And what a week it has been. I think transparency is good so...I just going to tell the story like it is. I you make it through...it does have a good ending.
I am on Tysabri and was having some break-through symptoms. I had an MRI last month and my C-Spine was lit up. C-Spine lesion can be dangerous, and they can control major organs. And apparently it is true that my MS Specialist did not read the MRI last month.
I went to the hospital for what was suppose to be steroids just to dampen the flare that was starting. Much to my surprise, my vitals were really bad. I was having tachycardia, my BP was bottoming out and my respiration was dangerously low. Sent to ER.
They could not stabilize me in the ER and threw me into a CT to make sure I was not having a brain hemmorange. They found out about the MS Cervical Lesions and hooked me up to Steroids.
We will skip all the details...but it was looking grim and everyone thought those cervical lesions were busting through.
I was thrown into their brand new MRI machine. I was flaring a little in the brain stem...but the cervical lesions were GONE! They threw me back into the machine a second time and went from brain to the end of the spine. Not only were the C-Spine Lesions gone, but so was one one my lower spine. All my brain lesions...I have about 30 were present and accounted for. And no new lesions.
So more tests got ordered and once again I had severe anemia. Bad enough to cause a possible heart attack. So I was given Iron Infusions as well. Additionally, I had to go through a series of heart tests to make sure no damage was done.
The Cardiologist said that it was one collective sigh from the Medical Team when they saw the C-Spine lesions gone. He said, he can fix my heart, but there was nothing he could have done about that C-Spine lesion.
They told me I was no longer dead woman walking as long as those lesions don't cone back....they have before...so it is critical I stay on my DMD.
The TY was mostly responsible for taking care of the lesions, but I should have been put on Steroids a month ago once the C-Spine lit up again. I am at a loss about my MS Specialist...and I really have to think it through. I don't know who's fault it was him or his Nurse...but someone dropped the ball. But I think I will leave that conversation for another day.
The oncologist who gives me the TY has been notified to closely monitor my Iron levels as well as my MS Specialist.
Some C-Spine lesions are dangerous. They are usually what causes MS complications and death. But this week I dodged a bullet...and I will take it! And of course I am staying on TY as long as I can.
TY has truly saved my life twice now. I am not advocating TY because it is a dangerous drug...but sometimes we have no choice. If TY would not have been put back on the Market...I would not be here today.
This experience has changed me. I am going to give some serious consideration to Lemtrada if it gets approved. But not until all my TY time is used up.
I am on Tysabri and was having some break-through symptoms. I had an MRI last month and my C-Spine was lit up. C-Spine lesion can be dangerous, and they can control major organs. And apparently it is true that my MS Specialist did not read the MRI last month.
I went to the hospital for what was suppose to be steroids just to dampen the flare that was starting. Much to my surprise, my vitals were really bad. I was having tachycardia, my BP was bottoming out and my respiration was dangerously low. Sent to ER.
They could not stabilize me in the ER and threw me into a CT to make sure I was not having a brain hemmorange. They found out about the MS Cervical Lesions and hooked me up to Steroids.
We will skip all the details...but it was looking grim and everyone thought those cervical lesions were busting through.
I was thrown into their brand new MRI machine. I was flaring a little in the brain stem...but the cervical lesions were GONE! They threw me back into the machine a second time and went from brain to the end of the spine. Not only were the C-Spine Lesions gone, but so was one one my lower spine. All my brain lesions...I have about 30 were present and accounted for. And no new lesions.
So more tests got ordered and once again I had severe anemia. Bad enough to cause a possible heart attack. So I was given Iron Infusions as well. Additionally, I had to go through a series of heart tests to make sure no damage was done.
The Cardiologist said that it was one collective sigh from the Medical Team when they saw the C-Spine lesions gone. He said, he can fix my heart, but there was nothing he could have done about that C-Spine lesion.
They told me I was no longer dead woman walking as long as those lesions don't cone back....they have before...so it is critical I stay on my DMD.
The TY was mostly responsible for taking care of the lesions, but I should have been put on Steroids a month ago once the C-Spine lit up again. I am at a loss about my MS Specialist...and I really have to think it through. I don't know who's fault it was him or his Nurse...but someone dropped the ball. But I think I will leave that conversation for another day.
The oncologist who gives me the TY has been notified to closely monitor my Iron levels as well as my MS Specialist.
Some C-Spine lesions are dangerous. They are usually what causes MS complications and death. But this week I dodged a bullet...and I will take it! And of course I am staying on TY as long as I can.
TY has truly saved my life twice now. I am not advocating TY because it is a dangerous drug...but sometimes we have no choice. If TY would not have been put back on the Market...I would not be here today.
This experience has changed me. I am going to give some serious consideration to Lemtrada if it gets approved. But not until all my TY time is used up.
so it doesn't happen again ...)
,
I thought for sure one of those C-Spine Lesions busted through, if not both. And had I not been put on TY...I would have been gone last year. This was my third set of disturbing C-Spine lesions. I hope that I don't get a fourth set. My MS is of such, that I have to stay on a DMD...I'm like you, the odds are not important for me anymore.
Comment