Friday, December 21, 2007

mostly normal

Posting has slowed down a bit as I'm on a bit of a plateau. It's a good thing, not getting worse, not getting better. Currently I'm battling spasticity that is up and down during the day, I simply get stiffer as the day goes on... and as I sit at my desk working. The side of my face is starting to feel a little numb, not any more than during the summer, but it hasn't gone away in the last few days.

I played fairly well in my soccer game last night, I scored two goals and worked hard. Tiredness from playing is easy to deal with, in fact it feels good!

Saturday, November 17, 2007

pharmacies suck

I'm not talking about CVS or Brooks, though they have their issues. I'm talking about specialty pharmacies like the one that is now sending me my Rebif. For some reason my original pharmacy is no longer included in my insurance company's network. Hence, they gave me the number to call the new pharmacy and have them refill my script. As fortune would have it, this has to be done by 11/6 or we'll be charged some sort of nasty price I'm sure.... we received the letter on the 8th.

After a week of calling the pharmacy, their promise to get the prescription filled, and to be in contact with me - no luck. They actually started making excuses about a fax not being signed, or part of it being ineligible. Fine, I can understand that, but don't let it become a full business day's delay, that's unacceptable.

The MS Lifelines program was my savior, after I was unable to get a better delivery date then the next Tuesday (which meant I would miss 2 doses), I called them. The MS Lifelines program is available to people like me with MS who are on Rebif, it is sponsored by the drug company. The fact that the program exists helps to show how challenging the medication is, both in side effects, and insurance issues. After explaining my story, the nurse asked me to hold while she called PrecisionRx. Within 3 minutes the pharmacy was setting up shipment for Saturday.

I took my injection Sat. instead of Fri. and feel a lot more comfortable. Next time obviously I know to let the MS Lifelines folks handle insurance company situations.

Saturday, November 10, 2007

Another tough morning with spasticity

Muscles feeling really tight and sore this morning, had to take a break from cleaning up the closet and recycling old clothes.

More of my legs were tight and sore this morning. Meaning my quads, hamstrings and calves, not just my hamstrings and partially calves. Going onto the eliptical to work my muscles out a bit and then try a prolonged stretching routine.

My PT has moved on to a private practice, so the upcoming week is my last. I know what I need to do to keep flexibility, just have to stay on top of it.

This past Thu. night soccer game went really well considering how I feel today, perhaps it has something to do with it. I'll have to keep note on how exercise makes me feel the day after, this right now is just a bit too sore and tight to be normal... At my game, it was competitive and the team played pretty well, we lost 7-6 but I managed to find the net 3 or 4 times and played well throughout. I really pushed hard at the end and was exhausted, but it felt good. Unlike the week before I wasn't hampered by spasticity or the bruised heel. I seem to be paying for it today.

My thoughts Thu. night were that the Baclofen was doing it's job. I have to take it right now (2pm every day) and hopefully it will kick in a bit now that I need it.

Monday, November 5, 2007

broken needle

Nice. First time I've messed up a syringe. I forgot to uncap it from the autoinjector, pressed it up against my stomach - all psyched up and 'Blonk...' Nothing. Part of me seriously thought, 'Oh cool, I couldn't feel a thing.' Then I realized I had screwed it up.

Great, now I can look forward to another try in 30 min (for the liquid to warm up some)!

Well, I will take a short time to note how I'm doing on the Baclofen. So far, no changes to spasticity, though it hasn't been as bad as last week. I also haven't been physically exerting myself at all. Tomorrow I have PT and it will be the first time I've gone on the day after an injection, when I'm usually feeling tighter.

Oh, and the Baclofen has definitely made me grumpy.

Friday, November 2, 2007

spasticity and drugs

Just starting up the Baclofen, so far, no changes, no side effects. I guess that's a good thing, nothing like an unexpected allergic reaction to spice things up.

My legs tighten up as the day goes on, I don't think my computer desk chair is all that great, in fact, I'm sure it isn't. It actually has two big screws that punch through the cloth cover right into the middle of my hamstrings... Time to upgrade shortly. They're tight walking up hills and stairs right now. It's nothing as bad as the fatigue I was feeling this summer, which would prostrate me in just a few minutes. I thought I should try to quantify how they feel now as I'm just starting the Baclofen.

Spasticity in quads and hamstrings - 4

I'll keep track of how things go from here. About to take 5 minutes to do injection #30! Left upper arm, my arms are the most likely to bleed afterwards, just a little blob, nothing major, and usually don't hurt all that much - famous last words!

Wednesday, October 31, 2007

more drugs

I have been struggling with spasticity in the backs of my legs the past week or so. It's just natural that as I get over the fevers caused by the Rebif that something new crops up. This isn't so bad as far as the spasticity I've felt Before Steroids. My legs are tight, but I don't have balance or walking problems... having to say something like that is pretty difficult, but there it is. My major concern is losing the ability to walk, my Neurologist always listens carefully when I describe any problems with my legs, or balance. But. The good news is that my recovery After Steroids has been remarkable. I only have a bare glimmer of pain/numbness in my toes, only periodic parasthesia in various place, but not in my legs at all.

Kris and I went in for another visit with my Neuro just yesterday. Due to my complaints about stiff legs, even though I'm adhering to the stretching regimen provided by my therapist, was a concern. She proscribed Baclofen to help relieve it. It has not really affected me much, other than discomfort and tighter than normal muscles, particularly my calves and hamstrings. I'll start it at a half 10mg pill per day tomorrow. Some side effects include drowsiness and mood swings - fun!

Monday, October 15, 2007

BLAH!

OK, this is ridiculous I feel so crappy at the moment. I've been sick all weekend with a head cold, fever, completely clogged up nose... And now, I have a fever of 101.2! This is one hour after I took my Advil and one hour BEFORE taking the Rebif, which gives me a fever! Ugh, I don't know what to do for myself tonite, I hope I can have some comfort from the endless drugs...

