Picture The Pain

Happy New Year!  I know the month is half  over and I have not written a post since November but so much has happened and with the holiday's and cold weather settling in the month of December has been rough on this crazy journey of mine.

I know I speak and post at times a lot about pain and my condition but I truly believe there are more cases being misdiagnosed and this condition is not as rare as believed.  They call it the one in one million syndrome but I believe that saying should be changed to one of the millions who are misdiagnosed, and my purpose has become to spread the word even if it is one person at a time.

Thank you to those that were as excited as I was to be put back on my medication and possibly having a shot at another treatment plan.

I am happy to report  that since being put back on Diazepam and a much higher dosage then my other neurologist tried,  I can walk freely now for longer periods of time without feeling that with each step I'm going to fall over or actually fall over as my back muscles are so rigid, (imagine yourself walking in concrete and that is what I experience everyday as I try to walk).  I also have movement in my neck again without pain...may sound non-earth shattering to those who are healthy but to me and those that understand it's a huge improvement, to be able to hold my head up for longer periods of time is heaven.

One misconception that I would like to add is this does not cure me of my almost daily and sometimes multiple times a day spasms which can occur from emotional distress, a sudden noise, a touch or as my video will show a slight twist of my body a movement I did without even thinking about what I was doing.   What you will see can last for seconds, minutes or hours I never know, nor do those who witness them.  They also can come out of the blue and unfortunately I have little warning when I am about to go into a full blown spasm.

I know I have mentioned having body spasms and how the muscles move, twist  and go ridged without my control which  is the most unbearable pain I would not wish on anyone.  And I am now ready to share what a body spasms looks like please keep in mind no two people with Stiff Person Syndrome are alike.  And  my new neurologist by listening to me even through my tests have been negative has willingly put me on a higher dosage of that medication which helps give the  proof needed for those of us who's tests all come back negative that we do have Stiff Person Syndrome.  This to me was also proven the night I went into the hospital and they put Diazepam and Ativan via intravenous into my system to stop my body attacking itself which works much quicker then taking it orally. To those fighting to be heard please  keep fighting to have doctors understand you are not a drug seeker as so many believe is the case when you ask for higher dosages of medications deemed addictive.  Nor are you making up your condition and it can't be as bad as you say. I am not looking for sympathy by sharing this video just an understanding for all of those fighting that this condition is real, and yet because we look normal and show no outward signs of illness in a flash this is what can happen to us.

 This video was 10 minutes into a 15 minute spasm, which also is why my head is no longer on the pillows which help me as sometimes I suddenly can not swallow or breath properly during my spasms but Chris knows during this time not to touch me as he will make my spasms worse, unless he realizes I am in total distress and will move me. You will note how it moves from muscle to muscle so you can imagine the strain it puts on your system.

Also I would like to mention to those who I promise to call, visit etc once you watch my video I hope you have a better understanding as to why you suddenly don't hear from me, or why I cancel plans at the last minute, put yourself in my vulnerable place not knowing when or where this will happen, and then maybe you will understand,  Agoraphobia is becoming an issue as this condition takes over my life and others with this condition too.