The Brain....What a wonder!

I'm getting ready for another MRI scan of my brain and neck next week. I have always been good about obtaining copies of my records. And this is a *tip* Always get copies of anything you have done. The problem if you don't is they will have nothing to compare your results with, which could be very helpful to the doctor who is trying to diagnose your situation. In my situation, I have rarely gone to the same place twice. I've gone to Visalia, Fresno and Hanford. The site I'm going to on Monday is completely different than any of the ones before. Some machines are sort of open, some are coffin like! That is not important right now, what is important is GET COPIES OF YOUR INFORMATION!

What I've listed here are some of the copies of my last MRI which was done in 2006. My doctor wants to see what has been going on. It's just lately the neuropathic/neurogenic pain (pain that arises from nerve dysfunction and not as a result of injury e.g. Trigeminal Neuralgia) has been bad so she prescribed Neurontin. After reading the side effects, I was concerned. But the drive to be able to sit on an airplane for hours in order to get from here (California) to Florida without having to endure excruciating pain, made me say...go for it! I am very HAPPY to say this drug has truly changed my life. I'm quick to say, I am not healed. But it helps tremendously with the nerve pain that I am in constantly! I can say, it pretty much takes it away! I think I could have an increased dose because I notice when it wears off. I will talk to her about that at my next appointment. I am very happy to say I have absolutely NO side effects from this medication. I am not sleepy, not anything. Just positive results! YEAH! Finally! I take 300 mg 2x a day. (for anyone who is reading and is asking that question)

Anyway, these are some more shots of my last MRI. (I am thinking the white dots are not suppose to be there)

I'm not a doctor, so I don't try and understand what I see.

The report says this:

"there are at least 8 foci of abnormal focal signal hyperintensity in the deep white matter tracts of the right and left centrum semiovale and corona radiata most of these lesions were present on the previous examination, but a 9mm lesion in the right corona radiata is new or increased n size since the comparison study. None of these lesions demonstrate contrast enhancement. No associated mass effect."

It goes on to state "Impression: Multiple abnormal lesions in the deep white matter tracts of the right and left cerebral hemispheres, compatible with a demyelinating process and consistent with the patient's history of multiple sclerosis. Most of the lesions are unchanged since May 2003 examination, however one lesion in the deep white matter tracts of the right cerebral hemisphere is increased in size or new since the prior study."

What does all of that mean? My doctor said the additional or bigger lesion could be because the equipment was better than the previous one. So basically there was little/no big change. When that MRI was done I had been off Betaseron and on LDN for about 6 months. I am excited to see what the new MRI shows. I'm not sure when I will have the results. Probably in the next couple of weeks!

Thanks for reading!

M.S. Update...

It's been a while since I did a M.S. update, or LDN Update, so here it is. Last weekend we went to family camp. I did something there I never dared to do or even try before (at least not since M.S.). I got in a row boat to fish! It was very hot on the lake and they made you wear a life vest. If I wasn't a role model, I would have taken it off. I mean...I can swim and it isn't the ocean or anything. I wanted to take it off because the added heat is not so great for my M.S. But I dutifully kept it on-mostly because I didn't want the lifeguard to yell at me! The point here is that I was able to get in the boat! (not so pretty getting in or out but I was able to do it!) So, I'm proud of myself!

As far as MS goes. Everything is about the same. I do have bad spacisity (which makes getting into the boat a big milestone!). I so far have not found anything to work. I have talked about it before, you can read by clicking here. It is hard for me to sit for extended periods of time and my legs become numb. I have Tizanidine for this but it makes me so sleepy and my eyes so dry that I really hate using it. I decided to try ibuprofen at a 800mg dosage. And I was amazed that it helped! I thought I found my answer! I'll just take ibuprofen and I will be able to sit like other people. Then on Sunday Fox News had a story about how long term ibuprofen use is linked to strokes and heart attack. That's just great! I can't explain how bummed out I was. Years ago I took Vioxx and Bextra and they worked wonderfully. But then they were taken off the market for the same thing. So, now I am at square zero. What I love about the Fox News report is that they say doctors are now thinking opioids are safer for long term use. I'm thinking....right, like a doctor in my area wants to do that! I can't take that with LDN anyway so I guess I have to struggle along. So now I'm not sure what to do. I go to my neurologist this week so I hope she will have some ideas for me. I found out last visit the reason I can't adjust to temperature changes is from the damage in my brain. I can't seem to go from hot to cold. I get cold under the air-conditioner and hot outside. I know I drive my husband crazy, first I'm hot then I'm cold.