To top it all off, my injection for tonite goes into my left buttock, it's like salt on the wounds! Wish me luck.

Friday, October 12, 2007

injection day 22

Yes, 22!! Holy crap!

Finishing up the first month of full dosage injections. Many more left, but this was bound to be the hardest due to injection site reactions, flu symptoms. So far, I've only had a couple injection reactions, first in my left leg, then in my left stomach. The stomach one was brutal, I tried using a cold compress because they had been painful recently. It instantly bruised and is just starting to go down after 1.5 weeks. The fevers I feel like I have under control with an Advil regimen before and after and during the next day. I don't necessarily like the idea of taking ibuprofen every day so I plan to follow up with my neuro on any particular side effects are possible with it.

Blood, needles, no problem! But sitting at my table getting ready and facing the reality I have MS three times a week is hard. Especially now, my sumptoms have almost completely subsided. I feel good, healthy and I'm playing great on my indoor team. But I had decided to dig into the Rebif program and I will continue to do so, occasionally I read reminders of the path that MS takes in a lot of people, and steps I can take to minimize and push off those relapses are easy to undertake.

Thursday, October 4, 2007

fevers regularly after injection

That has been the theme of my last week and a half or so. It coincides of course with stepping up to a full dosage. Last Thu. night, I had a fever of 101, I stayed home from my soccer game even though I had really wanted to play, but it was at 10pm and Kris convinced me it was a bad idea. It's odd to have a fever from the injection, because I don't have the normal symptoms that go along with fevers -- no headache, runny nose, cough... But, it does wipe me out a bit, and the fever/chills/sweating is uncomfortable.

Fortunately, advil holds the fever at bay. I've been stubborn a few times and not taken it, as well as skipping it while on a business trip. THAT was a bad idea, I had no thermometer so I don't know what my temp was, but this past Monday was a horrible experience.

First of all, injecting yourself while alone in a hotel room just doesn't feel right, it made me feel lonely, thinking, 'what the hell has gotten me to this point!??' I had no advil left, usually my bag has a bottle, but I hadn't had a fever the previous injection, and was hoping this would go the same. Nope. 3am I woke up with a fever, and over the course of the next 3 hours it wouldn't let up. I was hot, sweaty and nervous. My thoughts were to maybe call an ambulance, my fever felt high. I couldn't go out and get myself Advil either. So, I called the front desk and spoke to a gentlement with broken English. I conveyed the idea that I was sick and needed Advil, he promised he would send someone out to get it - great! I took a coule at 5:30am and put a cold facecloth on my forehead again. By 7:30 I got to sleep.

I managed to get home Wed. night instead of going through this at the hotel again. I had to wait until 11:30pm to do the injection, but that was better than doing it at an airport. That may have left me feeling more detached from normalcy than my hotel-injection experience.

Fast forward to Thu. of this week, soccer day, I look forward to it all week. Drove into the office in the morning to submit my expenses and did a bit of work after getting home. I felt OK, no fever or chills. And it was a great game, I played with more pace than any other night and our team clicked after a rough first half. I was able to score four goals and notch three or so assists. It has probably been more than half a year since I've been able to be that productive, it was really an incredibly good feeling. I had a great strike, a great run through the D, and a couple nice passes, so it was certainly fulfilling.

I got feverish again on the drive home though, and when I took my temp it was 101.4! Kris got home and we checked again 102.2! What the hell is going on! Advil at 8:30 and around 11:00 the fever is gone.

Moral of the story is that I need a fairly regular regimen of Advil for the time being. But who cares, it was a good night of soccer!

Monday, September 17, 2007

injection site reaction

I noticed this morning that on my left thigh I have a small red rash, about the size of two quarters, and below that, some bruising. First I've noticed any injection site reaction.

I've been lethargic in the evenings lately, my back get's progressively sore and tired over the day. My neck get's stiffer and my legs tighten up. I've been battling a cold over the weekend, and to top it all off I actually got a sunburn from being out at the apple orchard all day Sunday.

I'm not looking forward to my injection tonite, since increasing the dosage it's been more painful, and, frankly, I'm just not into the whole stabbing yourself with a needle. Nor am I all that excited by the fact that I'll be doing this for the forseeable future.

I'm sure I'll find a good spot on the left side of my abdomen and hopefully it will be similar to the first couple weeks. I've cancelled a business trip for this week due to feeling under the weather, and the anxiety I have about taking my shots daily. I just feel tired after a regular day, adding in travel is going to be a challenge. Next week, if I'm over the cold, I should be able to handle it.

I've been doing my PT exercises regularly. They include stretching my quads, lower back and hip flexors. I go back on Friday.

Thursday, September 13, 2007

injection day 8

This was the last available spot left for an injection. Back to the abdomen Friday. That was the easiest place after all.

This was a much easier injection than the other leg, I reduced the depth of the injection from step 3 to step 2 and it was much better. It still was a sharp pain, more noticeable than previous injections, but nowhere near as painful as before.

Here's hoping my legs aren't as stiff for my game tomorrow night and PT on Friday is really helpful.

Monday, September 10, 2007

injection 7, symptoms

This was the first time my injection really hurt - and I mean it hurt like someone was seriously putting a big fat needle into my leg. Ouch!!

I rubbed it extra long, this is a double size dosage compared to the first two weeks, and still half of what it will be long term. I hope it's not a sign of things to come...

I'm guessing that I hit a muscle, instead of just under the skin. I'll call my Rebif Nurse tomorrow morning - I tried tonite but they are only open 8-8, a good reason to do my injection before 8 maybe.

I wanted to take a chance to note one thing that has happened twice lately. My left middle finger has gone numb, novacaine-like numb. Once while sitting holding three kids while reading a book at the neighbors, and again while just watching TV. I"ll just have to keep an eye on it. The second is that for the past 4 days or so, I've been getting the chills all the time. For what seems like no apparent reason. People get the chills sometimes, but usually because of a chill, or something that just kinda spooks you out. But this wasn't for one of those reasons as far as I can tell, perhaps because I've been running a little hotter than normal just a little draft could be giving me the chills? Lastly, a few separate times I've felt a numbness on the left side of my face that goes away as quickly as it comes, it's similar to the chill as it just feels skin deep. Don't know if it means anything but I'm still hypersensitive to what my body is saying.

