Thinking Of Intrathecal Methotrexate, Screened In Porch

So I've been doing some reading about intrathecal methotrexate for the treatment of progressive forms of multiple sclerosis? Since I'm lucky enough to have joined the progressive club I probably should look into it, don't you think? I already tried mitoxantrone, so another trip to the oncology center is no big deal, gets me out of the house! They need to change the description of how it's administered, lumbar puncture, sounds so gruesome! Maybe call it lumbar introduction, hello lumbar! Sounds like something you'd read on an autopsy, victim suffered from a lumbar puncture. Stay tuned, I may be starting a new adventure?

I think I want a small screened in porch off of my bedroom, not to entertain, just to go sit? A place to escape to where I can feel the breeze, but not have to deal with the bugs. Nothing fancy or big, just a place to sit and plan my overthrow of the world. Room for 2 chairs and a table, figured I'd let the wife come out with me too. Oh, I am so planning an overthrow!

Snakes On A Ramp, Better Living Through Chemistry

So I saw yesterday my friend Kim had a snake on her ramp. What are the chances the wife would come home and find one on ours? She called me from the driveway asking what she should do? I told to use the front door, good advice, right? I should have asked the brother to build a snake proof ramp! Thanks to Kim for sending her snake mojo to Baltimore!

The pain doc gave me a medicine refill over the phone yesterday, thought that was awfully nice. He knows the month supply of 90 Oxycodon usually lasts 3 or 4 months, so he was comfortable doing it. Got the script filled and it was for 240 pills! I think they are going overboard with this whole "lets keep you comfortable" gig? Not complaining I guess, just tired of depending on pharmaceuticals to feel quasi normal. 

IVIG Was Disappointing, Bathroom Urgency Worsening

Well I did the IVIG and I'm still here!  Nothing to the therapy, just time consuming.  What are my thoughts you say? Well not sure how to answer that one?  Didn't get sick, really not one of the side effects.  What I got was extremely weak, spent the next week in bed.  The strength came back, or my version of it at least, but that was it.  No benefits that I've been able to discern, but I knew it was a long shot going in.  Imagine how scared I was when I couldn't get out of bed that first week?

The one thing that has held on is urgency with the bathroom.  It's not a continence issue, yet, more a matter of I've lost the luxury of that feeling of, hey, I'm going to need to use the bathroom soon.  I'm doing my own version of the 50 yard dash!  Like any race, you don't always win, hard to come to grips with, but it is what it is.  Needless to say this makes me want to stay close to home, or to be more precise, stay home all together.  Did I mention I'm not digging this reality?

MS Treatment Redux, Social Media Makes My Head Explode

The medicine for the leg pain I'm taking is called Gabapentin, it's the generic for Neurontin, have to say, so far so good.  Let's face it, the pain is never going to go away, but if this stuff can make it manageable I'm in!  Also have rethought the IVIG therapy.  The neuro called the other day and urged me to do it, said the bad side effects date back to when the blood supply was untested, so I'm going to give it a whirl, can't live forever, right?

Trying to figure out the usefulness of social media, think I may be more suited to reading?  I have a Facebook, Twitter and Pinterest account, but it tends to get on my nerves more than it informs me and makes me think, wow, that was interesting.  It be nice if it was chock full of original content, more pictures of folks and interesting tidbits from their lives, less "shares" of someecards with quippy sayings.  I can only take so many pictures of kittens with "smile" attached to them, or 25 ways to fry an egg!

Neurology Visit A Bust, And A Visit To The Sisters

Had my doctor's appointment yesterday, went about as expected. Nothing you try, with the exception of Tysabri, and I test positive for the antibody that makes that dangerous. They prescribed Neurontin for the pain in my legs, and suggested IVIG, Intravenous immunoglobulin. Not crazy about the side effects associated with the IVIG, anything from hepatitis to Aids. The only good part of the day was I got to ride in a wheelchair that made me feel like the little boy, this thing was huge! I am 6'5", 250 lbs, and as you can see I had room for a date in this chair.

Getting ready to go down to the sisters for a visit, looking forward to it, but it the same time apprehensive. They live on the water and are very active people, and do all the things that I love to do, but no longer enable to. I know they will understand that I'm not able to do it, but that will make it no less hard on me wanting to get out there and play. I hope the wife adheres to our agreement that she will go and partake in the festivities, not making it doubly hard that I feel bad because she misses it too.

