Went to see Dr. M yesterday to talk about the solumedrol. He is so much easier to get in front of than the neuro. That said, he is not thinking that is where I want to head just yet and we are talking about Thiamine, Vitamin D, Calcium, and Niacin. Very interesting research he does for me. At any rate, we are going to explore these much like I've done with methyl B12. If they don't have any effects, then we can do the other. I feel much better about this approach. I'm going to try and call Biogen today to see if they have my paperwork yet.
I have a lot of energy today (compared to yesterday) even though I mowed the lawn last night. I did get to bed earlier than normal so I know that has something to do with it, but I'm unsure just how much (it was only an hour).
Julie and I get to have lunch together today (they boys are in music camp) so I'm looking forward to that.
Thursday, July 30, 2009
Sunday, July 26, 2009
Back from Branson
Went for a couple of night this time. We traded some time saying no to a timeshare for the hotel. Easy enough. If we were resort people when we travelled, and had the money of course, it actually looked like a good deal.
Anyway, enough of that. The walking was not bad. The weather cooperated very nicely. It was not too hot and we got a couple of showers that also helped keep it cool(er). At any rate, it was quite a lot of fun. We got to swim in the hotel pool (which the kids always love) and I think that was more tiresome than the walking itself. I had three comments about my walking stick this time and I don't really know how to respond to it (them). Certainly I did not blow them off, but tried to make light of it. It certainly helps more then I can explain in a few seconds, but I don't know exactly how to approach it. Julie and I thought the best answer would be one that may take them off guard and be a bit funny too. I welcome suggestions but we thought it would be great if anyone asks something... "Do you hike?" or "What do you use that for?" I could reply "If I didn't hold it up, it would just fall down and lie there. I can't have that, Can I?" and leave it at that, of course with a grin. Julie and I sure laughed at the thought (perhaps we are the weird ones!).
Back at home is a nice feeling. I can hardly wait to sleep in my own bed.
Anyway, enough of that. The walking was not bad. The weather cooperated very nicely. It was not too hot and we got a couple of showers that also helped keep it cool(er). At any rate, it was quite a lot of fun. We got to swim in the hotel pool (which the kids always love) and I think that was more tiresome than the walking itself. I had three comments about my walking stick this time and I don't really know how to respond to it (them). Certainly I did not blow them off, but tried to make light of it. It certainly helps more then I can explain in a few seconds, but I don't know exactly how to approach it. Julie and I thought the best answer would be one that may take them off guard and be a bit funny too. I welcome suggestions but we thought it would be great if anyone asks something... "Do you hike?" or "What do you use that for?" I could reply "If I didn't hold it up, it would just fall down and lie there. I can't have that, Can I?" and leave it at that, of course with a grin. Julie and I sure laughed at the thought (perhaps we are the weird ones!).
Back at home is a nice feeling. I can hardly wait to sleep in my own bed.
Friday, July 24, 2009
Thursday, July 23, 2009
AdSense
You'll noticed I added AdSense. I hope it doesn't offend anyone to show some ads on here. If you click fine, don't fine. I cannot ask you to do that. Feel free to comment and say 'No Way' and I'll take it down. I'd much rather people keep up with me than be prodded to buy stuff if it bothers them.
Moving the ball
Julie is taking my paperwork by the Dr.'s office today so they can get that signed and faxed to Avonex. Went to bed early last night and caught up on my sleep; feeling pretty good today. Stretching in bed this morning made both legs flop around (instead of just my left). I don't know how long that may have been going on (I don't remember talking about it), but at least now it is documented today.
Wednesday, July 22, 2009
MRI is over
MRI lasted about 45 minutes in the tube. Took a chunk of my afternoon though to get up there and wait and such. Don't get me wrong, they were efficient and very kind, no complaints of any kind. There is just a lot logistically to do: clothing, get the IV line ran (for contrast), paperwork, etc.
I'm no expert at reading the films so I cannot comment on what they look like. I'll call to get a copy of the report in a few days / a week. I didn't get by the Dr.'s office to drop off the last of the Avonex paperwork today so I'll do that tomorrow.
I'm no expert at reading the films so I cannot comment on what they look like. I'll call to get a copy of the report in a few days / a week. I didn't get by the Dr.'s office to drop off the last of the Avonex paperwork today so I'll do that tomorrow.