Till next time.

Sunday, September 9, 2007

legs are stiff

The biggest issue I have at the moment is the continued tightness, or spasticity, in my quads. There's one particular muscle in the middle of my quad, seems like it's in between the two big muscles, that is tight. I can't seem to stretch it well enough and it's been affecting my lower back and stomach since I think they are just out of whack due to the tightness.

Tomorrow I'll be moving from 8mcg/2ml up to 22mcg/5ml, or from around 20% to 50% of a normal injection of Rebif. I've had no injection site reactions and have only had short, mild fevers after the injection of about 99.5.

Starting PT on Friday, which I'm very much looking forward to.

Wednesday, September 5, 2007

needles are becoming routine

There was a nice little spot of blood on the end of the needle after my injection today. Since it was mine, it should have been a big deal! Unfortunately, it wasn't. My stomach didn't even quease...

After 5 injections I am still doing pretty good. No injection reactions, just a slight fever that fades quickly after about 30 minutes.

Got a call from PT in Franklin that they have an opening next week, but I'm supposed to go to Philly for a few days. Since I will also be increasing dosage by about triple I may have to reschedule. I talked to my boss today and let him know about my concerns with flying next week, maybe a few weeks out would be better. I'll be in touch with my Rebif Nurse to see if she has any opnions.

Monday, September 3, 2007

injection day 4

No problems with the syringe or anything this time. I did the injection myself to a pretty tough (to reach) area, looks like no injection site reactions again. So far so good as far as those are concerned.

Once again I do feel a bit hot 15 minutes or so after the injection. I probably have another low grade fever like last week when it was 99.4. My body feels a little stiffer now as well, particularly my lower back and upper legs. Same areas that have been bothering the last few weeks. I'm hopeful that PT helps to stretch these muscles out.

Sunday, September 2, 2007

Soccer, injection 3, MS center

Busy week of appointments is at an end. It was replacedby a regular old busy weekend!

I visited the MS center at milford hospotal on Thu., it's a new center started by my neurologist, which is nice, I don't have to drive all over to see a physical therapist, occupational therapist, MS nurse and also my neuro herself. Kris and I went in for the visit which lasted about three hours. I'll be going in for physical therapy starting next week to help with muscle stiffness and spasticity. I'm looking forward to this as my legs and lower back are tight and feel different. They are also harder to stretch out lately.

My Rebif nurse called during the day on friday to see how the injections were going. Pretty good so far, I seem to get a slight fever about a half-hour later, but it's short.

Kristen did my injection in the lower back/butt on the left side. Definitely no injection site reactions so far. I still get nervous for the injection, more so when someone else doesit I think. I go really fast for my self-injections.

Soccer game went well - one goal and even at ten pm I was feeling good. My shot was good, I think I hit the ball harder than in the last six months. Can't wait for the next game and for my physical therapy to start up!

Wednesday, August 29, 2007

injection day 2

I got my injection in as scheduled which was a good thing. I did mess up the steps a little bit though, which is, of course, a bad thing. I removed the needle cap before inserting the syringe in the injector. A drop or two came out as I pressed it to set it into the bottom piece... Other than that, I inject the left side of my abdomen, again barely felt anything, and it seems to have worked out OK. I took some advil beforehand since it did give me a slight fever last time - 99.5. I felt a little warm again this time, but by now it's gone away. Or I could just be feeling sick because the Sox are losing to the Yankees. Again.

(not so) fun day

I don't feel quite so eloquent today, well, not that I'm ever eloquent...

Visited the urologist today. It was a really great visit, I'm not emptying completely and the options are miserable. I'm going back on a med I was using previously that may have had positive results and we'll see. After that, nasty things...

I stopped at the pharmacy because there are two things I think I need to feel comfortable with the needles in the house. One is a safe locked box for the medication in the fridge. Two is a safe, impenetrable disposal for the used needles and syringes. They didn't have any, but a women in line behind me said I could use an empty laundy detergent bottle. She was very helpful and seemed to want to share her experiences. In our brief conversation I learned that she had been on Rebif a few years ago. I didn't wask what her experience was like, I didn't ask her if she had MS, it seemed self-evident. She was a nice looking black woman maybe a few years older than me -- and she was in a wheelchair. I awkwardly excused myself, while a part wanted to stay and talk, a part was running scared at an all-too-real reminder of the seriousness of my diagnosis.

So, I ran home, got an ice cream sunday after dinner and decided I had to post this to get it out of my system.

Monday, August 27, 2007

injection day

The nurse came today and instructed me on using the self-injection kit. Although it was a fairly complicated process, it was easy to master once I had done it twice. She dropped off a 'new' Rebif kit, which addressed the Rebiject 2 and had a DVD instead of a VHS tape... vhs tape!

I started off at 8mg while the normal dose is 44. I'll do 8 for the first two weeks, my syringes are prefilled with the correct dosage which is nice.

So, I have to admit I was a little apprehensive when I had the device on my belly, ready to go. But I did it like I was trained and didn't notice a thing, I couldn't even feel it. And so far, two hours later, no injection site reaction.

Sunday, August 26, 2007

Busy week of ms-related appointments

I start off the week with a visit from an MS Lifelines nurse. She will train me on the self-injection medicine. I did receive my Rebiject which makes the actual injection easier.

Then, back to my urologist for consultation on my uhm, bladder problems.

Finally, both kris and I will spend the afternoon working with specialists at the MS Center at Milford Hospital. This is a chance to talk to physical therapists, councilors and nurse about living with MS for both Kris and myself.

Although it's a busy week I'm looking forward to starting my medicine, though it has side effects nothing else is effective for treating the disease MS.

