Update

Feeling OK, just fighting off a cold now. My side and leg have improved tremendously but unfortunately my left arm is still tingly, and not improving much, if any. I am waiting until my cold goes away and if my arm is still jacked I am probably calling my neuro and setting something up for Cytoxin, we will see though. Definitely will not happen before April 11th though because its not ruining my trip to Phoenix lol. Slacking on the updates but it hasn't changed much lately. Thanks for following!

Update

No Cytoxin (chemo) yet, whoop! I have been feeling a tiny bit better and they want me to hold off and do a MRI in 3 months. If my symptoms get worse at all I have to start ASAP though so fingers crossed. The CCF Mellen Center is awesome and I am very pleased...

Twitter

To all of you who use Twitter, follow MS365.org using the following link! http://twitter.com/MS_dreams

Cytoxan Update

Here is a link to a treatment schedule that is more what my neurologist was speaking of. http://my.clevelandclinic.org/Documents/Multiple_sclerosis_center/Monthly_Cytoxan_7229.pdf

Blah

Incredibly stressed about the whole chemo treatment that I am probably going to be doing. I have an appointment with the Cleveland Clinic March 17th so I am hoping they will ease my mind a bit. Never did I think chemotherapy was a treatment option for MS, as im sure no one else has heard of it either unless they experienced it. I try to be positive always but I will tell you what, it has been hard the last couple days with all of this new info. We found a doc on the clinics site which isnt exactly the same dosage as what my doc mentioned (she mentioned one treatment a month, this doc is for a week straight) but if you want to be depressed please do read, it worked well to depress me but if the Clinic thinks its what I should do instead then we will see what happens. Just don't freak out, like I did, because hopefully I only need once a month not 5 days straight... http://www.clevelandclinic.org/health/health-info/docs/0300/0378.asp

Not so wonderful news...

So I found out today that Avonex is not working for me. Good news is I no longer need a shot every week. Bad news... I need to start on Cytoxan which is a chemotherapy. It is not as potent as a cancer treatment but has some of the effects. Once a month though, wish me luck. I am following up with the Cleveland Clinic's Mellon Center before I start but if that's what will help, bring it on...

Website Update

We have updated our donation page to accept donations via PayPal, Google Checkout, and Check/Money Order. We have had some issues with using PayPal alone and wanted to make the process easier and offer more options. If anyone has issues with the new site setup please let me know. http://www.ms365.org/RegisterDonate/tabid/168/Default.aspx

2/23

My last update (symptom related) was Saturday but not much has changed. Still in the 6.5 to 7 range but not getting worse which is most important. I was in a very depressed mode earlier, frustrated because my neurologist is out of town and I feel like I should be receiving some type of treatment but on the other hand I am more than functional and I can't complain. Had a lot happening today and little sleep so tomorrow will be a better day 8-)

Meeting

I am meeting with the President/CEO of the Make-A-Wish Foundation in April! Read the announcements section towards the bottom of our homepage for more information. www.ms365.org

Tribune

The Tribune finally got my press release in. It was the Sunday paper, I just found out this morning http://www.tribtoday.com/page/content.detail/id/533821.html

Little good news

So I am thinking yesterday I was like a 5.5 out of 10, today I am feeling like I jumped to a 7! Side is feeling much better, arm is a little tingly but not too bad, leg is behaving. Lets keep this up, its funny though when the sun comes out I feel so much better.

2/19

Still about the same. My side is a little better but my arm is a little worse.

Thanks to Lakeview 7th and 8th grade girls basketball. They are holding a Foul-A-Thon for charity. 7th Grade is raising money for ms365.org and eighth grade for the make-a-wish foundation. Below is a link to more information. Thank you so much Lakeview! www.ms365.org

2/18

Ughh so today was about a 5.5 from yesterdays 6. Arm was extra annoying today, side was numb and hurting, leg burning when I turn my head or look down. I had to call the neurologist today to see if we should move forward with more treatment, not sure what exactly will come of it. Seems like the IV treatment did not do much if anything for me. I have kind of accepted that it is just not going to help as it has been a week now.

Sooo, quite frustrated today, a little worried about why in the world the IV didn't help, and trying to figure out what the next step is. Hopefully I start feeling better and dont have to do any more treatments.

On a lighter note, I am absolutely overwhelmed with the support I have been receiving from the MS365.org site. So many people have donated and shown so much interest, I am just floored by that. Thanks to everyone who has been there for me!

