Jul 192012
 

I guess not based on how much I had to pay for Rebif, just worthless in efficacy in preventing long term disease progression. What I do like is that they used all records of people on the drugs and those off and compared results. Overall it was a fairly large study and can be repeated elsewhere. In the minimum it does not bode well for the Interferon users for MS.

I liked this quote: “Researchers are quick to point out that this is just one measure of these disease modifying drugs and there is still potentially significant benefit to patients.” Maybe I am missing something. I thought one of the key purposes of taking the drugs is to prevent disease progression. I certainly did not enjoy taking a shot, and would not consider it a benefit. I did not enjoy the site reactions. I did not enjoy the side effects. What else is left? I was even tested for Rebif antibodies because Rebif was not working that well at controlling lesions. Now we may know why! 😉 Now I wonder why did did these drugs ever make it to market? Will the FDA just rubber stamp anything?

I am in the wrong business. I need some seed money to start a drug company. Obviously the drug does not have to be that safe or even work to get approved. I am thinking about sweet tasting pills like M&Ms but medicinal. 😉

Apr 112012
 

No. Well maybe, but I would not know because I have never played Angry Birds. If it does I am willing to give it a try. Regardless I read this article about computers boosting brain power and thought they were not investigating anything new. Today the computers are helping our brains while beating us at Jeopardy and Chess so tomorrow they will rule the world. Well I welcome my computer overlords.

I was having a conversation recently with someone who was having memory issues and the doctor said it is gone forever you and only maintain. I told him I did not believe that, but you must exercise your brain. No one likes memory problems (unless you could selectively forget 😉 ). You can mitigate memory issues by keeping notes etc. but there is a limit. I do not think the computer training are the solution. I think they used in the computer study the same thing I told him. You must exercise your brain and that is all the computers did. Sitting around all day watching TV or surfing the Internet is not exercising your brain. Worse than that I think some TV shows and some Internet sites actively destroy your brain. Read good books, play board/card games, etc. There are thousands of fun ways to exercise your brain. Do not blame everything on age or disease. Some memory issues may be the result of watching too much “reality TV”.

Apr 062012
 

Teva is rushing to get an oral MS drug to market, and their drug is about as effective as a sugar pill. Today I read an article, although a little old, taking the stand that Laquinimod is an effective oral treatment for Multiple Sclerosis. I think the author is a shill and it was basically a paid advertisement. On the other hand Laquinimod while probably being a very expensive sugar pill will hopefully be a lot safer than Gilenya. I have no doubt that Gilenya is effective, but it may kill you in the process. Laquinimod sounds like a drug you can feel safe taking.

Also, I am apparently in the wrong business if you can sell sugar pills to people at exorbitant prices to make them feel better.

Apr 042012
 

As I have been reading all the stories lately about the growing lotto jackpot size, and ultimately went up to $500 million I thought it was worth discussing. I have played the lotto in the past and no surprise lost the lotto. I knew going in that I was going to lose, but it was only $1. I wanted some images to go with this post and I had some unredeemed lotto scratch offs that I received as a gift so I “reinvested” those into the lottery. I met a guy in line and we briefly discussed the lottery, and he commented that people who play the lottery are bad at math. I have thought that for a while. He also said that if he had won the big lotto he would have bought all the pants in the world; so we could all be pantless? I was glad he lost and was wearing pants; sometimes it is the small blessing you never even knew about! I told him other than being bad at math I think people play the lotto out of desperation and hope. In the end rather than being a “poor tax” or a “bad at math tax” it is probably a “desperation tax”. Sad.

MS has mostly been a frustration for me unlike many other people who have it much worse. On the other hand I think people play the lotto with their MS treatments too. I think the treatments themselves become a source of hope. At least I am doing something. I remember feeling that way when I started Rebif that it would stop the progression, and the disappointment when it was not working well. I quit Rebif because it did not work and it was a disappointment. As critical as I am of Tysabri I would probably be giving it a try if I was steadily declining. It is possible that I would consider taking Tysabri even if I tested positive for anti-JCV antibodies. Unlike the lotto with MS drugs you stand a much better chance of something happening (and much like lotto winners always go bankrupt MS medication can help get you to bankruptcy). It is sad that desperation sometimes drives our decisions.