Friday, August 24, 2007

another good soccer game

It's feeling great to be able to play competitively again. Last night I broke the ice and scored my first goal in months - maybe four months. I ended up with 2 goals and 2 assists in an admittedly lopsided win 10-2 for us. That's the first game we've dominated in months as well and it's a pretty much needed confidence boost for the team. Way to go guys!

My legs felt better this week compared to last week's game. My toes were a bit numb and swollen feeling but to a lesser degree. The spasticity (muscle tightness) was there in my right and left quads, but also to a lesser degree.

Now I'm looking forward to playing every week again and I have something to motivate me through the expected side-effects of the medication I'll be starting on Monday.

Monday, August 20, 2007

class for my medication

The prescription I have for my MS medication, Rebif, works a bit different than usual. Not only is it astoundingly expensive (before insurance), but it requires that I become certified to use the injection kit. A nurse from MS Lifelines contacted me shortly after the pharmacy shipped my kit via fedex. It was shipped overnight in a refrigerated carton (from Fall River of all places). She scheduled me for next Monday for my training class, I expect to start the medication at that time as well.

She is trying to track down the "Rebiject" self-administration kit for me during the week. This web site also states there is a Titration Kit available, I'm supposed to take a gradually increasing dosage, as stated on my prescription on the box, but don't have a kit. I'll have to call their support staff and request the Injector, Titration Kit and Travel Kit.

I hope it all goes well, taking an injection will have to become routine, and managing the side-effects will be yet another challenge.

Thursday, August 16, 2007

Played indoor soccer tonite

Am driving back home after stopping for dinner.

I felt good, I would say about 80% back to normal. There was still some spasticity in my right leg, the numbness in my toes was there, but it didn't get worse like I had worried it might. All in all I was very, very happy with my first game back. It was night and day compared to my play before steroids. I couldn't keep my balance, I couldn't pass, dribble, or shoot, and the worst part is that my brain knew my body wasn't right -- it's hard to explain how it feels to just have your body not responding like normal, how your mind envisions it just before a shot, or a pass.

From a technical perspective, it wasn't my best game, my shot was off, I think it had a bit to do with the tightness in my legs and the general change in muscle tone that I've experienced. Formerly, my leg muscles have been tightly coiled and wiry, now the tone is more relaxed, even my calf muscles aren't as tight as normal. Perhaps that's a good thing, but for now, it is hard to get used to.

I'm looking forward to starting up with a physical therapist who is experienced in treating MS, hopefully someone who can understand my condition and how I'd like to develop more strength and flexibility -- well, who wouldn't, but I think it's an important step to getting back to normal.

Let's see, I had 3 assists or so, I had maybe one or two decent shots on net, and about 4 that I just completely mis-hit. Normally I would expect to convert 2-3 of the chances I had, and mis-hit maybe a couple less. I can't complain though, I was nervous going into the game about how I would feel, and my body didn't let me down this time. It felt almost as natural as usual, and the fatigue was good fatigue. I'll sleep well tonite and enjoy the satisfaction of a successful comeback!

Tuesday, August 14, 2007

more early signs of ms that i missed

I think I've written about this before, but perhaps not. In trying to flesh out my diagnosis I've been trying to recall certain symptoms I've had before, that went away. I had thought of one instance early, and another just a minute ago.

First, when I saw my PCP originally about the numbness in my legs, he had in his notes, another instance of me calling in with numbness in just one of my legs. Interestingly, he had also noted that I was complaining of numb feelings in my chest and face. These relieved themselves on their own.

Secondly, and this is one I just though of, I had a nystagmus in one of my eyes a few years back. This prompted me to see the eye doctor and get a pair of glasses (which I never wear). We had thought that perhaps I was overtired, not all that impossible since I believe Tyler was only a year old.

Both cases resolved on their own.

So, maybe I do have Relapsing-Remitting MS. That is certainly the bracket I want to be in.

Monday, August 13, 2007

Nueurologist visit

This was my first real MS-specific appointment with my neurologist. The main objective would be to discuss medications and get me queued up to start one. As expected, we determined that Rebif was the best choice based on effectiveness. Though, statistcally the differences in effectiveness are minimal. That said, I was expecting to make this choice based on my research. I can just hope now that the month or so of expected flu-like symptoms isn't too bad, and that my body reacts favorably as far as liver and other side effects that might prohibit me from taking the interferon-based medications over the long term. (was thata runon sentence? i think mrs. b. would deduct points on it!)

So starting phase two: medication; on or around August 30th, when I'm scheduled to meet with an MS nurse to get instruction for Kris and I on the thrice per week injection. I was really down a bit before the meeting with my neurologist, but it went smoothly. She did mention, that being a male, my outlook is not expected to be as good as for a female, but there is no use dwelling on it, I'll take the medication as directed and hope for the best.

some frustration is bubbling

As I read more and more of the literature I've become a little apprehensive. My symptoms might be a little more severe than most patients with MS, I'll have to talk to my neurologist about this. I've been reading this article on MS by the National Institute of Neurological Disorders and Stroke.

It says that complete or partial remission occurs in 70 percent of MS patients. I still have parasthesias in my legs and back, some pain in my toes and I still have bladder problems... None of the improvements happened on their own either, it took massive steroids. It's possible I had had an attack years earlier though, and remitted completely, I'll talk about this with my Dr. as well.

It's only been ten days since I finished my steroid infusion, maybe my body is still recovering. I should have a better idea this afternoon.

Saturday, August 11, 2007

Symptoms better, here they are

Wanted to take a moment to jot down my symptoms after spending lots of time with boy monster and mowing (half) the lawn:

.. Some spasticity in both legs, mostly right quad - 3/6
.. Some pins & needles in both feet, toes are sore - 4/7
.. Numb skin both upper legs and lower back, maybe abdomen - 3/6
.. Headache 4

The headache just hasn't really gone away without the (addictive) fericet. The numbers represent my take on how they feel now vs. Before steroids.

