Aa
Back from hospital and gonzo Solu Medrol Tx
Hi, Friends!
I am not known to many of you, but love so many others of you. I've been hanging out here since the dawn of time, it seems with no diagnosis of anything due to no visible lesions on MRI and no O-Bands. And having very anal and stuck in the box neurologists does not help.
I had a very hard time this past February with left sided weakness as well as moderate right leg weakness. Vertigo was really rough, too. A VNG showed central vestibular dysfunction. My doc would only give me Medrol dose pack for it and it did nothing for me. I was miserable and it lasted until just a few weeks ago. I had just started walking short distances with my husband and feeling pretty good. My internist put me on Prozac which helped immensely with my energy and mood.
Well, my recovery was short-lived. Last Saturday I developed extreme fatigue, which is my signal that a relapse is coming. By Wednesday, I had difficulty making it up the stairs in my home. I barely made it through work on Thursday (physically). By Thursday night at my son's baseball game, I was done for. The switch flipped and I started my shuffle. I went to bed and the next morning it was still there. My husband took me to the ER (of the hospital I work for) and there I stayed.
Amazingly, the ER doc that saw me remembered seeing me two years ago and giving me my first LP which showed slightly abnormally high protein levels. He patiently took my history and ordered a CBC and Sed Rate. Nothing more. My friend in registration sits right beside him as he makes his calls and came to my room to say he REALLY went to bat for me. He called a neuro consult and called an admitting team to say that I had suffered SO much over the last 4 years with no diagnosis and am too young (45) to have this many health problems. He wants them to get to the bottom of what's wrong with me NOW.
My nephew is a tech in the ER (nursing student) and he heard the doc say that he didn't want me to do any unnecessary testing because I'd been through so much already. He wants everyone to use their heads and come up with an answer for me. He said the patient is very frustrated and we all should be, too.
I was very touched to hear it all.
The doc came in my room later and all he said was that I would be admitted and gave me my room number. He would make sure I started the Solu-Medrol before I left his Unit. I almost couldn't contain myself when I thanked him as he quickly walked out.
Most of you won't remember, but last year when I was in the hospital, my neuro's partner, the evil female partner came to see me and was so cruel. She was awful. She insisted I had complex migraines. I almost made a request not to see her. Well, the neuro consultant came striding in, and guess who it was? Yes, Dr. Cruel Female Partner!
Well, I don't know what happened, but she was wonderful! She examined me and insisted on admitting me and said that my trouble was either infection or inflammation, and she was leaning toward inflammation. She wanted me on high dose Solu-medrol and see how I was in the morning. I asked if I could try it for longer. She said, Of course. Let's see how you are on Sunday. (Who WAS she?)
I work in Bed Management alongside a bunch of smart nurses who insisted on getting me a bed in the Neurology Unit. My coworkers made sure it was private! My admitting team were internal med docs, but all my nurses were trained in neurology. What more could I ask for? It was perfect.
Everyone was wonderful, except for a slightly rocky start with the resident who came to see me with a PA student. He examined me and took my history. His wise words were, "Complicated migraines can do strange things." OMGosh.
I wasn't going to let him go there. He's young and green and needs to know.
I said, "My neurologist has absolutely ruled out migraines as the cause of my weakness. I do get migraines, but they're not causing my episodes of weakness."
Oh, and how does he know this...he put you on your Topamax, and it didn't help?
No. He did try Verapamil, which is sometimes prescribed for Hemiplegic migraines which can produce true weakness in one side of the body. They're the only type of migraine that can cause true weakness, and it's ony one sided. My weakness isn't always one-sided. THe reason he ruled it out was because I have hyper reflexes, and not only that, spreading reflexes. Migraines don't produce that. He's a migraine specialist, so I trust him on that.
Ka-Ching. The PA student looked at me with a smirk. I think she must get tired of this guy. My mom was pretty happy and I was, too.
He said he certainly wasn't going to disagree with the experts and would defer to them. If I needed anything at all I should feel free to have him called. Well done.
After I settled in well, I called my dear, dear friend Quix, whom I always call when I'm in the hospital. She was kind enough to talk at length with me and was very reassuring, as she always is. She is my touchstone. Thank you, Quix.