Apr 022012
 

I was talking to Eriksgirl the other day about doing the MS walk this year. We have been out of the loop for a while and it would be nice to do it again. Plus we could pick up some swag. As it turns out we are a little late making our plans and our schedule conflicts. We will have to plan for next year.

Today, following on the heels of that, I got the annual MS 150 fundraiser email from my coworker. Please send a donation his way. I remember talking to him about his MS ride not long after my diagnosis. Wow, how time flies. I noticed, from his email, that this is his fourth year as Ride Marshal, the same length of time since my diagnosis with Lyme. Maybe someday I will do the 150 too, but again it will not be this year. Kudos to Chris!

Mar 242012
 

I have posted a few times before about marijuana. I came across this article the other day, and the example they used was the need for weed for MS tremors. Twice a day!  Before she was trapped at home and now suddenly she is free.  The whole story sounds implausible. Maybe the hit in the evening is because her tremors are keeping her awake? In the end this is exactly why I mostly do not support medical marijuana. There are ample prescription medications available to treat tremors. She is taking marijuana because she wants to take marijuana, and now she is just another pot head. To be fair this could just be another horribly written article that left out lots of information.  In the end I think most people using “medical marijuana” do not need it, and it is an abuse of the system.

As to the linked article I see no problem with their being additional restrictions on those who take highly controlled substances. I spent months not being able to drive after each seizure to prove that I was stable. If she, and the others, are in that bad of shape than they should probably not be driving. Or if they are not that bad choose a normal medication. Or take the bus.

Mar 202012
 

I write about urinary issues, and then I suddenly get stuck with one. This is an extremely rare problem for me. For me it manifests in one of two ways. This time, and the most common of the two, is urgency when there should not be any urgency. Making it worse the urgency is while I am sleeping, and not during the day. So lately I am getting up two or three times during the course of 6.5 hours of sleep to revisit the bathroom. I suspect this is related to the house being about 10° Fahrenheit warmer. This has happened at similar periods where I was getting to warm. I will either adjust or wait it out.  Of course this type has a name: nocturia.  Maybe I should do a little more investigating on nocturia.

The other bladder issue is that I have had difficulty emptying my bladder (this has only happened a couple of times). When I was having this type it was worse in the morning; probably because I am always warm from sleeping under too many covers. Along those same lines it was also worse when I got hot.

For both types I never took any treatment and eventually the problem went away; usually within about a month or two.

As I just went to the NMMS site it says that bladder dysfunction occurs in 80% of people with MS. Very disappointed I could not be in the 20% that missed that problem.  I try to follow good urinary habits, but I do not know what can be done to help overcome nocturia.  Maybe I will look up solutions.

Mar 142012
 

Could be a fetish. Does that help?

Moving on I came across two webcasts on “intimacy” while having Multiple Sclerosis. Not that it matters but the order I listened to them was Intimacy and MS: Keeping Your Relationship Strong and then Let’s Talk About Sex. The first one was definitely the better one but overall they both covered the same things. Here are my thoughts.

These webcasts can really apply to any disorder and really just apply to sex in general. There are certainly some things specific to MS, but one of the takeaways from this was that not everything is MS. Just because you have MS does not mean that is the cause of your problem. I think they gave a perfect example of it is not MS in the second webcast.

The big one, and no surprise, is to communicate with your loved one. If you are having any issues or things that need adjusting than obviously that is something you need to work on together. Is anything more intimate than sex? There seemed to be a recurring theme of impotence and bladder dysfunction in both webcasts. To be fair one person’s bladder dysfunction is Tiger Woods fetish. Bottom line communicate with your loved one your issues and desires so you can work as a team.

The other big thing that I would hope is common sense but was a major theme is take something (e.g. Medication, Sexual Aids/toys) to work with physical problems. So we have already connected with our love one above, but that does not automatically fix the physical issues. If you have erectile dysfunction than take some medicine, do not give up on sex. I liked the example in the webcast where the guy gave up on sex because of the erectile dysfunction without explanation, his wife felt rejected, and it led to an affair. Switching sexes there was a lot of focus on females who have lost a significant amount of sensation and have trouble reaching orgasm. They discussed that with reduced sensation it is nothing personal to the male, but it may take something extra, like a vibrator, to achieve an orgasm. (In the webcast the recommendation was for a high power vibrator if you are having decreased sensation. If this is really your first vibrator do you really need to start out with D cells or AC power? 😉

I need to sidetrack for a moment. In the webcast the doctor was bemoaning that all the sex drugs are for men (Viagra, Cialis, etc.) and that there is no Viagra for women. I am curious what Viagra for women would accomplish. For men it overcomes a physical problem. What physical problem do women want solved? Vaginal dryness is something a lot of women suffer after menopause, as well as other times, and there are lotions for that. If it is libido men battle that too and have to take hormones. I can’t see women wanting to take a pill for increased vaginal blood flow, but Viagra may help with that. What would female Viagra accomplish?