MS Drug Gilenya A Bust, Skating Show Weekend Has Arrived

Started two months ago taking the new drug Gilenya, a drug design for relapsing remitting forms of multiple sclerosis.  I really didn't anticipate getting any benefit from the drug, but decided to give it a try anyway. Turns out my status as boy genius is still intact, I saw no benefits at all. The plan is to stop the drug as soon as possible, have to make an appointment to go in and be "monitored", like I was when I first started it. In this case monitor means sitting in a room by myself for six hours and having them come in once an hour and take my blood pressure. Seems like a waste of a day, but I will do what I need to do.

Big weekend at the old Brawn house, the daughters skating show starts tonight. This is the first year that she is the big enchilada, running the whole show, and boy is she excited!  She and her mother are actually skating together in an alumni number, which I can't wait to see.  This is the culmination of months of hard work, and years of waiting to be the head honcho. The mother and I are very proud of her. Also, the boyfriend is very involved, and I am the voice of the master of ceremonies again this year, which I think is year number 25?

More Insurance Battles, MS Beat Me On Church Garden

Got my insurance straitened out, if I had medicare part B! Got all new EOB's that said Cigna was paying the "supplemental" portion of the bills, medicare part B would cover the rest. WHAAA? Called them right away, the very nice young girl told me, well that's not right! Waiting for the 15 day period to run for new EOB's to see what's next. In the meantime I had to go to the emergency room, turned my ankle and thought I broke my wrist on the ensuing fall? Just add it to the bill!

Not sure how the church garden went this year? We got a ton of cucumbers, chard and tomatoes, but the weeds have taken over. People are telling me it was great for the first year, but I'm judging it off of what it could have been. It's hard when you have what you think is a great idea but can't work it to fruition like you would have when you were still a viable human. Having a spell where I really miss the old Andy!

MS Ate My Right Hand, And Home Surgery Was A Huge Success

Coming to grips with how fast the right hand is becoming nothing more than a fancy paperweight. Coming to grips, damn, I'm funny even when I don't try! The dead feeling is spreading the same way the tingling spread. I remember thinking when that started to spread from one finger to the next, this ain't so bad. This ain't the same thing. I changed the mouse buttons months ago, index finger died first, so now I use my middle finger. Next three all went together, taking both my mouse operation finger, and one of my favorite means of communication!

Did some home surgery the other day, when you hear this one, well you're just going to laugh! I inherited my grandfather's hanging skin tags, lucky me. The luck part is they are in places that don't show. Had the brilliant idea to take care of one all by myself, show some initiative. Heard from boyhood that country folk would tie string around them, they wither, fall off in a few days. Nu-uh. Mine grew, engulfed with blood, and began to fester!

Father's day evening, around midnight, I hit it, started to bleed. I know, same thing I thought, time to cut it off. I gathered my supplies, went up into the bathroom, and on the third try, sliced it off! Not too, too painful, but it was a bleeder! Turns out it probably need a stitch or 2, but I didn't have any catgut, so I just lather on a thick coat of Neosporin and clogged the whole damn thing up. No infection, no bill, no waiting, done is done. The wife made me promise I'd let the doctor take care of the next one.

Illegal Chicken Farmer, Market Cornered On Polyethylene Glycol

I've decided to go ahead and get 3 chickens, thumb my nose at the man, go off the grid, eat the omelet of freedom! I want chickens, the county won't answer my questions about other things, I'll just play dumb if there's a complaint, and I'm just the man to do it. Have to build a chicken tractor for my little egg factories to live in, refuse to spend hundreds of dollars for $35 worth of materials. By the time the county does something I'll be on my way to Mexico, I will not be taken alive!

On a lighter note, had to switch medical insurance, have Cigna now, so I also change mail order pharmacy. Everything is pretty much the same, so far at least. One thing that was a pain, had to get all new prescriptions for the mounds of meds I take. One of said meds is polyethylene glycol, 1 capful once a day. Here is the funny part, told ya it was lighter, the script got screwed up somewhere, 1 capful TWICE a day was ordered! Got 6 of the huge bottles of powder in the mail, and they accidently sent 2! I have more polyethylene glycol than the constipation ward at the local mental hospital! I have to let them know I'm set for a while, I already don't have enough to read for the amount I have on hand.