The most promising is absence of fatigue and the really bad balance and coordination. I don't miss that... I have yet to test myself with the 'eyes up walk on a straight line' test that I really struggled with. And I haven't tried striking a ball yet. One thing at a time.

Friday, August 10, 2007

back to life

Having this full weekend to recover from vacation, and get settled at home is going to be helpful. It will help to focus on normal routines during the weekend while getting ready for the biggest change in 'routine' in my life.

I'll have to take some sort of medication indefinitely for my MS. For starters it will be one of four periodic injections. From daily to a few times a week. My thought is we will start of Rebif which is a 3x weekly injection. That's easier than daily, but worse than weekly :) I'm such a genius!

Going to spend some time going through research, I should have some sort of idea what to expect from the different treatment programs but I'm very hesitant to start digging into the MS forums because I am certain to run into activists for each, and horror stories for each.

But here goes... I'm joining thisisms.com and will start reading what people are saying.

Thursday, August 9, 2007

Questions for my neurologist

Here's the static document.

Nightmares about needles

I spent the day reading material from pharmaceuticals about the four main treatment options for MS.

Rebif
Copaxone
Betaseron
Avonex

But it gave me nightmares all night and I didn't sleep - bummer.

Wednesday, August 8, 2007

Lobster makes me feel better

And the steroids I'm sure have had a lot to do with it. I enjoyed my busiest day and feel worn-out in the good 'old way. Running on the beach, chasing Tyler, swimming, throwing Tyler in the water, tossin him back and forth with Kris. It was truly a great day. Although my toes cling to a certain numbness I feel better every day. I'm looking forward to starting the treatment so I can continue along this path.

Tuesday, August 7, 2007

finished eeg tests

reminder to self to figure out the names of the three tests.

Ok, here is the information I was looking for on the tests. They are termed, 'Evoked potential tests'.

I have MS

My neurologist told me today that I had MS.

Next.

Monday, August 6, 2007

Just another day at the beach

Even though I'm still battling some steroid side-effects, namely painful itchy knuckles in the morning, and some pain in my toes -- I feel pretty good.

I've gotten a few headaches and taken my headache medicine, and I am taking the Ativan every 6 hours or so, since I'm still on Prednizone and it makes me a bit jumpy.

Hoping to get a good night sleep and that the 'bladder' symptomps of my steroids start to wear off and let me sleep more than two hours straight.

Sunday, August 5, 2007

Starting new blog dedicated to research

Just for me to keep track of things that I can't finish reading or need background material on. Particularly at this point, determing my diagnosis is the clear objective. But I'm not shy about saying that it is MS, however, I have always said, "there are several varieties of MS that are described in the literature... I don't know which one I might have". My first objective is to try to figure that out by at least linking those articles.

MS Research

Chilling at the Cape House

For the first time really. I'm upstairs, figuring out some blog things, learning how to publish pictures from my cameraphone directly to my vacation blog.

http://forestonet.blogspot.com

I feel OK as far as my symptoms, I'm logging those on a Google calendar which is private, I will keep it updated with my symptoms, severity etc for myself and my Dr.

I'm still feeling kinda funky due to the steroids, but sticking to the prescribed meds to make this all as easy as possible. Being able to enjoy going up and down the stairs and actually doing things has been such a positive experience that I'm having a hard time not thinking about things getting worse again.

Heck, one of the worst things this morning was that my toes started to hurt! I usually can't feel them! Going to enjoy lunch and then sit and finish Friday by Robert A. Heinlein.

Saturday, August 4, 2007

How do I feel today?

That's been a good question lately. The Steroid Infusion ended yesterday, and I started to taper with oral Prednizone this morning. I had a headache and took some of the mega-caffeine/acetomenaphine/butrol (sp?) dosage. I'm feeling OK so I coated my stomach with the Prilosec and popped all six Prednizone.

I'm hoping those don't change the way I'm feelin all that much because I feel pretty OK. I walked the whole yard, working with Tyler to water plants around the yard and it was nice. I don't think my normal fatigue hit me, but I do worry about hitting a wall so I'm going to take it slow from here on.

Kris and I are getting assorted tasks complete, such fun as paying bills, cleaning up cat barf and refilling food bowls... We expect to get on the road shortly, it will likely be a long road but I am planning on that. Hopefully by the time we leave Tyler will be ready for a nap, and we can take our time, grab some chow, relax and enjoy some music. Hopefully.

Friday, August 3, 2007

Steroids Day 5

Finally made it to Milford Hospital, it was a long drive. Tyler was struggling in back for the few hours it took to make it there, can't say I blame him. I was struggling with remnants of my gremlin dreams (they were trying to take out my IV last night!), and Kris was battling crazy Cape Cod drivers. We finally arrived, behind schedule, but safe.

The nurses hooked me up in a flash, and in no time I was juiced up on roids, had the IV removed for the last time (at least for this phase) and sent on my way with best wishes. I felt OK, a bit tired, and it was 105 degrees so I was just in the mood for a shower and a nap. Kris was able to get Tyler down so I showered and napped during his naptime.

Woke up feeling refreshed, but a little jittery from all the steroids, so I cooled off with an Ativan to balance myself for the rest of the evening. This juggling of meds and moods is challenging, daunting and foreign.

Going out to dinner tonite with all my friends so that is something to be really excited about!

Steroids day 4

This was a quick and easy infusion. Driving from the cape and back in the same day, I knew, would take it's toll though.

Did some work at the house while I had energy. Watered plants fed cats :).

Drove back to the cape and pushed myself a bit to see how I was feeling. It seemed like I had a bit more energy, I sat at the beach and read got wet up to my knees, no more since I had an IV still. I felt like I was pushing myself but I was restless.

We had a couple huge 4 lb. Steaks that needed cooking so I steped up to make them, it's something I like to do. The bricketts were a challenge since i'm used to gas. With some grilled onions I think they came out great!

Just before dinner though I had a coughing fit from swallowing water wrong and ha an instant, debilitating headache. I took 10 minutes before sitting for dinner with everyone, but I recovered. We hung out on the porch for a while talking and having a good time.