I finished my third 1000 mg solu-Medrol dose today at 3:00 and my family picked me up to take me home for a Mother's Day BBQ. They all had cleaned the entire house after I had been sleeping all last week and made a wonderful dinner. My son's girlfriend is on her way with a little gift for me.
The BEST thing is that my husband is coming around. He's asking lots of questions about MS and is accepting of the walker I came home with. He asked the docs about MS. They said that they couldn't diagnose me with anything now, but would like to see me get another MRI in 6 months. My hubby then asked if he could just keep going on bringing me in for an "oil change" every 3 months. They chuckled politely and said No. We have to find a diagnosis. ER doc made sense to them.
Ee Haw.
Feeling stronger. Sending Love. Happy Mother's Day.
Momzilla*
I am not known to many of you, but love so many others of you. I've been hanging out here since the dawn of time, it seems with no diagnosis of anything due to no visible lesions on MRI and no O-Bands. And having very anal and stuck in the box neurologists does not help.
I had a very hard time this past February with left sided weakness as well as moderate right leg weakness. Vertigo was really rough, too. A VNG showed central vestibular dysfunction. My doc would only give me Medrol dose pack for it and it did nothing for me. I was miserable and it lasted until just a few weeks ago. I had just started walking short distances with my husband and feeling pretty good. My internist put me on Prozac which helped immensely with my energy and mood.
Well, my recovery was short-lived. Last Saturday I developed extreme fatigue, which is my signal that a relapse is coming. By Wednesday, I had difficulty making it up the stairs in my home. I barely made it through work on Thursday (physically). By Thursday night at my son's baseball game, I was done for. The switch flipped and I started my shuffle. I went to bed and the next morning it was still there. My husband took me to the ER (of the hospital I work for) and there I stayed.
Amazingly, the ER doc that saw me remembered seeing me two years ago and giving me my first LP which showed slightly abnormally high protein levels. He patiently took my history and ordered a CBC and Sed Rate. Nothing more. My friend in registration sits right beside him as he makes his calls and came to my room to say he REALLY went to bat for me. He called a neuro consult and called an admitting team to say that I had suffered SO much over the last 4 years with no diagnosis and am too young (45) to have this many health problems. He wants them to get to the bottom of what's wrong with me NOW.
My nephew is a tech in the ER (nursing student) and he heard the doc say that he didn't want me to do any unnecessary testing because I'd been through so much already. He wants everyone to use their heads and come up with an answer for me. He said the patient is very frustrated and we all should be, too.
I was very touched to hear it all.
The doc came in my room later and all he said was that I would be admitted and gave me my room number. He would make sure I started the Solu-Medrol before I left his Unit. I almost couldn't contain myself when I thanked him as he quickly walked out.
Most of you won't remember, but last year when I was in the hospital, my neuro's partner, the evil female partner came to see me and was so cruel. She was awful. She insisted I had complex migraines. I almost made a request not to see her. Well, the neuro consultant came striding in, and guess who it was? Yes, Dr. Cruel Female Partner!
Well, I don't know what happened, but she was wonderful! She examined me and insisted on admitting me and said that my trouble was either infection or inflammation, and she was leaning toward inflammation. She wanted me on high dose Solu-medrol and see how I was in the morning. I asked if I could try it for longer. She said, Of course. Let's see how you are on Sunday. (Who WAS she?)
I work in Bed Management alongside a bunch of smart nurses who insisted on getting me a bed in the Neurology Unit. My coworkers made sure it was private! My admitting team were internal med docs, but all my nurses were trained in neurology. What more could I ask for? It was perfect.
Everyone was wonderful, except for a slightly rocky start with the resident who came to see me with a PA student. He examined me and took my history. His wise words were, "Complicated migraines can do strange things." OMGosh.
I wasn't going to let him go there. He's young and green and needs to know.
I said, "My neurologist has absolutely ruled out migraines as the cause of my weakness. I do get migraines, but they're not causing my episodes of weakness."
Oh, and how does he know this...he put you on your Topamax, and it didn't help?
No. He did try Verapamil, which is sometimes prescribed for Hemiplegic migraines which can produce true weakness in one side of the body. They're the only type of migraine that can cause true weakness, and it's ony one sided. My weakness isn't always one-sided. THe reason he ruled it out was because I have hyper reflexes, and not only that, spreading reflexes. Migraines don't produce that. He's a migraine specialist, so I trust him on that.