Multiple Sclerosis Won Over Baclofen

Baclofen was a total bust, it worked too well. For a few months now I haven't had any, or least not many of the cycling cramps in my arms and legs. It has been wonderful, not sure if it did anything for my back, but we will see. My second go round with this particular drug, same result this turn. It got rid of the spasticity for sure, but with that gone, so went the usefulness of certain parts of my body. Right hand had become nothing more than a closed fist weight at the end of my arm, and don't even ask about my legs! Almost weened off the Baclofen, Tramadol is next.

Baclofen Has Made My Right Hand Useless, I Think?

So who knows the skinny on Baclofen? It's been doing an incredible job with the cramps and pain in my legs, very happy about that. I took Baclofen years ago, didn't like how it relaxed my legs at the time. It did the same thing this time, but I stuck with it, increased the dose, and have adjusted. What caught me off guard was what it did to my right hand, the same thing it did to my legs. Can't brush my teeth right now with the right hand, use a comb, scissors, cut meat, or even write. I'm hoping I will be able to rehab the hand, get some use out of it again. Tough when the trade of for not being in agony is lose of use, but I'm thinking it's pretty worth it at this point.

Pathfinders for Autism Event and Family

Went to a fundraiser for autism last night called Pathfinders for Autism, very nice affair. Met a couple of my cousins, and 2 sets of aunt and uncles, so it was a win win. My cousins one son has Asperger's Syndrome so it was nice to go support them in their fight, plus it was great seeing everyone. Stopped by today to spend a little more time with the aunt and uncles, even got a bushel of crabs and a head of elephant garlic in the deal. Like always the best part was getting to enjoy good times with good people.

Baclofen and Tramadol For Treating Multiple Sclerosis

Let us speak of drugs. Been taking Baclofen for a few weeks now, up to 30 milligrams a day, seems to be helping with both my legs and back. Taking a new non narcotic pain med too, Tramadol I think it's called, that's working pretty good too. The Baclofen was better this time, took it in the past, thought I knew what weak was back then, funny actually. The cramps are so much better, that cycle of cramps that comes rolling in about dinner time, hoping they stay away. Don't know what will happen, but I'll take a few days of less pain.

Baclofen For Multiple Sclerosis Spasticity and Back Pain

Went down to Sinai hospital, had my meeting with the rehabilitation dude, don't know what type of doctor he was, but I liked him. We talked about the progression of the MS, the back surgery, and in my limbs. He came blowing in the room, back to us, thought to myself, this isn't going to end well, but it did. He did a thorough job, answered all of our questions, gave us something to do at least. I will be starting a low dose of Baclofen, increasing it until it's right for me, he thinks it will help everything. we will discuss long term pain medicine next time, not sure about that, fingers crossed the fen, that's what I call it now, will make a dent.

Is Interferon Beta-1b For Secondary Progressive Multiple Sclerosis?

Having a hard time figuring out if Novantrone is the same as Interferon beta-1b? I see on the National MS page they're not, but I thought I took them all. Beta-1b says it's for SPMS, I think? Has anyone been told it's for SPMS? I can see I need to get back on top of my terms and figure out what I have again, it's the only to be informed enough to ask questions. For now I'm off to have another MRI, thoracic spine this time.

Pharmacy Won't Pay For Cymbalta Unless I Pay Double CoPay

So my mail order pharmacy calls today, it's the pharmacist himself no less. Been having a bit of a go round over my nutsy-leg cramp medicine, Cymbalta. Doctor wants me to take 90 mg, pharmacist says 60 mg is the highest dose past titration, they will not pay for higher dose, and it is not recommended. They will however let me take a 60 mg and a 30mg pill each day providing I pay 2 co-pays. Whaaaa? It gets safer the more money I spend? Time to call the doctor again, oh joy!

Great Friends, Insurance Runaround, and Visiting Family

Nice day today, even though I was feeling a little off. The wife went to church without me today, I stayed in bed. The minister asked for me by name, it's like I was called out for detention! We had people over for dinner, I was absolutely no help at all. The wife make a killer meal, all from scratch, and I sat and caught up with 2 dear friends, so all in all a good day. Oh yeah, got a picture of my hummingbird, but not a great one yet, but I got him.