Everyone went to bed and I tried to follow suit. But I had recurring nightmares of gremlins messing with my IV line that prevented me from sleeping well, not to mention reminding me how doped up I was. Gremlins!

I should have remembered to take that Ativan but I was trying to steer clear of more drugs for a change.

Starting the drive back to Milford, it's crazy with boy-monster and traffic. But kris will get me there with sanity leftover.

Wednesday, August 1, 2007

Steroid Infusion Day 3 of 5

Today I was due for (another) new IV, a vial of blood to test my Potassium and Glucose levels from being on steroids. My veins were uncooperative again, the nurse couldn't get it into my right hand, so she warmed up my left and got the IV into my forearm. It's relatively comfortable there as it's stable and doesn't move when I do things with my arm. She pulled a vial of blood and then got the Steroid drip started up at full tilt.

My face was getting flushed but otherwise I felt pretty good. I learned at the end that my first vial wans't going to cut it, they needed to take another, so they came in and grabbed another vial from my fight inside elbow. Cool, stabbed three times when I was expecting one!

Headed home to rest a bit before getting up the strength to head back to the Cape where Tyler and the rest of my family are.

I wrote this as a Thank You to my wife. This hits us all hard, but she has to put it all together and keep Tyler happy and safe, myself happy and safe (and make sure I speak up for my own good), and keep our family informed. That's a lot to ask during this period, this doesn't sum up how grateful I am, maybe I need a Haiku eventually. But it's a start.

THANK YOU KRISTEN

First experience with steroid agitation

Boy that really made it a fun night last night. Instead of getting all ornery and feisty I turned into a brain-addled, overtired mess. I stayed up from 2-5am, couldn't concentrate on sleep, my arms itched, and my brain was running at a million miles an hour. I finally hit upon the cause at 4am. It was the steroids and caffeine finally taking their toll. I took an Ativan and opened up my book. By 5am I had finished the book and sleep came easy. This morning I took my regular Prilosec, breakfast and another Ativan to keep me stable. I'm already feeling a little anxious for my infusion and blood tests today, after the long day yesterday with caffeine injections and the littany of medications, I'm ready for some quiet.

Tuesday, July 31, 2007

Into the ER

The ER is my favorite place! LOL

Went through my history with the ER nurse, who was a little distracted and jumpy. It was hard to summarize things for her. I thought I might be having a bit of 'roid rage', alas, Kris said she was being a bit upity as well. Thanks hon, but if I had had some roid rage that would have been cool too! I could be a little more pushy during my hospital visits to make sure I'm getting all the care and assistance I need, I tend to be a little passive.

So, I got into the room and out of the general chaos that was the waiting room, my headache was only a 3-4 standing and 1-2 sitting. But, it was an 8 during breakfast and a 6 during the infusion. I was seeking long-term relief. The Dr. came in and described the routine. Since my headaches were not 9-10's and they were not continual since Firday; I was not a severe case. I had a spinal headache from the Lumbar Puncture. Which can be serious.

So, IV, saline drip followed by an anti-nausea medication, a souped up Ibuprofen and a big bag of caffeine administered through said IV! An EMT attempted my first, into a vein in my left hand, after basically missing, and then fiddling with it for a bit with the nurse they gave up. Ugh. The nurse came over to my right arm, which is historically better, and set up the needle and tube inside my vein in the blink of an eye. Yay.

I had a bit of a reaction to the anti-nausea; a flushed, feverish feeling in my face and shoulders. So, the nurse, who was a nice guy, added some perscription benadryl and I felt better shortly. I finished the caffeine and talked to the doc. In brief, he said that we were hopefully on the tail end of the spinal headache and this drug panel should be enough, in addition to some rest.

Well, since I'm hopped up on caffeine and watching the Red Sox I won't take up much more of our time here. I've got a prescription for Fioricet to take as needed, and some energy drinks. Phase 3 of the steroid infusion tomorrow and then, hopefully, a restful afternoon and evening down in the cape with all the kids in the family. And light at the end of the tunnel.

Steroid Infusion Day 2 of 5

After the lumbar puncture it was a long ride down to the Cape. I had a headache during much of the trip but didn't think much of it, especially since I've had migraines for 15 years. Unfortunately I had more headaches Sat. and Sun. but tried to take Advil to keep them at bay.

On Monday after driving back up to Milford Hospital with another headache I sat down for the infusion. This wasn't bad, having an IV inserted was unpleasant but ranked low on the scale compared to recent tests. I developed a yucky metallic taste in my mouth but hey, that's nothing, right? My headache continued until I was lying down flat and subsided pretty quickly once I was on my back.

Tuesday we went out for breakfast with Scott, Chrystal and Finley I felt pretty good going in the morning but developed a fierce headache right before breakfast. I wolfed it down, took the Prilosec (which I guess protects your stomach from the steroids) and drove into the Infusion Suite.

Lying down my headache got better pretty quickly and they started the infusion. This time I had no bad side effects other than having to pee 6 times in about 1.5 hours and the headache when I got up. The nurse who assisted in Lumbar Puncture 1 came over to see how I was doing and how the 2nd Lumbar Puncture went. I mentioned to her about my continuing headaches and she stressed that it was really important to call my nuerologist immediately. So, I did that and my neurologist has advised me to get to the ER for relief.

What I will probably have there is a Blood Patch or an IV Caffeinee drip. We'll see, not having a headache would make my overall feeling of well-being increase dramatically. I may even see some improvement of my symptoms from the steroids if I didn't have this headache.

Friday, July 27, 2007

Test with lots of letters

The neuro office advised I would be having another EMG, August 7th. This was the cold war era torture test I blog'd earlier. Fun. I called to preregister for this and the operator found my file and started reading off the tests I was in for. "EEvalskj at 1 EEasdkljasdf at 2 EMwela at 3"

I'm sure they were something more reasonable but that's how it sounded to me. So, great after vacation I can look forward to coming back and having more torture tests! For all I know these could be simple, but I will find out soon enough, and won't think about it for another week at least.