Another thing was the refilling of my LDN. I usually use a pharmacy in Florida. This time when I called they said they can't send to California. I was under the impression that their license had run out or was not renewed for some reason. So, we called another pharmacy in New York and they said "you're in California? We can't ship to California". Apparently there has been some change in the law! Are you kidding me? What's up with that? We found a great pharmacy here in California that knows how to compound the LDN. So if you need a recommendation for a pharmacy located in California -McGuff Compounding Pharmacy is your bet. They got the LDN to me quickly and seems to be fine. I never did find out what law had changed or what the big deal was, but I'm happy to have the medication for the next year. One day at a time, I guess.

As far as LDN goes, I have had no new areas of attack or any serious attacks. I have the spacisity, which is my major problem. I'm so happy to have switched from Betaseron. Do I wish my legs were not cold and numb while sitting? YES, of coarse but I understand that I have a disease and that is the way it goes.

We are planning a trip to Disneyworld at the end of September. Whattt??? I'm hoping knowing I can do it! I may need to embrace the wheelchair.
All in all, a favorable report. Thanks for reading!

LDN Update

I've now been on LDN for 3 1/2 years. I am completely amazed at how my world did not fall apart when I stopped the Betaseron! I'm doing much better off the Betaseron than I did on it. I have never had a new attack, like I did when I was on Betaseron.

For example, I have been having a lot of foot numbness in both feet. I decided to go to a podiatrist yesterday and was happy to learn my problems are not circulation related! I was worried about this because my mom had to have a by-pass surgery in her legs at about my age. He said the problem is neuro-muscular. Since I walk in on my arches he gave me some inserts to see if it helps with the pain and numbness. (nerves in my feet are pinched) I appreciated that he is trying this method before he goes to the more expensive insert (personal ones made just for my feet). It seems to help a little, but I guess I need to wait a month or so to see for sure.

So, as far as M.S. and the LDN, I'd doing great! My neurologist thinks I am doing great and says I should keep doing whatever I am doing.

All in all I feel the switch to LDN is the best decision I have made in my 15 years of M.S. I have never looked back and I think everyone with a disease that LDN can help should think about trying it. As my doctor says...it can't hurt you and might help. I'm here to say it does help and I am so happy it does!

(Why did I put that picture? It seems like you should always have a picture with the post!) ;-/

LDN Update!

If you have been following my blog, then you know I have Multiple Sclerosis. I was diagnosed in 1996 after my first symptoms in 1989. It took that long to diagnose me because like most people with M.S., my symptoms were vague and there wasn't a definitive test to diagnose the disease. After I had a pretty severe bout with Optic Neuritis and several M.R.I's and Neurologist, I was diagnosed with M.S.

Since then I have pretty much lived my life. After the initial shock of a life long disease diagnosis, I decided that I felt the same that day as I did the day before so I wasn't going to let the disease get me!

Over the past 20 years I have done various things to deal with the disease. You can click the links to see my opinions on the different treatments I did.

For the past 3 years I have left the conventional treatment for M.S and have been on a treatment called LDN. (Low Dose Naltrexone) Frankly, I am amazed at how wonderful I feel and how it has virtually halted the progression of the disease. I still have M.S. I still have problems where I have nerve damage. I still have a hard time in the heat and if I get stressed. But all in all I feel great. I have had no new relapses since stopping the Betaseron. I took Betaseron for 5 years and in the last year I had another term of Optic Neuritis but in the opposite eye. I was knowledgeable to notice the signs and get to the hospital right a way and start a steroid drip. This greatly improved the recovery time. That was when I decided to stop the Betaseron. While on LDN, I have never had a new area attacked.