Go tomorrow to the doctors, have to have my nutsy pills straightened out. I take 90 mg of Cymbalta once a day, but the insurance company says the therapeutic dose is only 60 mg. My doc is out for back surgery so I have to see her partner for him to write a justification letter to the insurance company. Either way you look at it I have to pay my copay for the insurance company to be happy. For me to be happy I'm going to have the partner check me out from head to toe. If I gots to pay for it, it going to gets me moneys worth!

We go on a trip this coming weekend, visiting family up in New Hampshire and Massachusetts. Spending a couple days with the wife's family first, a couple aunts and an uncle and all her cousins, always a nice trip. Swing back down to my aunt and uncle and cousins, also always a nice trip. It's nice to get away, though will pay the price for being out amongst the humans, but hey, you only live one, you have to see the things and people that make you feel good.

Schilling Family Book Signing, and MS Medication Dance

Went to my first book signing tonight, my cousin and her husband wrote a book about the journey their family is going through having a child with Asperger's Syndrome, The Best Kind of Different: Our Family's Journey with Asperger's Syndrome
Shonda Schilling, Curt Schilling. It was great to see them, the aunt and uncle, the whole gang, even a local cousin. Everyone was in line, taking pictures, asking them to sign the book, pretty cool. I couldn't resist, I asked the cousins husband to sign a crossword puzzle book, he threw the pen at me. Can you say lawsuit? Always good to see family, wish her brother had been there, would have made it perfect.

The neuro said yes to the oral Prednisone, no to the DDAVP, both things are the reason I've been with him since 1986. He will tell me his honest assessment of the situation, or more importantly, tell me if he doesn't know, I like that. Anne, you were right, going to stop the taper at 10 mg a day, 5 in the am, 5 in the early pm, just like you thought. He also thought the DDAVP was a bit much, wants me to see a urologist about that part. Trying my best to take it slow, but still live the life, baby steps, literally.

The Girl Aced Midterms, I Went Bird Feeder Shopping, and Oral Prednisone and DDAVP Naval Spray

The girl had a great week, got "A"s on all her midterms. The one literature class, a comparison of the different types of Shakespearean plays was magnificent. They had to choose 3 quotes from 2 different plays, explain and interpret them. I read the entire test, a 7 page essay covering the subjects and characters, was able say, oh, OK a few times. She's wicked smart, finally on the right path in school, and I love her very much! A "B" would have gotten she's an OK kid.

I was out in the world today, it was awesome! I drove, stopped and got an iced tea, waved at someone I didn't even know. Ended up down a my friend Joe's parent's house, wanted to check out their bird feeders. Every time I've been there birds have been everywhere. His mother told me it was all about the feeder, the food and the placement. She was sitting with her back to the window, telling me hers were squirrel proof, squirrels were not able to get the feed. Didn't have the heart to tell her there were 2 squirrels going to town, eating the feed! I told Joe, if my backyard doesn't look like a Hitchcock movie by 9 am, your mother owes me $32.50!

Find out tomorrow what my prednisone dose is going to be, looks like the neuro is going to go along for it. I'm feeling pretty good, really good actually would like it to continue. Also want to find out about the use of DDAVP Nasal Spray, something to help with my frequent urination. I had tried Flomax, but my prostates fine thank you! I'll let you know.

Multiple Sclerosis and Steroids, and Back Surgery Still Working

Finished my IV, went great, now trying to figure out what to do next. I have a phone consult with my neuro, a face to face sometime in April. I want to continue with the steroids, orally, and I don't want to wait. The neuro has been pretty good with things, and if not, the primary has been awesome. Keep your fingers crossed, I could use the help.

The back surgery went great, for now the pain is gone, so I need to keep doing what I need to. It's a lot of sitting right now I'm pretty good at that, but this is over the top. Still no bending, no twisting, no anything really. I'm going to stick with it, it's nice to not have the pain shooting down my legs. Horrible feeling, the guy that came to put the IV in, I think may have taken my pain medicine when he left. I'd like to say it was an accident, but I'm not that confident in my fellow man. Had it in the morning, didn't in the afternoon.