The Lumbar Puncture (take 2)

The mixture of drugs, reduction in stress and my ability to meditate helped make this an easy operation. The radiologist was a tall guy who popped into the room after the nurses and techs did all the prep work. He jabbed me with novacaine, let it sink in, jabbed further, etc. I made it through that fairly well so I was feeling quite optimistic. In my head I repeated the matra, 'cuddle', 'Tyler' and envisioned us curled up on the couch watching Cars the movie for hours.

There was a single pluck on one of my spinal strings that sent a shock down my right foot, but I hardly felt any more after that. A few minutes later the CSF was collected. I got off the bed pretty quick and wondered briefly why this wasn't what we did first! Ugh, no use with train of thought. Sat in the recovery room for about twenty, got home and lied down in bed 3.5 hours. Got up and we're packing for the Cape now. Onward to the next steps.

Ready for take 2

Hope the drugs work, hope they get some fluid from my spine, hope my radiologist is an expert. Wish me luck.

Wednesday, July 25, 2007

Treatment begins Monday

Instead of Friday, as I had previously planned, my treatment will start Monday with steroid IV for five straight days. The Dr. said I could become ornery and I'm relishing that possibility - so lookout! But Kris has drugs to calm me down and is in charge of keeping me stable :).

This unfortunately coincides with our long-planned trip to Cape Cod Vacation, which has become a harbinger of bad times for my family... We'll have to plan many more trips so it that it doesn't feel this way for much longer!

I'll be trying to put together a plan to minimize travel and maximize vacation time. If the treatment is each day at noon, which I'm pretty sure Monday is at noon. It might look something like this:

Mon - Drive up to Milford, infuse the roids, stay overnight in Milford
Tue - Infuse the roids, rest, drive back to the Cape
Wed - Drive to Milford, infuse the roids, stay overnight in Milford
Thu - Infuse the roids, rest, drive back to the Cape
Fri - Drive to Milford, infuse the roids, drive back to the Cape

I dunno, that may be optimistic and we'll play it by ear a bit. But, everyone who has volunteered to be my driver will have to live up to my expectations. Scott, Kris, Dad are you good enough! Maybe Lawrence will have to drive...

The lumbar puncture (take 1)

This morning I had the first attempt to collect cerebrospinal fluid (CSF). I was pretty high anxiety for a number of reasons. I had consciously decided not to research much into this as I'm sure everyone who had a bad experience would post something, and the majority, who didn't, wouldn't say anything. Unfortunately I saw the picture on wikipedia in the Lumbar Puncture page - i guess that didn't help, but it wasn't even all that bad...

Sometimes you are your own worst enemy.

Needless to say, I was stressed going in. I politely declined my Dr's request that a student perform the operation, that was an easy choice. So we got started I studiously examined the floor and the sink while they fiddled with instruments and instructed me to lie on my side. The novacain injection was unpleasant, a prick here or there and the usual pain I have with needles (ie. they say it only pricks, but for me it pricks and keeps it up). A few minutes later we are ready, I'm trying to arch my back, but my muscles are tightening and I can't loosen up enough.

Without gory details I'll just say she tried 3-4 times, both on my side and sitting up, but although she felt she was in the right spot, no fluid was collected. It was unpleasant. (that's dry humor right there)

Onto the next phase. I'll go back Friday for radiology-assisted Lumbar Puncture. They'll use x-rays to get the needles into the right spot. I'll be confident that my radiologist will kick some ass and make it simple.

Tuesday, July 24, 2007

Neurologist after Head MRI

I've talked about the conclusions already and although I glossed over the likelihood of this being MS, it's not something I've glossed over in my thoughts. It's been hard to come to terms with even as a remote possibility, now it is more likely.

I'm lucky to have my wife by my side in all these meetings and tests, she asks the questions sometimes I just ask in my head. Kris has a sharp mind for medical details and takes nothing the neurologist says for granted, I'm really lucky to have her as a counterpoint to my more subdued response.

I will have a lumbar puncture tomorrow, I guess to rule out Lyme Disease and other things. And, I just learned another EMG in the afternoon tomorrow. Then, starting Friday, I will have five days of steroids by IV. Unfortunately they are different than Bonds' steroid program, see the steroid's for MS link. Nonetheless I'll at least do pushups to try to get bigger biceps!

I have done some research into the steroid treatment and other options, what I've taken from it is that different people react in different ways. The blessing and the curse of the internet is that I can read a blog from someone who had an awful experience with the steroid treatment, or even the IV contrast for MRI, and someone who had experienced significant improvement. I imagine this is due to different causes of MS and the different ways it can present itself, so I'm trusting the judgement of my neurologist (she specializes in MS) because she knows the differences better than internet posters.

I feel better after writing up these blogs, I try to carry all this info in my head (and I guess I still do) but putting it down will make explaining the story easier for a whole lot of different audiences: work, friends, teammates and everyone else. And could in the long run be really useful as I discover what my diagnosis will be and my prognosis.

I'll use this to track the steps of my progress and probably even useful research that I discover so that I can also educate everyone on MS and other demyelinating diseases if necessary.

Head MRI

I was very, very anxious ahead of this test for obvious reasons. I was hoping it would be shorter but since I did need a contrast halfway through and I was getting no happy drugs I remained nervous. I almost freaked when they placed a metal (torture) cage around my head, but the tech added a mirror to the top of this which allowed me to see my toes. I read this page about MRIs so that I would be more informed. It's quite confusing, kudos to people who know all this -- Scott!

I was hoping it wouldn't be bad, and it wasn't. The combination of the mirror and the fact that my headphones fit more comfortably seemed to make all the difference. This MRI machine seemed newer, it was also less noisy. I was getting pretty stressed up to the contrast injection, after which I had to pee severely and had to leave the room. This added a bit more time as they had to do a new image map (or something). But, I made it through this with a LOT less trauma than last time.