In our area it is cool now and I do much better in the cooler weather. I am managing my stiffness and muscle pain with aspirin and Aleve(not together). I've tried the different stiffness M.S. medications like Tizanidine and they make me so dry (eyes, nose) that I can hardly stand it. Plus they make me sleepy. I also take Provigil for the fatigue, which is very helpful.

All in all, it has been a wonderful year. We went to Disneyland about 4 times and I used a wheel chair the beginning of the year (first trip) because I think I may have broken my foot. Somehow I feel wrong on it and couldn't put weight on it. It seemed to be a stress fracture and healed after about 6 weeks. The other times I was able to walk the whole time, which is usually 3 or 4 days, pretty much all day. (estimated 6 miles a day)

So as far as M.S. goes and LDN I would never take anything else to treat this disease. Maybe if they came up with a cure but until then I do not regret switching from Betaseron (the accepted treatment) to LDN (the experimental one). Thanks for reading and e-mail any questions or leave them in the commet section and I will be happy to answer!

There was a wedding, there was a trip-LDN update!

A few weeks ago we received a surprise wedding invitation for Gene's brother. Unfortunately, Gene had already accepted a speaking engagement at a Church in Tehachapi. We decided we had just enough time to do the church service then get to the wedding. The wedding was in San Bernardino which was 2+ hours from where we were in Tehachapi. We told our daughter that we were going to go and being the sensible gal she is she said "let's go to Disneyland for a couple of days after!" I love Disneyland, but we don't usually go in the summer. In recent years I have always had to use a wheelchair when it is anywhere near summer. But, when you have a granddaughter who can deny her a trip to DL?

I'll spare you the suspense, NO WHEELCHAIR! It was hot (but not 100 degrees hot). I am so happy, I didn't have to use the dreaded chair! I walked and walked. I was amazed. I am not sure why I could do it and frankly I don't care. I struggled with the crowds and had an amazing time.

I quit the Betaseron about 2 1/2 years ago along with starting LDN and I have never looked back! This was the best trip ever! Yes, I was tired. Yes, I wish I was younger, but I really felt M.S. wasn't a big deal this time. (maybe age, but not the M.S.)

I only wish we could have stayed longer and visited with friends. Maybe I will have another trip like this!

Here are some pics of our time!

Gene and his brothers!

No wedding would be complete without the cutest girl in the world! (or at least the cutest hair do!)

Here we are at our hotel, Paradise Pier!

The first thing I saw were these amazing balloons! I LOVE them! They light up! Whoever thought of this is amazing! They even......wait for it.....have an on off switch! WHOA! Of coarse I bought one!

We got there in time to watch the fireworks show. I was really amazed Dumbo!

I think it was the best firework show ever!

The next day was fun but the best thing was watching CJ. She squealed in delight in Small World waving at the characters as if they were alive. Everyone around watched her and smiled! There is nothing like sheer delight and wonder of Disneyland!

Whoever came up with this idea, was a genius! All the kids played and screamed every time the water squirted up. (in bugs land-California Adventure) Even the cast member got into the act and screamed!

I don't think I ever noticed the light house really lights up!

The vulture (?) was on! I don't remember seeing it working in recent years! (Jungle Cruise Queue)

We are all 4 in this picture! Do you see us? (quite a hard shot, since it was moving!)

Spent lots of time trying to get a shot in the reflection!

Believe it or not this was Gene and CJ's Toy Story Mania score! Can you believe a 3 year old got 14,400?

We had Premium seating for the Electrical Parade!

And for Fantasmic. I couldn't believe it, but the "viewing area" for Fantasmic became "closed".


We made our stop at Snow White's wishing well! It even had water in it! (last few times I was there it was waterless and stinky!)

Can't resist the occasional light photo!

It is always so sad when you have to leave! Good bye Disneyland!