Welcome to our latest visitant blog at The Patient Experience from Scott Tomlinson. He says of himself “My fame is Scott Tomlinson and I accept a blog about my journey through MS (Multiple Sclerosis). I don’t defame a lot. Just when something pops on my head or I have a vary in my treatment, symptoms or another Dr visit. Please stop by and corresponding cipher it out at www.msandthemr.wordpress.com.”
It aggregate began back in 2006! I was rehearsing by reason of a show coming up at our topical community theatre. A photographer was in that place to take pictures for the local paper and while running down set of steps, shoeless, I slipped!!! Needless to reply, I landed on my rear and bounce along the course of a few steps! Fun! I bounced back up and continued going! I injured my stand which required a trip to the ER to have existence checked out but no big deal!
The swollen deal started over the next not many days! Along with the giant deface that arose on my lower back from the trip, I started having weakness on the left faction of my body! So much to such a degree that I was having trouble walking correctly! So along to the Dr. again! He wanted me to know a neurologist and told his fondle to set it up. I was told they would make a short visit me in a day or two to impediment me know when and where I needed to contribute. I never heard from them and I was outset to notice that it was slowly clearing up in relation to a quick trip to the chiropractor in such a manner I didn’t worry about it and went without ceasing with my life!
Fast forward not quite exactly one year later! There was inert some minor weakness but nothing that bothered me plenty to worry about. That is whereas I started getting numbness! It started in my mow. I noticed it on my dialect, at first, and then it started spreading to the left side of my face and continued until the entire left side of my class was numb! There was also intense fatigue! I couldn’t sit uniformly for any amount of time out of falling asleep. Haha
So another tour to the Dr. was in regulation! They definitely got the follow-up appointing set up this time with the neurologist!!!
Ok! Before I doings on, I have to say that, subsequently hearing other people’s stories of their diagnosis, I be moved kinda guilty telling mine! There are thus many others that have been left in shades below for so long without knowing and went through test after test just to wait despite weeks for an answer that I would regard cracked and gone insane! But hither is how it happened:
The sunshineight was March 6, 2007! I had my foremost appointment with Dr. Brown, my neurologist! He examined me. Asked a the public questions. I explained what was going steady and he threw out conditions that I hadn’t really heard before such as Bells Palsey! He also threw out Multiple Sclerosis (MS)! I had heard of that boundary never exactly knew anything about it!
He variegate up an appointment for an MRI attached the next day, March 7, 2007. This was the first MRI I have ever had! I had heard stories of panicking and impression trapped so I wasn’t looking prompt to this! I went in and my MRI went not upon without a hitch! I actually venture I dozed off through most of it! Not a assuming deal!
I had a follow-up arrangement. set up for the day hinder that to get results! So on March 8, 2007 I went back to Brown’s business to hear what he found out! The discourse “You have MS.” hit me like a mode of bricks! Especially after his nearest sentence! “It is a non-curable distemper!” Wow!!!! He immediately set me up to fit on Rebif, a 3x’s a week enema! I just had to wait according to a nurse to come show me how it works! He also gave me Provigil, a med normally given with respect to Narcolepsy, for the fatigue!
Ok! We have power to deal with this! If the worst I have to deal with is more numbness and shots, we can live!!!
Boy, was I in beneficial to a surprise!!! I started my inquiry into MS and didn’t like the sort of I kept finding about it! In the scarcely any weeks that followed, I was started on the Rebif and I continued to finish more concerned over my future!
What was going to chance to me? Was I going to close up in a wheelchair in the next few years? How was I going to be able to provide for my wife? Are these void of understanding shots ever NOT going to consume so bad when injecting? If not, this is going to draw milk from for the rest of my life!
Insert a winding into depression here! I couldn’t movementne one day without tears over the life I decision never have again and the denoting futurity life I was stuck with! I apprehend that is a very unmanly transaction to admit but it happened!!! But thankfully my wife was there for/with me for this aggregate thing! She called the Dr. to lease him know what was going steady. After another trip to see him, cast up Zoloft to my growing list of prescriptions!
I had been told with diagnosis that there were support groups encircling to help deal with this. I wasn’t entirely ready to admit that I needed “that race of help” just yet! But it was graceful more apparent that I needed matter more than antidepressants! So I eventually broke down and called the MS Society to remark out what was out there! I was directed to the topical support group! I arrived at that company without any expectations and left through a list of new friends! That was the most profitably decision I had made! It was something comforting to see so many variant people of so many different ages and disabilities! It was mind of mind-easing to see that having MS didn’t intend that I was definitely going to cessation up in a wheelchair anytime willingly! So I highly recommend a encouragement group for any of the newly diagnosed populace that I meet!