As before I sent my MRI's to Scott for a preview. I didn't realize till after I had talked to him about the results how difficult it might be to read an MRI of someone close to you when you find something abnormal. Dr.'s cultivate their clinical distance just to deal with these situations, but I think it flies out the window when it's a friend and I admire Scott's courage and willingness to help out in any way he could, I'm very grateful to have heard about the spots in my brain from a trusted friend first.

The MRI showed several "bright spots" in my brain. This is a term used to signify areas of inflammation caused by deteriorating myelin sheath surrounding nerves. You really don't want these, or really anything abnormal in your brain, at least that's the way I look at it. Scott and my neurologist both agree that these are likely evidence of the disease Multiple Sclerosis (MS). However, before she will give a 'diagnosis', my neurologist recommended more tests. I had another eight vials of blood drawn yesterday. I think that makes the grand total around 26 vials across 4 visits in the last 5 weeks and I have yet to feint! Go me!

EMG

The EMG was a test of the nerves in my legs. It consisted of rudimentary torture techniques [sic]and a computer graphing my responses to the pain.

Ok, not quite, but the test included zapping me with an electric current and mapping my response on the machine. This continued for a good 40 minutes and included the test designed to weaken my nerve by continual shocking (torture really isn't a bad way to describe this). Fortunately my nerve was kicking ass and didn't tire -- unfortunately that meant she had to do it several more times!

Then the Dr. came in to see if I had any pain tolerance left, or if I would crack. He did this by inserting a needle attached to the computer into various muscles in my leg while asking me to flex the pierced muscle! That was fun too, next time I will make a game out of it and pretend to be a captured spy in the USSR.

It appears the results of this test were normal.

The MRI (of Doom)

I didn't feel all that apprehensive when I first knew that I was going in to get an MRI. More curious and intruiged by the technology than anything else. I guess I didn't know that I suffered mild claustrophobia...

The technicians noted that it would be a long test since I was due for scans of lumbar and thoracic spine both with and without contrast (injection!). Ok this was awful so I won't get into details. The injection was the least of my problems, claustrophobia had me sweating and irrationally frightened. It was pretty much the 2nd worst experience of my life with the cystoscopy winning by a fairly large margin.

I'm fortunate to have a best friend that is a radiologist so I sent off my scans to him for a preview since my follow-up was a week out. Scott said he did note a cyst but he wasn't all that concerned about it with regard to my symptoms. But it was there, and it wasn't normal, so it was certainly something to think about. The cyst was narrow (iirc) but passed from T5/6-T9. Which means the middle of the fifth and sixth vertebrae to the ninth vertebrae of the Thoracic (middle) of the spine. It was on the inside of the spinal canal, and may be affecting the spinal cord, though that phase of diagnosis seems to have been ruled out.

We had both been expecting to see evidence of a slipped disk, something that would possibly have explained my symptoms while being relatively easy to fix. It unfortunately was not. I spent a few weeks thinking that this could have been the problem after the followup with my neurologist. She noted that it could be the cause as well, but I was going to need an MRI of the head and neck and an EMG.

Seeing the neurologist

The first visit was pretty uneventful. She tested me with a pin pricking my skin as well as a vibrating hammer, which I couldn't really feel on the outside of my knees. My reflexes were very jumpy, more than usual. And she sent me off for bloodwork. Eight vials or so, after the blood tests that my PCP ordered I was getting used to it. She also sent me off for an MRI of the middle and lower spine.

Seeing my PCP

Fortunately my Dr. is very easy to talk to and made it easy for me to describe my symptoms, after doing that he performed an enjoyable test which included stabbing my legs in various places with a needle. Sometimes I noticed the sharpness was dulled. I had no other muscular problems, as he tested my strength, my legs were normal. I still think they had lost some strength, but my legs were already strong so it would have been hard to differentiate.

Now onto another fun side-effect of my symptoms, I have been debating whether I wanted to talk about this on a blog or not, but it's relatively common for my probable diagnosis and there's no reason to be ashamed of it. I have to pee all the time! Seriously, more than usual for those who know me... Fun stuff that is. He recommended I see a Urologist and unfortunately that resulted in a dead end after several appointments, and the worst experience of my life. Fortunately the trauma has subsided with time. The end result though was no improvement.

The second part of my Dr's recommendations included seeing a neurologist. I joked with him that I felt old as I now had a Cardiologist, Urologist, and a Neurologist. He laughed and agreed!

Background Info

As far back as six months ago I started to notice that my soccer skills were diminishing. I couldn't juggle more than 4-6 times, previously I could go over thirty. I started to notice a different sensation in my legs; both legs. I started to fatigue far sooner than I felt I should, and although I was really getting into playing with both Brian and Dave, I was just not the same.

I pretty much ignored this, or tried to just play with it, for a few months until it started to become obvious that there was something serious going on. I couldn't turn, shoot, or make any complex soccer-related movements that were previously second nature. In my mind, I could visualize what I was attempting to do, whether it was shooting from 25 yards, or turning around a defender to open space for myself. I had to concentrate on placing my feet and had to worry about tripping over them or just falling over...

Yeah, something was wrong and fortunately for me I was playing soccer, or else I may not have been quite so distressed. My symptoms didn't prevent me from walking or even running for shorter periods of time, although I didn't attribute my loss of fitness to anything sinister. During games or increased physical activity, like working on my yard, I noticed my feet would develop "pins and needles" (known as Paresthesia), and they were slightly painful.

It is a pretty awful feeling not to be able to function as well as just a few months ago. It was affecting my ability to landscape the house (which had just undergone major renovation), play soccer and brought on fatigue with everyday activity.

The "different sensation" in my upper legs, between my thighs at first didn't bother me so much, I thought it was related to Sciatica or a pinched nerve. As time progressed from about 5 months back, to 3 months back, the sensation began to affect other parts of my legs. First the outside of my knees, then my shins and finally to my feet. It was time to see the doctor.