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Old 07-13-2008, 10:11 PM   #31
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Re: new MS specialist

Quote:
Originally Posted by Wallis86 View Post
when I was 11, I had three distinct episodes of mononucleosis, exactly 10 years before the really significant disability started in my life from progressive neurological problems. Very thought provoking...
3 episodes? Wow. That's horrible. I only ever had Mono 1 time, at age 19. It knocked me on my butt for 2 weeks solid. I could get up and walk around for 30 min a day. That was it. I was otherwise bed ridden and on Tylenol 3 for the pain. I thought nothing could be worse than that pain, until I had my headache after my lumbar puncture during my MS diagnosis.
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Old 07-14-2008, 03:50 AM   #32
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Re: new MS specialist

OH yes, I know the spinal headache better than I can explain. after having the mono and then pneumonia and a killer flu for 3 weeks with fevers of 104, I had my first LP. It didn't heal. For 3.5 months. Despite 2 blood patches. I had to stay completely on my back for the whole time, including eating. I had to be homeschooled and nearly didn't move onto the next grade. The doctors thought I was faking the spinal headaches since it had ben so long until finally someone decided "hey, lets do a lumbar MRI!" and after 3.5 months they saw the leak and fixed it with a fibrin patch. That experience is why I have yet to have an LP for my MS diagnosis, because doctors don't want to do it. Spinal headaches are the worst pain known to man, literally. I'm going to have an LP soon I think and I've never been more scared for a routine procedure in my life!

 
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Old 07-14-2008, 07:04 AM   #33
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Re: new MS specialist

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Originally Posted by Wallis86 View Post
OH yes, I know the spinal headache better than I can explain. after having the mono and then pneumonia and a killer flu for 3 weeks with fevers of 104, I had my first LP. It didn't heal. For 3.5 months. Despite 2 blood patches. I had to stay completely on my back for the whole time, including eating. I had to be homeschooled and nearly didn't move onto the next grade. The doctors thought I was faking the spinal headaches since it had ben so long until finally someone decided "hey, lets do a lumbar MRI!" and after 3.5 months they saw the leak and fixed it with a fibrin patch. That experience is why I have yet to have an LP for my MS diagnosis, because doctors don't want to do it. Spinal headaches are the worst pain known to man, literally. I'm going to have an LP soon I think and I've never been more scared for a routine procedure in my life!
That's a lot to go through . And I can imagine your fears now about having another LP done.

I've heard Trigeminal Neuralgia explained as the 'worst pain known to man'. I was first dx'ed with TN and I have had the stabbing searing pain down 1 side of my face before, and the headache with it, but nothing comes close to the pain I felt from the spinal headache. Shudder.

In any event, I'd still do another LP in my case, but where you had so many other complications with your's, I can understand the hesitation.
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Old 07-14-2008, 07:24 AM   #34
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Re: new MS specialist

At this point, I'm not really the one hesitating. The neuro was. I mean, I'm scared of it, but I know its necessary AND I know how to fix a leak if it happens. I just need to skip the blood patches entirely and go right for a fibrin patch... and no messing around with allowing people to tell me to wait it out. I've decided that more than 24 hours of a spinal headache, I'm getting a fibrin patch.

Isn't it amazing that we deal with so much pain in our daily lives, but give me a headache and I am COMPLETELY incapacitated, spinal headache aside. A regular old headache makes me want to curl up and die!

 
Old 07-14-2008, 08:18 AM   #35
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Re: new MS specialist

Wallis, if you ask some neuros, MS doesn't cause pain.

Silly huh? Yes.

Thankfully I have a neuro who is completely understanding, thorough, and does listen and help treat the pain.

Speaking of headaches however... it's raining today, and due to the pressure change (had been beautiful and sunny all along) I have a bit of a headache. Nothing that's going to put me out of commission thankfully. Pop back a couple tylenol and cross the fingers.
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Old 07-14-2008, 03:15 PM   #36
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Re: new MS specialist

I've had a headache since Thursday--it's not bad at all, but it's getting to the point where I want to tear all my hair out!

