to try to find out what was wrong with me.  Long story short, the infectious disease doctor did his usual tests and DID order a lumbar puncture.  After the results came back, he told me I was all clear as far as any infectious diseases and really need to go back to the neurologist but wouldn't tell me why.  So, again I made an appointment for the neurologist, taking my blood work with me and he reviewed the part about the ocinological bands (there were 10 or 12) and he said, oh, you have MS.  Just like that.  I got pretty angry at that point and I'd had it with this doctor, no apology, nothing.  I said, so what does that mean and his reply was in doctor language.  Due to me being angry I asked him to tell me in plain English what could happen to me... his comment:  You may never walk again.  I burst into tears (I was in his office by myself, no family member with me).  He went right on to start talking about treatment plans but my mind was not there, I just wanted to get out of his office.  So from the first diagnosis from the radiologist to the neurologist's diagnosis after a lumbar puncture, was four months.  I guess MRI's don't lie, it's just the person reading it.  So, if the person that asked the original question about her doctor saying her MRI does not look like MS, keep going.... you know the answers.

Airport Security Solution

Not feeling that great today.  Don't know what I've got or what I'm getting, but everything aches.  It's been a blah day here in Florida today, it doesn't know whether to rain or not.  At least the rain will make the grass grow again and am kind of wishing for a ton of rain to fill up the lake.  I live on a lake that is now empty.  This is the second time it's happened in the five years I have lived here.  It's not really a "lake", it's more of a huge hole in the ground but there are about 15 homes around the lake.  I love sitting out there watching the squirrels and the birds.  We also get sandhill cranes and ducks and my husband always has food for all of them.  There can be a new loaf of bread in the kitchen and he asks me if it is stale....he always throws out our leftovers for whoever wants it.  I must tell you though, our dogs are the best fed dogs you will find.  They are better fed than my children ever were LOL.  I cook chicken for them three times a week and it is so cute to watch them wake up when they "smell what's cooking."  Dogs are truly man/woman's best friend.  Well I hope whoever is reading this has a great rest of the weekend and will write again next week. 

Hair Loss and MS

I'm still not sure if my hair loss is due to MS or is my thyroid medicine still screwed up.  I have read on some sites that the hair loss is to do with MS and others adamantly say no. Well, for right now, I will have to wait and see because it is too expensive to go to the doctor's for more blood work.  Counting the days till July 1, 2011 for Medicare to kick in, as long as the government doesn't go broke in the meantime.  If you have the same problem with hair loss, please leave me a comment as I'm really frustrated.

Kindness

Maybe it's just me, but it is very hard to find "kindness" in this day and age.  I cannot comprehend what we did before the internet came along, but thanks to the internet I have found lost friends, found new ones and have even found strangers that are willing to help.  FIRST, thanks go to Steven who I found on a Photoshop forum.  He perfected the picture you see at the top of this screen.  I had it where it didn't really line up and being the perfectionist that I am, I wanted it to look perfect.  He went above and beyond to help this stranger.  SECOND, to my "followers."  It feels great to have people following me on my blog, whether I make sense or not, I know that somebody, somewhere is reading me (LOL).  Last night I got a tweet about a car chase on USTREAM and spent three hours watching the stupid thing, but  I 'met' two very nice people (Donut and TyJuanOn).  Whether it was their names, or just our conversations, we seemed to hit it off.  I, for one, am very thankful for the internet. Finally, I want to thank my husband... I have always been independent, never let anyone do anything for me, but because of this disease, he is there for me always.  To all the people I know, and those I am about to know, thank you.  There are KIND people out there.

New Studies Show the MS Drugs Don’t Slow Progression

I found this article and found it very interesting about the MS Drugs being prescribed...

 

New Studies Show the MS Drugs Don’t Slow Progression

by DIRECT-MS on Wednesday, October 6, 2010 at 12:24pm

New Studies Show the MS Drugs Don’t Slow Progression

Ashton Embry, July 7, 2010

Five years ago, I wrote a New Pathways column on the value of the commonly used, CRAB drugs (Copaxone, Rebif, Avonex, Betaseron) for MS. It was based on published evaluations by the Cochrane Collaboration, an organization which is free from drug company influence. Based on their objective analyses, my unavoidable conclusion was that “the available data on the effectiveness of the MS drugs indicates that there is very little evidence that the interferons do much good and that there is no evidence at all that Copaxone has any value.”

