Aa
Staying in Limboland - for now.
Will expand on this later, but the 3T w/wo brain, c-spine, t-spine series showed no new neurological stuff. Some spinal problems, but not neuro. Rx for amantadine, referrals galore.
Sorry you are not getting a diagnosis. I am glad they are addressing symptoms. I am thinking about you.
Alex
Alex
After reviewing notes, texts, & resting my brain & body from yesterday... (Was gone over 12 hours altogether)...
The referrals are not a kick to the curb. Dr. Doogie remains the coordinator of this search, but he believes it is looking less like MS, and knows we can't start DMDs uless it looks more like MS (unless I want to pay for them out-of-pocket; any takers on that?).
He says we will tackle symptoms the same way we would if it was definite MS. I am in great need of symptomatic relief right now, and that is one of the strengths of the MS center. He is referring me to the CCF spine center, to one of their neuro-ophthalmologists, to a physical therapist for balance problems, and sending me for an updated neuro-psych battery.
Fatigue is the real killer for me, even though it's not as constant as the balance and vision stuff. It will knock me flat at times. Amantadine sounds like a good choice, from what I've (just) read. I wasn't familiar with it, though I'd heard the name here, from someone. We will start that tonight; he said results wouldn't begin to be evident for 2 or 3 weeks.
Spine is a bit of a mess. Two places in cervical region and one in thoracic in which bulging discs and/or displaced vertebrae make for some narrow cord passages. Cord is clear of lesions, though. I strongly suspect I have lumbar spine issues too, so the referral will probably be a good thing. MS doc said his limited expertise in that area tells him that the spine surgeons probably won't feel that the c- & t- sections warrant surgery. Don't know what else they might do, but I guess we'll see when we see.
Physical therapist was impressed with my strength all around, but sees a definite slowing in a variety of activities, referencing norms. Took me about 50% longer to walk across the room & back than predicted for a 56yo M, for instance.
Wants me to find local therapist who can give me balance-challenging exercises to practice. I told her that I think that's what I did in 2009, with so-called "vestibular rehab," that had zero -- maybe negative -- effect then. She thinks we try again. Okay.
She also thinks I need to dust off the Schwinn we have stashed upstairs and crank out some virtual miles. When practical, I should be strolling around town with my sweetheart and a pedometer, a bit more briskly than the pace to which we're accustomed.
I know I've omitted something. It might come to me. Okay, gotta scoot for now. Blessings to all.
The referrals are not a kick to the curb. Dr. Doogie remains the coordinator of this search, but he believes it is looking less like MS, and knows we can't start DMDs uless it looks more like MS (unless I want to pay for them out-of-pocket; any takers on that?).
He says we will tackle symptoms the same way we would if it was definite MS. I am in great need of symptomatic relief right now, and that is one of the strengths of the MS center. He is referring me to the CCF spine center, to one of their neuro-ophthalmologists, to a physical therapist for balance problems, and sending me for an updated neuro-psych battery.
Fatigue is the real killer for me, even though it's not as constant as the balance and vision stuff. It will knock me flat at times. Amantadine sounds like a good choice, from what I've (just) read. I wasn't familiar with it, though I'd heard the name here, from someone. We will start that tonight; he said results wouldn't begin to be evident for 2 or 3 weeks.
Spine is a bit of a mess. Two places in cervical region and one in thoracic in which bulging discs and/or displaced vertebrae make for some narrow cord passages. Cord is clear of lesions, though. I strongly suspect I have lumbar spine issues too, so the referral will probably be a good thing. MS doc said his limited expertise in that area tells him that the spine surgeons probably won't feel that the c- & t- sections warrant surgery. Don't know what else they might do, but I guess we'll see when we see.
Physical therapist was impressed with my strength all around, but sees a definite slowing in a variety of activities, referencing norms. Took me about 50% longer to walk across the room & back than predicted for a 56yo M, for instance.
Wants me to find local therapist who can give me balance-challenging exercises to practice. I told her that I think that's what I did in 2009, with so-called "vestibular rehab," that had zero -- maybe negative -- effect then. She thinks we try again. Okay.
She also thinks I need to dust off the Schwinn we have stashed upstairs and crank out some virtual miles. When practical, I should be strolling around town with my sweetheart and a pedometer, a bit more briskly than the pace to which we're accustomed.
I know I've omitted something. It might come to me. Okay, gotta scoot for now. Blessings to all.
Just wanted to wish you well, PastorDan. How very, very frustrating for you. Hoping your referrals get you to where you need to be to get the answers you need.
I'm sorry you didn't get something more but maybe the referrals will yield more answers? I was put on Amantadine my first relapse and it really helped with the fatigue and as a bonus it protects against flu. I hope it helps in the mean time and that you get more answers, I'll be praying for you!
PD - I know its not what you want to hear but are you comfortable with what you heard so far? Referrals are far more preferable than come back in six months.
I'll wait for the further explanation.
I'll wait for the further explanation.
I don't have the words to tell you how bad I feel for you..
this is the stress of us in living limboland for years...
take care
JB.
this is the stress of us in living limboland for years...
take care
JB.
So frustrating, isn't it. I feel your pain, being stuck in limbo land myself.
Maybe the referrals will lead to an answer. Maybe even for something that can be cured.
Laura
Maybe the referrals will lead to an answer. Maybe even for something that can be cured.
Laura
I'm still here in Limboland too. We ought to have tea sometimes!
Sorry, I know it's extremely discouraging -- even more so for you as I know it been years of waiting.
Praying for you today.
Sorry, I know it's extremely discouraging -- even more so for you as I know it been years of waiting.
Praying for you today.
Well, I guess that is at least some news and I hope you won't have to wait for your referrals.
Thoughts and prayers headed you way,
Corrie
Thoughts and prayers headed you way,
Corrie
hang in there, it seemed like it took me forever and a day to get a Dx and not really sure I like it now! LOl
Hi Dan -
Keeping you in my thoughts and wishing you a prompt resolve! Wishing you safe travels!
Lizzie
Keeping you in my thoughts and wishing you a prompt resolve! Wishing you safe travels!
Lizzie
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