It always seems like it is the male that is the example of doing something wrong. No exception this time. A male said he had no problem getting an erection while masturbating, but had trouble when having sex with his wife. This is a perfect example of MS is not causing your problems. On the other hand, excuse the pun, he has some serious sexual problems since he would rather have sex with his hand. This is actually not that uncommon of a problem and they are seeing an increasing number of college age men with the same problem. Too much porn. So I would lay money he is addicted to his hand and photo shopped images of women. If you are addicted to a lie reality is a lot less fun. I am looking at the hand there and it is not doing much for me; probably not helping is that it is not my hand, and I am not left handed. 🙂 Good ‘ol Rosey; always available and always faithful. 🙂

Bottom line two things to take away. First and foremost communicate with your loved one about everything and definitely about sex and your desires and issues. Secondly, if there are problems look for the tools that will help with that specific issue. Finally it does not matter whether MS is causing the impotence, bladder dysfunction, or lack of vaginal sensitivity just get the tools you need to help with the situation.

Mar 092012
 

Well not quite, but the current research says that pregnancy prevents MS. With our four little kids running around the house and wreaking havoc apparently that was very good for Eriksgirl. I liked this quote from the article “Researchers say they aren’t sure what it is about pregnancy that may be protective, but they have some theories.” My contention has always been that pickles and ice cream is disgusting, but maybe that and not the pregnancy have good, healing properties. I will not be testing my theory out on myself.  Any volunteers for the pickles and ice cream study?  -it is open label and you get ice cream!

So the bottom line is if you combine pregnancy, I mean pickles and ice cream, with the blood of a young virgin than you have some great tools to fight MS.

Feb 242012
 

Astrology: the study that assumes and attempts to interpret the influence of the heavenly bodies on human affairs. (Other than solar flares causing problems with orbiting satellites that ends up interrupting communication I am not a believer in Astrology.)

I get a lot of emails related to the blog. Lately it has been about selling stuff (probably worthy of its own post), but then there was a break when I got an email from Ron Stewart. He wanted to discuss his theory that neurological diseases are caused by the movements of the Sun and Moon. Ron noted we are entering one of those extreme points now and people with MS can expect a significant exacerbation.

The flare ups are mathematically connected to early gestation with the same algorithm which describes the lunar EXTREME points of perigee and apogee of the moon. ( time each year when the moon is closest/furthest to Earth) which is the same algorithm which describes the movement of the Sun to EXTREME barycenter points. ( that is , at those points the Sun is furthest from the center of gravity of the Solar System.)

We are entering such a point now, with several peaks in sight, notably the first week of March through at least the first week of May and probably until the end of the year.

If you do not understand the quote do not feel bad, neither do I. At first it sounded like simple Astrology (if it is ever simple) and being born a Leo or Taurus can be hard with Multiple Sclerosis, but then he started talking about birth year. If birth year is important that sounds more like the Chinese Zodiac, and in the end who really wants to be the monkey or the pig.

From the beginning Ron had asked for my date of birth for research purposes. I had ignored that request, but when I requested permission to post a transcript of the emails he would only agree if I gave him my birth date. I denied because that was too much information, and he replied “They, ( you) are also tending to paranoia. What in the world do you think I could do with your D.O.B? In fact, if I wanted to exert the effort, I could have it in short order. ( I don’t and I won’t).” (They in this context was the left brained people, not the traditional right and left brained this is something new)

To those still reading I do not know what the bad signs are (e.g. Leo, Taurus, Monkey, or Snake) but I hope you were not born under one. After posting this I will email Ron so he can comment. Maybe you can get him to do a reading for you to see if you were born under a bad star, or moon (as I have the CCR song going through my head).