Update

Well I'll keep today short and sweet. If yesterday was a 7 on a scale of 1-10 (10 being good), today was a 6. Hopefully tomorrow is better

2/16

Finally today I am starting to feel a little bit of relief from the IV treatment. Yesterday was just more of the same, and actually a bit more than that even. Had like 3 bouts of breaking out into a cold sweat which were not wonderful and had some nervous moments for some reason.

Today though, most of the day my side has been barely bothering me like it has been. It is still a but numb and towards the middle of the day I started getting the tight feeling, but it has been an improvement. My muscle finally feels like maybe it is relaxing instead of spasm-ing every day for the last week. Still have a ways to go, but I have been waiting for an improvement and finally today can say I am starting to see it.

Hopefully tomorrow I can share some more good news!

Press Release

The press release is in the Vindicator today! Thanks again to Bill Alcorn for doing the story. http://www.vindy.com/news/2010/feb/16/group-formed-for-ms-victims/

Blah

Not quite as "puffy" feeling today, but still out of it. My left arm is really tingling today and my side is really tight. I sure am ready for some relief, the longer it takes the more frustrated I am getting. I will feel better once I know this treatment actually will work but unfortunately I am not yet convinced. I know it will be effective sooner or later but waiting sucks. Since it is my first treatment ever of IV I don't yet know the timeframe of healing. Everyone reacts different, so my body must be one that is stubborn. Some people say it can take a week, but that it really does work once it kicks in. Waiting...

Ughh

Wow 3 days of IV steroids takes everything out of you, I have now learned. Symptoms are the same, maybe a bit worse, but I think it's because of the fatigue. After researching, many people were saying that 1-2 days after therapy to plan on doing nothing because you will be beat. I only did 3 days, 5 days is a standard and some people gave to do 10 days straight, ugh.

Still waiting for relief but it will come. Just need to relax off this fatigue and let the meds take over. Hopefully by the end of the weekend I will be back on the road to recovery.

2/11 to 2/12

No panic attack this time lol. It is really an easy procedure, nothing to it. I did take .5mg of Ativan which does help take the edge off for sure. I read a chapter of my homework as I sat there. Taste was not as bad as it was the first day.

Still no real relief from symptoms though, but they said it may not really happen until days after the last treatment. I actually feel a little crappier today than I have, but I slept like only 3 hours. I will be back on a normal shift next week and its the weekend, so things will improve.

Also, I am creating a new website on caringbridge.org that will make it much easier and user friendly to follow my condition. I will still update the sympyoms blog for web traffic but the new site will be the main source of updates for everyone. Ill find some computer nerd way to have the website auto update my blog im sure. I will have details when the site is ready and send everyone a link. Its a great site, we know someone who got in a bad wreck and was paralyzed waste down, and it is such a good way to follow the progress.

One more treatment today and then no more injections, yay!

Phew

First IV steroid treatment today. I had a major panic attack right after they put the IV in, before they even started the steroid. Just the whole idea of something new and not knowing what it wold feel like. I was in a cold sweat, arms were both practically numb, I was just a mess for about 5 minutes. The nurses at Trumbull Memorial Hospital have really been great, both with this and the MRI. They got me orange juice, candy, teddy grahams, cold rags, lol it was cool. I need to be treated like a 4 year old but hey it works.

So on to the actual treatment. It was really nothing at all, just boring because i have to stay entertained for an hour during the whole thing. We watched Raymond, it was funny and kept my mind off the treatment. The worst part of the whole thing is the nasty taste it puts in your mouth. It is really bad during the treatment which is why they had Jolly Ranchers for me. They notified me that it the nasty taste was goung to be around until treatment is done, yay. It is better now than earlier but I am sure will be renewed after tomorrows treatment. It tastes like a metallic taste, or my best explanation is its like chewing on a plastic tube... who knows.

All in all it was good, it really didn't help my symptoms at all yet but they said it would take a couple days to kick in. The treatment is very un-eventful and if anyone has to get something similar don;t worry, its really not horrible.

Nervous

Feeling kind of crappy today, stupid side is really being annoying. Kind of down about telling the world and everyone at work about my MS now. Its weird because in some strange way its like I have no pride now. Does that make sense?

Anywho, just a weird day, I guess bad days happen. Tomorrow is my first steroid IV treatment, not sure what to expect but seems like it will not be bad. Almost feels like by doing this I am entering a new stage of MS or something. I did not want to get into IV treatment until absolutely necessary. I feel like it is not bad enough to be getting it, yet I know it will help and is for the best.

Sorry for being down today, but all will get better (especially when I feel better). I know this is temporary and that everything will return to normal sooner or later, I am just ready to move past this part. Thanks to everyone who is reading!