Early to bed helped
Feeling a bit feisty today. Certainly not as run down. Drinking a ton of water so the IV goes in easy this afternoon for the MRI. I am a bit apprehensive about the results (no more than I think anyone would be). I will be taking my Avonex stuff by the Dr.'s office on my way to the MRI so that ball should get rolling soon. I still have not decided on the Solumedrol treatment. I think that may depend on these results. If there is a lot of activity, it will sway my feelings about it.
Tuesday, July 21, 2009
Very tired today
I don't think it is 'directly' MS related (but it sure does not help). Have been up late the last few nights and having the pager go off through the night for notices and such does not help. Anyway, MRI scheduled for late tomorrow afternoon now (If I already posted that, sorry.) Have my workout with Marsha today because she has plans on my 'normal' day.
Sunday, July 19, 2009
Wicked was great!
Absolutely wonderful! The best story in a musical yet (in my opinion). The production was as good as anything I've seen (on par with the Disney productions and Phantom).
Well as we talk, we are more convinced that Avonex is the right answer. The question is whether or not to take Solumedrol. The benefits seem nice, but oh the side effects during the IV treatments...
Well as we talk, we are more convinced that Avonex is the right answer. The question is whether or not to take Solumedrol. The benefits seem nice, but oh the side effects during the IV treatments...
Friday, July 17, 2009
Heading to Wicked
The kids are spending the night at a friend's house. We are headed to
the PAC to watch Wicked.
the PAC to watch Wicked.
I sent in some forms today to get the ball rolling for Avonex. More to
do next week. Also scheduled an MRI for next Wednesday.
Wednesday, July 15, 2009
Back from the Neuro
Well it seems as though there is a ton to report. I don't really know exactly where to begin, but here it goes. Oh, and I registered mymsfight.com today so you can just go there and you'll get here from now on. :)
I met with Dr. W today and he is VERY nice indeed. He really is the person I needed to go over this with. He was sure of what he was telling me as we talked, very thorough (as he redid most of my first 'sign' tests (some I failed for instance: Hoffman's Sign, Romberg's Sign, Babinski's reflex test, and of course my Visual Evoked Potentials test from last year which, in his words was "Abysmal"), and chose his words carefully so there was no ambiguity because of connotation. All in all a very good exam, and I felt taken care of, not hurried.
He said a few things that really impacted me. One was that as research progresses 'they' are seeing that MS progresses faster and more aggressively in men than women. That is interesting because MS strikes about twice as many women as men. We also can note my changes in symptoms over the last year very effectively. He basically said that I needed to be on a 'commercial treatment', end of story. His delivery though was so different form Dr. D's. His manner brought forth an honest concern for my health, not just a cold factual statement. I wish there was a better way to say that, but I cannot think of one at the moment. He gave me a lot of literature about Avonex, Copaxone, and the possibility of a drug trial.
He is checking with my insurance to get another round of MRIs done so we can compare any visible progression. I do not know how that may or may not effect the starting of any other treatment.
After much discussion, Julie and I have ruled out the trial, mostly because of the chance of placebo, and we just don't think that is a wise risk. We then decided to go with Avonex mainly because of the dosing schedule difference between it and Copaxone. Dr. W said he would reccomend Avonex most but some people fear the longer needles and the higher possibility of side-effects. Both of those don't seem to bother me as much as the daily rather than weekly injections. I get tired of taking my vitamins every day, let alone getting a shot. So once again... Laziness Reins Supreme! I love that. Well, you know. At any rate, there will be plenty of stuff to 'do' as I talk again to him and his staff in the next day or two about what my next steps are. It will be an interesting ride I'm sure.
Please pray for me and Julie; especially Julie.
I met with Dr. W today and he is VERY nice indeed. He really is the person I needed to go over this with. He was sure of what he was telling me as we talked, very thorough (as he redid most of my first 'sign' tests (some I failed for instance: Hoffman's Sign, Romberg's Sign, Babinski's reflex test, and of course my Visual Evoked Potentials test from last year which, in his words was "Abysmal"), and chose his words carefully so there was no ambiguity because of connotation. All in all a very good exam, and I felt taken care of, not hurried.
He said a few things that really impacted me. One was that as research progresses 'they' are seeing that MS progresses faster and more aggressively in men than women. That is interesting because MS strikes about twice as many women as men. We also can note my changes in symptoms over the last year very effectively. He basically said that I needed to be on a 'commercial treatment', end of story. His delivery though was so different form Dr. D's. His manner brought forth an honest concern for my health, not just a cold factual statement. I wish there was a better way to say that, but I cannot think of one at the moment. He gave me a lot of literature about Avonex, Copaxone, and the possibility of a drug trial.