Not surprisingly, this conclusion did not sit well with many people who were taking the drugs and it was completely ignored (as were the Cochrane analyses) by the neurologists who over the past 5 years have kept prescribing the drugs as fast as they can. The annual revenues from MS drugs is approaching the 10 billion dollar mark, much to the satisfaction of both the drug companies that produce them and the neurologists and MS societies that receive substantial financial and in-kind benefits from those drug companies.

I must note that, in my 2005 article, I did add the caveat “that future proper studies and honest presentations of them may one day show these drugs have some value”. The good news is that we now have three, completely independent studies which look at the value of the CRAB drugs for slowing disability progression over the long term.

I must emphasize that the only true measure of the effectiveness of an MS drug is how well it can slow MS progression. Unfortunately, because MS develops very slowly, it takes years before the effectiveness of a drug can be properly assessed and hence it is only now that we have some good data on whether or not the CRABs are effective or not.

The clinical trials which tested the drugs and led to their approval were only two years in duration and it was impossible to determine if the drugs had an effect on disability progression over such a short time interval. Instead, the researchers used relapse rate and MRI-detected, lesion development to evaluate drug effectiveness. It was simply assumed these two variables were valid “proxies” for disease progression although the researchers had no hard evidence to support such an assumption.

Notably, subsequent studies have shown that neither of the applied proxy measures correlate to disability progression so it appears that the drugs were approved on erroneous assumptions. Because of these false assumptions, the clinical trial data for the CRABs do not tell us if the drugs have any real effectiveness or if they are no better than proverbial snake oil.

To find out if the CRABs are actually better than snake oil, we must look at the results of the three aforementioned studies which directly examine the question of the effectiveness of the CRABs for slowing the accumulation of disability. The Boggild et al (2009) study compared the disability progression of over 3000 British MS patients who started receiving the CRAB drugs in 2002 versus the established natural progression of untreated patients.

This study was done to determine if the British National Health Service was getting acceptable value for the high cost of the drugs. The main finding of this study is “The outcomes so far obtained in the pre-specified primary analysis suggest a lack of delay in disease progression for all disease modifying treatments”. In fact it was found that “Disease progression was worse than that in the untreated control group” although it must be noted that there was not a statistically significant difference between the two groups.

A recently published study done in Nova Scotia, Canada (Veugelers et al, 2009) looked at the effectiveness of the CRABs on the basis of data from 1752 patients. This was accomplished by examining the time it took to reach disability level EDSS 6 (requires a cane) for both untreated patients and those on one of the CRABs. They found it took untreated persons 14.4 years with a 95% confidence interval of 12-17.4 years whereas the treated patients were estimated to reach EDSS 6 at 18.6 years with a 95% confidence interval of 15.9-21.9 years.

The authors trumpeted these findings as proof the CRABS actually slowed progression but unfortunately they seem to have missed the meaning of confidence intervals for statistical findings. Because the 95% confidence intervals of the two findings overlap, this means there is no real statistical difference between the two results and thus their data really demonstrate  that the drugs have no statistically significant effect on progression.

The third study by Ebers et al (in press) very nicely complements the other two studies in that it compares the current clinical outcomes of the persons who got betaseron during the original betaseron trial done 16 years ago (181 subjects) with the persons who were on placebo in the same trial (79 subjects). The basic finding was “No differences in outcome between original randomization groups could be discerned using standard disability measures”.

Looking deeper into the data, we see findings such as everyone got to EDSS 6 by about the same time, 12.8 – 16.1 years. This finding is important because these values agree very closely with those of the Veugelers et al study. Also of importance is the finding that 38.6% of untreated patients (those on betaseron for less than 10% of the time) reached EDSS 6 within the past 16 years. This compares with 35.7% of treated patients (those on betaseron for over 80% of the time) reaching EDSS 6 in the same time interval. Once again no significant statistical difference was detected so we can say with some confidence that using betaseron for 16 years will not decrease your chances of declining to EDSS 6 within that time period.