Crazy Week

Had my MRI today, pretty relaxing. The contrast shot hurt like a mug and my arm is still sore but otherwise it was smooth. So everyday this week I am getting an injection, yay! Today was contrast, tomorrow Avonex, Wednesday - Friday steroid via IV. Fun week.

Symptoms are still about the same, nothing new really, same feelings in arm and leg, side still numby. Talked to my bosses and HR today, told them about having MS and got some things taken care of. They were very understanding which made my life easier. Sucks though because now and forever everytime they look at me they will be looking to see if I am "getting worse". Pretty much once people know you have MS they will always look at you different and be looking for signs that you have it. It happens...

MRI

MRI this afternoon. Is it strange that I actually enjoy lying in a tube and listening to music? They are doing brain and spine, usually it's one or the other and takes an hour to an hour and a half. I am expecting about a 2 - 2.5 hour test.

Hoping to get FMLA papers filled out this morning and also talk to my bosses but I am leaving at 10:am, not sure if I will get everything accomplished in time. 

Update

Nevermind the arm thing, it's still jacked up, crap. Lol it was OK earlier now it's all tingly along with my fingertips

Improvement, I think

My arm is not quite as strange feeling today, side is still numb but bearable. After deep thought it seems meeting with some people at work Monday has to happen.

Fun Fun

Today has been a fun one. My left side and back still have the numb band. Left leg is burning and getting an "electric" feeling whenever I turn my head sideways or downward. In addition, today my left arm and hand are tingling and made worse by turning my head sideways or down. I was up at 3:15 AM and couldn't fall back asleep so the hope is that with sleep things will improve.

Monday is my MRI on the brain and back, now after speaking to the Neurologist earlier today I have a scheduled steroid treatment via IV drip on Wednesday, Thursday, and Friday. I guess it takes an hour to administer the IV for full treatment over 3 days. Unfortunately, I work like most human beings and not sure how that will be working out. I am hoping with rest I am better by Monday and can cancel the IV treatment but if not I have to probably do something I have avoided: Speaking with my boss and the Director of IT to explain that I have MS and will probably have to use 3 sick days... I REALLY DO NOT WANT TO DO THAT, I like my little secret hidden from management, at least, but it will be time to share if this must happen.

Wish me luck all, I am in need of some positive...

2/4

SAME... lol Still numby, had some quick short lived dizzy episodes today but I was rather stressed at work, everything was breaking.

2/3

Ugh today was not great but kind of stressful so lets hope that is it. My left side under my chest was numb/tight feeling like having a charlie horse all day. It was actually hurting a bit by afternoon, strange. I am down to 40mg Prednisone starting this evening and working my way out of the steroid treatment. Nervous because I don't feel great but hoping things begin to improve. Still though nothing crazy happening and nothing new, no dizziness, I am still blessed to only be having these annoying little issues.  

Also, I had a great meeting/photo opp with Bill Alcorn at the Vindicator in Youngstown this afternoon. I think it will be listed tomorrow but will let everyone know. Very thorough and exciting, I can't wait to see the write up on ms365.org!

Groundhog Day...

Pretty much explains my symptoms over the last couple of days, like the movie groundhog day the same thing keeps happening over and over. Still have the numby side/back on my left side, seems to be a bit worse today than yesterday but I had a little bit of stress today, plus it was shot day. That tends to make everything feel a bit more annoying for a day or two. Also, here is a great link discussing the Psychosocial Impact of MS. It may help people understand some of the anger and depression involving MS. Psychosocial Impact of MS

2/1/2010

Still about the same, a little numb on the sides, but I think maybe there is some improvement overall.When not dealing with traffic on the way home anyhow, arghh I was getting frustrated. Anywho, so far so good, nothing new. Get to go for a MRI on my head and spine Monday 2/8 so that's fun... lol

Today...

Well I woke up before Noon, good start. Not quite as numby feeling today, no weird pains yet so fingers are crossed.

and then...

So after about 5 hours sleep yesterday evening, went back to bed around 1:00AM, slept until 12:00PM (minus about an hour to feed da dogs). So thats about 15 hours of sleep. When I woke up, my right hip and top of my leg hurt like a mug, and from my middle front left side right below my chest, stretching back around my back is numb. I can feel pressure but thats about it, Selena was practically stabbing me with her nail to see if I felt it and I had no reaction. Friggin medicine should be working by now, getting frustrated...