Ka-Ching. The PA student looked at me with a smirk. I think she must get tired of this guy. My mom was pretty happy and I was, too.
He said he certainly wasn't going to disagree with the experts and would defer to them. If I needed anything at all I should feel free to have him called. Well done.
After I settled in well, I called my dear, dear friend Quix, whom I always call when I'm in the hospital. She was kind enough to talk at length with me and was very reassuring, as she always is. She is my touchstone. Thank you, Quix.
I finished my third 1000 mg solu-Medrol dose today at 3:00 and my family picked me up to take me home for a Mother's Day BBQ. They all had cleaned the entire house after I had been sleeping all last week and made a wonderful dinner. My son's girlfriend is on her way with a little gift for me.
The BEST thing is that my husband is coming around. He's asking lots of questions about MS and is accepting of the walker I came home with. He asked the docs about MS. They said that they couldn't diagnose me with anything now, but would like to see me get another MRI in 6 months. My hubby then asked if he could just keep going on bringing me in for an "oil change" every 3 months. They chuckled politely and said No. We have to find a diagnosis. ER doc made sense to them.
Ee Haw.
Feeling stronger. Sending Love. Happy Mother's Day.
Momzilla*
Well hello! I have wondered where you were. I am not on here often any more. It sounds like you are making some progress but you have gone through too much.
I hope what ever you are dealing with with show itself SOON.
LA
I hope what ever you are dealing with with show itself SOON.
LA
From someone who's heard the words "complicated migraines" and "complex migraines" a hundred times or more I can certainly empathize with you. At least you got somebody's attention along with some treatment.
Hope you're feeling better soon! And better yet, get a real dx.
Ren
Hope you're feeling better soon! And better yet, get a real dx.
Ren
All I can say is WOW...did you catch them on a good day or what? I hope that this care for you continues and isn't just a stab in the dark that will be forgotten when they can't find an answer for you...it's time they really took this all seriously! Keep us informed as to how things are going and I am glad you have "friends" in high places so that you get the care you deserve!
Lots of Hugs,
Rena
Lots of Hugs,
Rena
Even though I hate hearing that you're having a relapse, I'm glad your at least getting medicine this time. It sounds like they are finally noticing..can't argue with that!
I had to giggle when I read about you putting that doctor in his place. That would have been priceless to see. He's not as smart as he thinks he is...LOL. I'm also glad that the evil neuro woke up on the right side of the cage that morning. You must have gotten her on a good day. Maybe she ate another patient prior to seeing you and her belly was nice and full, so that's why she was thinking clearly this time.
Well, with all joking aside, I hope so much for you and I feel like this is something that is finally giving those doctors to look at and take notice. It's about time, I say! How many times you have gone through this scenario, and came up with no answers or no doctors even given a glance. They can't argue with facts and evidence, and you are building your evidence.
I'm the type that believes everything (good and bad) happens for a reason. It's funny how you had so many people pulling their weight around to get you where you needed to be. Your job and the peoples lives you have touch help you in this scenario, I do believe.
Zilla, hang in there and you know where I'm at if you need anything. Same time..same channels...still occasionally wearing those sx stockings. lol
Love Ya
I had to giggle when I read about you putting that doctor in his place. That would have been priceless to see. He's not as smart as he thinks he is...LOL. I'm also glad that the evil neuro woke up on the right side of the cage that morning. You must have gotten her on a good day. Maybe she ate another patient prior to seeing you and her belly was nice and full, so that's why she was thinking clearly this time.
Well, with all joking aside, I hope so much for you and I feel like this is something that is finally giving those doctors to look at and take notice. It's about time, I say! How many times you have gone through this scenario, and came up with no answers or no doctors even given a glance. They can't argue with facts and evidence, and you are building your evidence.
I'm the type that believes everything (good and bad) happens for a reason. It's funny how you had so many people pulling their weight around to get you where you needed to be. Your job and the peoples lives you have touch help you in this scenario, I do believe.
Zilla, hang in there and you know where I'm at if you need anything. Same time..same channels...still occasionally wearing those sx stockings. lol
Love Ya
Praise God. I'm so glad you were led to the new job. Sounds like you work with a great bunch. Love to you, Amy
My precious Zill...it pains me (and I know it does for you too) that you continually go through these episodes without real answers. I don't pray that you have MS, I pray that SOMETHING will show up in your testing that will smack the doctors in the face. Something that will finally tell them what is going on and how to treat it.