Because the results of any single study can always be questioned, given imperfections in design and data collection, it is important that we now have three independent studies which look at the effectiveness of the CRABs in slightly different ways. Notably, all three studies robustly show that the CRABs have no statistically significant effect on the long term progression of disability.

Given the same result from three different and quite rigorous studies, there now is no reasonable doubt that the CRABs don’t work. Thus we can say the CRABs are really no different than snake oil. I realize this must be somewhat discouraging for many persons with MS who were hoping the drugs would slow their decline. However, at least we now know the drugs do not slow decline and persons with MS can make a rational, science-based decision on their use.

It is also hard to ignore the fact that the neurologists who have been unreservedly prescribing drugs that clearly don’t work are the same ones who now are warning their patients not to address an established, serious pathological problem which is commonly associated with MS - impaired venous drainage from the brain. What makes this even worse is the fact the angioplasty treatment, which can safely and effectively resolve the problem and which has resulted in very obvious, beneficial effects (often spectacular) for almost every one of the 1500+ people who have had it done, is being withheld from persons with MS.

To me, something has gone terribly wrong in how persons with MS are being treated by neurologists. Ineffective drugs are being pushed and a potentially very helpful treatment is being suppressed and denigrated. I suspect when the smoke eventually clears and rationality returns, it will be found that monetary factors rather than health concerns are behind this ugly and unacceptable situation.

References
Boggild M, Palace J, Barton P, Ben-Shlomo Y, Bregenzer T, Dobson C, Gray R.,
Multiple sclerosis risk sharing scheme: two year results of clinical cohort study with historical comparator. BMJ. 2009, 9 pages.

Ebers, G, Traboulsee A, Li D, et al., Analysis of clinical outcomes according to original treatment groups 16 years after the pivotal IFNB-1b trial.  J Neurol Neurosurg Psychiatry, in press, 6 pages.

Veugelers PJ, Fisk JD, Brown MG, Stadnyk K, Sketris IS, Murray TJ, Bhan V.,
Disease progression among multiple sclerosis patients before and during a disease-modifying drug program: a longitudinal population-based evaluation. Mult Scler. 2009 Nov;15(11):1286-94.

Share

Can I do it.... I DID IT

It wasn't easy, but I walked around the block.  It felt pretty good but this morning my body didn't like it.  My goal was to try to walk the dog every day, but unless this pounding headache goes away, there will be no dog walking today.

Can I do it....

I bought a harness and a leash and now it’s time to go for a walk.  I’m not worried about my dog making it around the block, it’s me I’m worried about.  Can I do it?  Will it be too much?  Will I regret it tomorrow?  All unanswered questions.  I’m already looking for excuses not to go… like it’s 80 degrees outside, what if any of the neighbors want to talk to me (heaven forbid) what happens if I get stuck halfway around the block.  Well, I guess I will never know unless I TRY… so, at some point today, when I get over all the excuses, I AM GOING TO TRY.  Wish me luck

Another sleepless night

My nights are becoming longer and longer....It is 4:30am and I am wide awake again... some will say "so what" you don't have to be anywhere so you can sleep during the day but that's not the issue.  One doctor says I have sleep apnea, another doctor says it's my thyroid, my husband says it's too much coffee (I say it's stress)... I'm sure they're all correct, but it's not consistent.  It isn't every night that I can't sleep.  I may go a couple of months without having problems, and then BOOM, out of nowhere - here I am writing on my blog in the middle of the night.  I can't make too much noise as it will wake my husband, although he sleeps like a baby.  Oh well, he should be getting up for work soon, so I will have company for about an hour LOL.  I had so many plans for today too, I was going to try and sweep and clean the floor (major accomplishment for me), but it looks like it will have to wait another day.  Well, I will now go and have my third cup of coffee and watch the news.... enjoy your day.

All thumbs - MS or not?