He is checking with my insurance to get another round of MRIs done so we can compare any visible progression. I do not know how that may or may not effect the starting of any other treatment.
After much discussion, Julie and I have ruled out the trial, mostly because of the chance of placebo, and we just don't think that is a wise risk. We then decided to go with Avonex mainly because of the dosing schedule difference between it and Copaxone. Dr. W said he would reccomend Avonex most but some people fear the longer needles and the higher possibility of side-effects. Both of those don't seem to bother me as much as the daily rather than weekly injections. I get tired of taking my vitamins every day, let alone getting a shot. So once again... Laziness Reins Supreme! I love that. Well, you know. At any rate, there will be plenty of stuff to 'do' as I talk again to him and his staff in the next day or two about what my next steps are. It will be an interesting ride I'm sure.
Please pray for me and Julie; especially Julie.
Tuesday, July 14, 2009
Laziness reins supreme!
Well again I am struck by the lazy gene that keeps me from taking time to post. It is ridiculous really as once I get behind then I forget what has been going on. Seeing the obvious flaw in my abilities, I will attempt to reconstruct the last couple of weeks for your viewing pleasure.
We went to the lake for the 4th of July. Spend a lot of time in the pool and that took its toll on me. I was very run down for a number of days after that. I wanted to sleep all of the time but it didn't feel like it was doing any good (frustrating!) when I did nap. I then proceeded to leave my B12 at the lake (I love forgetting things). I reordered the original B12 I bought (they dissolve faster) and got them a few days ago. I also made alarms for my iPhone to remind me to take them so I can get in a good rythm about it.
I have an appointment wiht my new neuro tomorrow (Dr. W) so we'll see how that flies overall. I've noticed a couple of what I would call new symptoms but they have been infrequent as yet so I'm not too sure about it all. My right arm has 'vibrated' a couple of times. It happened when I was lying on my right side with it under my pillow so I have no idea what it may have looked like. It felt like there was a cell phone on vibrate next to it is the best way I can decribe it. It only happened for 10 seconds or so and stopped as soon as I moved it. It may have just been an oddity because of the way I was lying. The other has been my left hand / arm. The involuntary clonus-like twitches tend to make my hand move and they 'feel' they same in that they seem to have a mind and desire of their own and until I can 'make' it stop, it keeps going. The hand / arm pulses are much shallower than the foot ones, but it is very disconcerting. These too have only happened a few times but since they are visible and relatively difficult to stop...it seems like more of a change.
The heat is evil. With temps in the shade over 100F (39C) it saps me quickly. I've been good at staying inside as best I can.
I'll post again tomorrow after meeting with the new doc. Hopefully I'll have my MRI appointments incoming too.
We went to the lake for the 4th of July. Spend a lot of time in the pool and that took its toll on me. I was very run down for a number of days after that. I wanted to sleep all of the time but it didn't feel like it was doing any good (frustrating!) when I did nap. I then proceeded to leave my B12 at the lake (I love forgetting things). I reordered the original B12 I bought (they dissolve faster) and got them a few days ago. I also made alarms for my iPhone to remind me to take them so I can get in a good rythm about it.
I have an appointment wiht my new neuro tomorrow (Dr. W) so we'll see how that flies overall. I've noticed a couple of what I would call new symptoms but they have been infrequent as yet so I'm not too sure about it all. My right arm has 'vibrated' a couple of times. It happened when I was lying on my right side with it under my pillow so I have no idea what it may have looked like. It felt like there was a cell phone on vibrate next to it is the best way I can decribe it. It only happened for 10 seconds or so and stopped as soon as I moved it. It may have just been an oddity because of the way I was lying. The other has been my left hand / arm. The involuntary clonus-like twitches tend to make my hand move and they 'feel' they same in that they seem to have a mind and desire of their own and until I can 'make' it stop, it keeps going. The hand / arm pulses are much shallower than the foot ones, but it is very disconcerting. These too have only happened a few times but since they are visible and relatively difficult to stop...it seems like more of a change.
The heat is evil. With temps in the shade over 100F (39C) it saps me quickly. I've been good at staying inside as best I can.
I'll post again tomorrow after meeting with the new doc. Hopefully I'll have my MRI appointments incoming too.
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