You know I love you more than my luggage, Zill. And thats ALOT, cause my luggage is burgundy, my favorite color...(gosh I hope you are laughing) You have given so much to this Forum for so long and I hope that we can now be there for you, precious one.
I send you all my love and hope that you will post more often. Let me know how the walker goes.
Heather
You know I love you more than my luggage, Zill. And thats ALOT, cause my luggage is burgundy, my favorite color...(gosh I hope you are laughing) You have given so much to this Forum for so long and I hope that we can now be there for you, precious one.
I send you all my love and hope that you will post more often. Let me know how the walker goes.
Heather
Hi Zilla Cakes,
They treated you as you deserved, friend.
Sorry you are still in this space, but grateful those around you truly care this time and are willing to work on your behalf.
Nice to see you. Were you able to get anytime off to recoup at all?
Love,
Shell
They treated you as you deserved, friend.
Sorry you are still in this space, but grateful those around you truly care this time and are willing to work on your behalf.
Nice to see you. Were you able to get anytime off to recoup at all?
Love,
Shell
We haven't met. I'm new to this forum, but not the neurological dx process. (It started for me 7 years ago after the birth of my second child.)
I just wanted to say I'm glad you might be getting to the bottom of this. I've also been told "complicated migraine" but, like you, it doesn't make sense as a dx. I hope that the SoluMedrol helps and you're feeling better soon.
Stephanie
I just wanted to say I'm glad you might be getting to the bottom of this. I've also been told "complicated migraine" but, like you, it doesn't make sense as a dx. I hope that the SoluMedrol helps and you're feeling better soon.
Stephanie
Hi there, sorrry about your relapse, but OH MY, it has been a productive weekend.
I'm glad that the Solu-Medrol is helping, and that the ER doc was a peach, and your co-workers were sweet, and your family is wonderful.
You know this family loves you too!
Love and Hugs,
Kathy
I'm glad that the Solu-Medrol is helping, and that the ER doc was a peach, and your co-workers were sweet, and your family is wonderful.
You know this family loves you too!
Love and Hugs,
Kathy
Hey Momma Z,
Thanks for updating us. Sounds like it has been a pretty rocky time for you. I am glad the evil cruel female partner stepped over to the other side of human-ness! I do hope the Solu medrul works for you. YEAH for hubby coming around. Another yeah for coming home to a clean house :) Happy Mother's day!
Janette
Thanks for updating us. Sounds like it has been a pretty rocky time for you. I am glad the evil cruel female partner stepped over to the other side of human-ness! I do hope the Solu medrul works for you. YEAH for hubby coming around. Another yeah for coming home to a clean house :) Happy Mother's day!
Janette
Zill,
I read your experience with my mind too tired to really put everything together, except I know you sound better. You are so calm with pushing these doctors forward - keep it up.
Here's hoping that you really are a step or two closer to a dx and that the solumedrol works its magic for your again.
I'm glad you were home for Mother's Day - and a clean house sounds great as a bonus.
Feel better and stay in touch,
Lu
I read your experience with my mind too tired to really put everything together, except I know you sound better. You are so calm with pushing these doctors forward - keep it up.
Here's hoping that you really are a step or two closer to a dx and that the solumedrol works its magic for your again.
I'm glad you were home for Mother's Day - and a clean house sounds great as a bonus.
Feel better and stay in touch,
Lu
Hi Zil,
Well, first off, I'm sorry you had to go through this again, but so happy you have finally found a dr who is determined to find that dx!!
You hang in there sweet friend, and I hope to be hearing you have that dx in the near future!
Happy Mother's Day!!
Love & Hugs,
doni
Well, first off, I'm sorry you had to go through this again, but so happy you have finally found a dr who is determined to find that dx!!
You hang in there sweet friend, and I hope to be hearing you have that dx in the near future!
Happy Mother's Day!!
Love & Hugs,
doni
Momzilla- I've got to say, I just cheered. I mean, you having a replapse is stinky. Just stinky, But that ER doc is amazing!!!! Just amazing!!! Lovely! And anything else wonderful that comes to mind. I WISH I couldve kissed him for you!! :) This is just one more stepping stone in the right direction. Hang in there! :)
~Sunnytoday~
~Sunnytoday~
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