My newest ailment is the fact that I'm all thumbs.... literally.  It started with the left thumb, kind of felt odd when bending it, like it was double jointed.  Now it just stays in the locked position until the middle of the night when somehow it bends and then locks up.  And now the right thumb is the same way.  Of course I am in the waiting period for my Medicare to kick in, so going to the doctor is not an option, at least until July, which is when Medicare should kick in.  I still don't understand why the government acknowledges that you are disabled, provides you with a monthly income, but you still have to wait two years and six months in order to get medical care.   So for those 29 months, my health gradually deteriorates more than before diagnosis.  I don't understand the government and their idiosyncrasies.  Well, at least I have a couple more months to go before I do the battery of doctor's tests.    Will still get my medication mailed from Canada, where it is at least affordable for now.


I think it's time for the air conditioning and no more heat (thank goodness).  Although now comes the hardest time of the year for anyone with MS.... the blaring heat of the summer, and here in Florida, it's no exception.  I often ask myself "why me", but I am extremely grateful that at least I am mobile at the moment, my neighbor has MS and has to use a wheelchair to get around.  (I only use one at Disney :))  I miss not being able to work, but I know it's useless, the minute I start to get dressed, I'm already pooped, and ready for a nap.  Instead of speaking the wrong words, now I am typing a word out of nowhere.... while typing the word "moment" above, I typed it as time-being.  It is very strange when the brain gets wacky.... although it is my favorite excuse.... Sorry.. I have a wacky brain.... okay all, enjoy your day.....

Chit Chat and stuff

Decided to make this page a chit-chat one. Where you can come and read about lots of different stuff, get a laugh or just post a comment. Topics will vary and you can chime in at any time.

In the News: Did you hear about the group lottery winner that didn't win, while all the rest of the group did - interesting reading - what would you do?

http://www.orlandosentinel.com/news/local/breakingnews/os-lk-villages-lawsuit-20110220,0,1687914.story


Joke of the Day:

The Robbers..... (A True Story)

For anyone who didn't see the episode of David Letterman's show where this story was told, read this: (And remember it's a true story...)


On a recent weekend in Atlantic City , a woman won a bucketful of quarters at a slot machine. She took a break from the slots for dinner with her husband in the hotel dining room. But first she wanted to stash the quarters in her room. 'I'll be right back and we'll go to eat' she told her husband and carried the coin-laden bucket to the elevator. As she was about to walk into the elevator she noticed two men already aboard. Both were black. One of them was very tall and had an intimidating figure. The woman froze. Her first thought was: 'These two are going to rob me.' Her next thought was: 'Don't be a bigot; they look like perfectly nice gentlemen.' But racial stereotypes are powerful, and fear immobilized her.

Avoiding eye contact, she turned around stiffly and faced the elevator doors as they closed. A second passed, and then another second, and then another. Her fear increased! The elevator didn't move. Panic consumed her. 'My God' she thought, I'm trapped and about to be robbed!

Her heart plummeted. Perspiration poured from every pore. Then one of the men said, 'Hit the floor.' Instinct told her to do what they told her. The bucket of quarters flew upwards as she threw out her arms and collapsed on the elevator floor. A shower of coins rained down on her.

'Take my money and spare me', she prayed. More seconds passed. She heard one of the men say politely, 'Ma'am, if you'll just tell us what floor you're going to, we'll push the button.' The one who said it had a little trouble getting the words out. He was trying mightily to hold in a belly laugh. The woman lifted her head and looked up at the two men. They reached down to help her up.

Confused, she struggled to her feet. 'When I told my friend here to hit the floor,' said the average sized one, I meant that he should hit the elevator button for our floor. I didn't mean for you to hit the floor, ma'am.' He spoke genially. He bit his lip. It was obvious he was having a hard time not laughing.

The woman thought: 'My God, what a spectacle I've made of myself.' She was too humiliated to speak. The three of them gathered up the strewn quarters and refilled her bucket. When the elevator arrived at her floor they then insisted on walking her to her room. She seemed a little unsteady on her feet, and they were afraid she might not make it down the corridor.

At her door they bid her a good evening. As she slipped into her room she could hear them roaring with laughter as they walked back to the elevator. The woman brushed herself off. She pulled herself together and went downstairs for dinner with her husband. The next morning flowers were delivered to her room; a dozen roses. Attached to EACH rose was a crisp one hundred-dollar bill. The card said: 'Thanks for the best laugh we've had in years.




It was signed: Eddie Murphy & Michael Jordan.