Wallis, did you get an appt?
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Old 07-14-2008, 06:57 PM   #37
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Re: new MS specialist

Oh yes, I KNEW there was a reason why I came on the boards a few hours ago! Yet, unsurprisingly, I forgot to do what I came on for. I got an appointment shockingly soon! I have one on Thursday! I was really productive this morning actually, and made lots of appointments including thoracic MRI and the NO, and got all of my MRIs and records faxed to the MS specialist. And I'm trying to get into the service dog organization in a couple of days for the tour.

 
Old 07-14-2008, 07:01 PM   #38
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Re: new MS specialist

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Oh yes, I KNEW there was a reason why I came on the boards a few hours ago!
Wow, sounds like the day I've been having. I went downstairs to check my mailbox, which involves unlocking with a key, and I forgot the key upstairs.

I'd already been downstairs, thought crap I need my key, went up FOR the key specifically, and back down I went without it LOL.

Congrats on all the appointments! That was fast. You'll have to let us know how things go. Crossing everything for you!
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Old 07-14-2008, 07:22 PM   #39
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Re: new MS specialist

Yes, I have those moments FAR more than I'd like to admit. I have funny ones with my low blood sugar sometimes too! Today I tried to put the orange juice in the cupboard. And I've walked into the bathroom looking for something to eat many times when I am low. I wish I could blame it all on low blood sugar but its usually just cognitive impairment from whatever is going on with me! I will keep everyone posted with my doctor progress. I was pleased to discover the MS specialist I'm seeing is a woman! I never get female doctors. And she has clinical interests in neuroimmunology, which is definitely a good thing for me.

 
Old 07-14-2008, 08:23 PM   #40
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Re: new MS specialist

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Originally Posted by Wallis86 View Post
Yes, I have those moments FAR more than I'd like to admit. I have funny ones with my low blood sugar sometimes too! Today I tried to put the orange juice in the cupboard. And I've walked into the bathroom looking for something to eat many times when I am low. I wish I could blame it all on low blood sugar but its usually just cognitive impairment from whatever is going on with me! I will keep everyone posted with my doctor progress. I was pleased to discover the MS specialist I'm seeing is a woman! I never get female doctors. And she has clinical interests in neuroimmunology, which is definitely a good thing for me.
Definitely good!

I was so thrilled when my GP ended up being a female as well, much older woman who spends a lot of time in the hospital, so she's quite knowledgeable.

My neuro's male, and he's just an incredible person. He looked at me and said out of the blue, "You know, you're a bit grunge". I laughed really hard (I was wearing socks and sandals) and said, "You want to see grunge? I'll bring photos from when I was a teenager!".
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Last edited by Nenu; 07-14-2008 at 08:24 PM.

 
Old 07-15-2008, 03:34 PM   #41
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Re: new MS specialist

Thursday, Woo Hoo! Let us know how it goes. I'm so glad you got in so fast!
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Old 07-15-2008, 03:48 PM   #42
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Re: new MS specialist

Wallis, that's great! And a degree in neuro-immunology to boot! THAT is double-great! You mentioned the NO -- did you make the appointment to see Dr. M. as well? It sounds like you've had a very productive week indeed -- and it's only Tuesday!

 
Old 07-15-2008, 04:24 PM   #43
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Re: new MS specialist

Thursday huh?? Bring it on.. Wallis good luck. hope this ones a keeper.
Not many woman Neuros i know here. All my Doctors and Neuros are male.. terrific and thorough at least.

 
Old 07-15-2008, 07:42 PM   #44
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Re: new MS specialist

Yep, I have an appointment with Dr. M on thursday! THat was much quicker than I anticipated. I really wanted to get copies of brain scans from years ago, but I'm so bad with my memory, I can't recall when or where I had brain scans done... unfortunately that only leaves me with feb and may of this year. Not much to go by. I hope my eyes get figured out, they are hurting me today. And thanks to my dad: he mentioned today that its been a few days since any major seizures, and now I'm lying in bed and I can definitely feel one coming on. It's murphy's law. I'll keep everyone posted!

 
Old 07-15-2008, 09:38 PM   #45
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Re: new MS specialist

Wallis,

We will all be thinking of you and your appointment on Thursday. Get some rest on wednesday and keep us posted. I'm glad you got in so quickly.

MommaEMS

 
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