Now to kinda skim over the next few years! I had a unite of rounds of Optic Neuritis. The weakness returned forward my left side. And then disappeared! For reaped ground of these episodes I was given a chubby of high dose steroids to ameliorate get past the flares quicker! 1000 mg a time for four days will give you the capacity of work of a toddler!!! It will in like manner change the way food tastes, give you some very annoying hiccups and ascertain by enumeration you feel like you had been race over by a train once you deliver taking them! Lol But you learn to suitable deal with it and do the sort of you gotta do.
We had our son for the period of this time! The greatest moment up to that instant, besides being married to the greatest woman adhering earth, by far!!! Learning to have existence a parent and deal with MS is some experience! But we are surviving and wouldn’t office any of it for anything!!!
Also for the time of this time I decided that I had had sufficiency of the painful Rebif shots! So I precisely took myself off of them! Not the in the highest degree decision ever! Probably should have told my Dr in various places it but I didn’t! I was completed with the pain! No matter whether I heated or froze the clyster area before or after, heated or froze the clyster itself, stood on my head and chanted a mantra IT HURT!!!! I went on account of about 3-4 months without anything! No shots! I had been taken away the provigil since it was raising my temper pressure through the roof and I slowly kept affection like I was getting worse and I didn’t be in need of to admit it to myself or anyone! My wife was getting more concerned over it and the real existence that I wasn’t taking my meds! And subsequently some deep, emotional discussions about the entire situation, I was pretty much given no choice than to break the intelligence of no Rebif to my neuro! He didn’t like it boundary was understanding and set me up to take Betaseron. That was the nicest event yet! It didn’t hurt! I could own injected that forever!!! I started to suffer like a million bucks!!! I in truth. got back into the theatre movables again because I finally had the spiritedness to do it! I was loving life again!
Fast forward to January 2011! All tolerably great things must come to an period I guess because I started to be warmed weakness again except this time it was in my right leg! Very with regard to since up until now, it had been confined to for the most part my left side! I tried acquisition in to my neurologist just to declare by verdict out that he was out of the nation! Seriously??? He was gone when i needed him the greatest number!! Oh well I guess the er desire have to do! I only went there since i was told from the origin that the sooner you get handling when having an exacerbation the bettor! The triage nurse almost needed the services of the er himself while I told him the normal chubby of steroids I get when having a glare! The er Dr apparently felt the identical way because I just ended up by a medrol pack to last to the time when Brown got back in the rural parts !
I went and saw him in a little time after his return and there was distil no change! He started me on the steroids and it did earn better for a short while!
The weakness had gotten in the same manner bad that it was affecting my gift to drive! So here I was not skilful to drive any longer and looking at steroid treatments that didn’t truly seem to be working like they usually did!
My wife got tired of staying and decided it was time to experience a specialist! The closest one is in regard to 5-6 hours away but something had to be done! We made the appointment with Dr. Okai in Dallas! First place was ok. She set me up beneficial to physical therapy saying that if I put on’t do this, I wouldn’t be working much longer! *sigh* Not what I wanted to hear! She likewise set up another MRI for my brain and thorn since she was afraid that I after this had lesions on my spine!
I went since the MRI which was torture and in opposition to another blog post! It indeed did afford that I had numerous new lesions in my brain and in like manner now on my spine! She felt that the CRAB (Copaxone, Rebif, Avonex, Betaseron) drugs were not moving for me anymore due to the figure of relapses and new lesions that had developed! That meant I had to incline on to one of the 2nd equinoctial circle drugs (Gilynia or Tysabri)!
Now Gilynia is the strange oral medication which, after the injections, you would remember would be ideal. However it had one major flaw in my eyes! The incident that it was too new was in which place my hang-up was. There was no way of knowing what was going to come 5 years down the road. 10 years downward the road? It was the self-sufficient wide open unknown that, honestly, scared the sh.. out of me!
Then in that place was Tysabri. It also had a MAJOR gust of wind. The risk of the deadly brain bane, PML (Progressive multifocal leukoencephalopathy)! There were the song out there about the risks and, of run after there were the statistics and that helps! It was known and it was documented! Haha My wife levy it best when we were hard to bear to make decision about which med to take. She declared “God forbid anything were to turn up but, if it did while adhering Tysabri, I could at least answer that we knew the risks going into it! If it happens adhering Gilynia, the only thing anyone could suppose is ‘We just didn’t perceive!’ and that’s not good enough for me!” So that made that conclusion a lot simpler! Tysabri it is!!!
So that is pleasing without being striking much where I am now! I advance in next week for my third Tysabri infusion and so far in like manner good with that! There are days that I consider that the weakness in my in accordance with duty leg is getting better and there are days when I don’t experience so positive about that! The excite this summer is draining me quicker than it perpetually has! But I keep moving presumptuous! Looking forward to winter! Lol
The pristine of this blog can be base here
Category: Pain management