Sleep

So one of the joys... Got home from work around 5:00, ate dinner, fell asleep, and just woke up. Its 11:00 PM now... Will probably sleep all night also

Symptom Updates

Today is just another day of the same. A little numbness in my left toes, more of an annoyance than anything. Only other thing is the stupid side hug that keeps on keeping on. I still can't complain though, it could always be worse.

I almost forgot

The fun thing today has been every time I kneel down, my knee hurts horribly for 5-10 minutes. It was worse this morning, I hope it quits asap. Rouch!

Today...

So now that you are up to date lol here is where I stand today. I want to update this daily, or as my symptoms change. I have been doing well for years other than stupid symptoms here and there which I will be sharing from now on. Up until a week or two ago things were good but I started to get very fatigued and could barely stay awake through the day at work or home. I started getting pain in my right knee, then burning in my left knee, then burning up and down my left leg, then side tightness ( The MS hug). I started on Prednisone again last Thursday and it is helping now. As of today, I still have the side tightness and some leg burning/numbness when I stretch my neck or tilt my head. No dizziness and nothing unbearable as I now have medicine in me. I had an appointment at the neurologist today and it seems to just be an inflammation and not a relapse, as long as it does not get worse or start new symptoms. I am being setup with another MRI on my brain and back in a few weeks so we will see how that goes. It is mainly to verify that the Avonex shot/treatment I am on is working correctly. For those of you not familiar with Avonex, it is an Intramuscular (IM) injection that I have to do once a week. The needle is 1 and 1/4 inches long, not a fun shot. All current MS treatments require shots BTW. I did it myself for quite some time but  thanks so much to a nurse at my wife's work I have it done for free now every week (Thank you Lord!).

I hope this does not freak or gross anyone out, but its life. Anyone who wishes to follow my symptoms and challenges feel free to follow this blog, otherwise don't. I will tell it how it is, whether good or bad, and hope that it not only benefits myself, but others who may have questions. Lastly, anyone who wants to know but is afraid to ask, here you go. Thank you so much for your support, and don't forget about joining www.ms365.org. 8-)

So it begins...

After much online research and constantly coming up with multiple sclerosis as a diagnosis for myself (everyone thought I was nuts) I began to get more and more concerned. In early September 2006 I was returning to Kent State to finish 3 needed classes for my Associate's in Computer Technology. I started feeling sick to my stomach a bit, and thought I was getting a head cold or something. The next day (a Sunday) I felt even worse. I had also noticed strange sensations once again in my legs and sides. By Monday the room was spinning, I was so dizzy and had to get to the doctor. It got to a point that I could not do anything but sit on the floor next to the toilet and vomit. Anything I did whether it be lie down, situp, stand, walk, whatever made me sick. I returned to the doctor the next day and they put me on Meclazine which helped a tiny bit with the sickness. At this point though an MRI was ordered on my brain, as nothing seemed to be causing the issue.

On September 14th in the morning I had my MRI. By that afternoon I had a message on the answering machine saying my results were in and the doctor wanted to see me ASAP Friday, and for my wife to join me. On September 15th, 2006 I was officially diagnosed with MS (my parents anniversary of all days). I missed the whole first week of college, and my sister was getting married the next day (I was in th ewedding party).

After weeks and weeks of fighting with symptoms, numerous tests and MRI's, a visit to the Cleveland Clinic, and some strange eye issues (it would take like 10 - 15 seconds for me to get both eyes focused in the same object not to mention a short spell of bright streaks). I did somehow manage to complete my degree that semester and survive running my business, although I lost several clients due to my lack of availability through my systems.

In the beginning...

This is a summary of what initially I was feeling before I was diagnosed in 2006. Sometime between around 2002 - 2004 I would have some light dizziness and always just assumed it was an ear issue or something. I visited doctors and always got the "all clear" on ear issues but it was never enough to worry about. In 2004 I started to get tingling/rubber band feelings in my legs. We had alot happening with moving and all at the time and it was again pushed off as a sprain or strain of some sort. Somewhere in this time frame through a routine blood test I found that my liver enzymes were higher than normal, acctually to a point of jaundice at a point where my eye balls were yellowish. This was much more of a worry to doctors than my other issues at the time and I spent about 2 years going through blood tests, CAT scans, etc.. with no outcome. It seems after all the liver enzyme issue is some warped symptom that MS patients can face, who knew.

Symptom Updates

Alot of people ask, and maybe don't want to ask, how I am feeling and what symptoms I have on a daily basis. I may go months with nothing and then boom, surprise. I felt this would be a good way to communicate with anyone who cares to know and also for me to track things myself. So here we go, I will be starting with the story of how and when, then bring it up to date...