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Tiring again
Nov 05, 2009 12:00AM
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This is getting really old.
Neuro's nurse has been playing messenger girl, as I ask questions, she has to wait until she can talk to him, and then she calls me back with some answer that raises more questions than it answers.
LP had high albumin content, but nothing else outside normal ranges. What does that mean? "Nothing," was the reply I received.
Still seeing double, still having some eye pain now and then, still have the hazy patch in the upper right portion of my field of view, and still can't tell up from sideways with my eyes closed. My world keeps rockin', in other words. So do I, in fact, and my hands and my head shake. Sometimes a finger will shake like a hummingbird's wing.
He wants me to go back to the neuro-ophthalmologist, and to follow up with him in May (Yes, MAY!) including an updated MRI (last one was January '09, the one before that was August of '97, with no suspicion of MS at that time, so God only knows what protocol they followed. It was on actual film.).
Gave the nurse a piece of my mind. Bad choice of words. She's a very nice young lady (named Sarah, my mother's name, and today would've been Mom's 85th birthday). Told her I was not one to sit back and do nothing while I waited to see how bad it would get. Told her I wanted to know if he is putting any stock in the "atypical migraine" theory, if he thinks I'm nuts (reminded her that the neuro-psych doc said otherwise), and is it possible that there is some test, any test, that we could try to see if we get anywhere, or any medication I could research to see if it is safe before I try it to see if it just makes me worse like nearly all the others have?
Mostly, just tired of it all. Very tired.
Neuro's nurse has been playing messenger girl, as I ask questions, she has to wait until she can talk to him, and then she calls me back with some answer that raises more questions than it answers.
LP had high albumin content, but nothing else outside normal ranges. What does that mean? "Nothing," was the reply I received.
Still seeing double, still having some eye pain now and then, still have the hazy patch in the upper right portion of my field of view, and still can't tell up from sideways with my eyes closed. My world keeps rockin', in other words. So do I, in fact, and my hands and my head shake. Sometimes a finger will shake like a hummingbird's wing.
He wants me to go back to the neuro-ophthalmologist, and to follow up with him in May (Yes, MAY!) including an updated MRI (last one was January '09, the one before that was August of '97, with no suspicion of MS at that time, so God only knows what protocol they followed. It was on actual film.).
Gave the nurse a piece of my mind. Bad choice of words. She's a very nice young lady (named Sarah, my mother's name, and today would've been Mom's 85th birthday). Told her I was not one to sit back and do nothing while I waited to see how bad it would get. Told her I wanted to know if he is putting any stock in the "atypical migraine" theory, if he thinks I'm nuts (reminded her that the neuro-psych doc said otherwise), and is it possible that there is some test, any test, that we could try to see if we get anywhere, or any medication I could research to see if it is safe before I try it to see if it just makes me worse like nearly all the others have?
Mostly, just tired of it all. Very tired.
Voice mail from Sarah while I was on my way to get hearing aid batteries basically said we're gonna wait until May. No new tests, drugs, or theories. He concurs that this "could possibly be" atypical migraine; she didn't seem to suggest that was his primary perception, but it's a maybe. In May we'll do a repeat MRI and see where we are.
Pastor Dan,
I don't think you believe that "atypical migraine" theory, anymore than I do. I DO think that waiting till May to do any more tests may actually be a relief for you. Take a break from all the doctor's and testing for awhile. Sometimes I just dread seeing any doctor's again and again, even though I do have a diagnosis of MS.
I just had a Neuro appt. 4 weeks ago and have to go back again next week to discuss something for this crushing fatigue. Provigil. I swear Dan, I think I could sleep for 20 hours straight.
Try to enjoy your new wife and hang in there with everything else that is going on. I will certainly pray for God to give you strength to continue forward. You can't give up on finding a diagnosis though. It's got to be there...I already have my theories, but I am suppose to keep my opinions to myself and not play doctor.
Hang in there dear man. You have alot of people pulling and praying for you.
God Bless you in every way possible. Big Forum Hugs to you and Nancy.
Heather
I don't think you believe that "atypical migraine" theory, anymore than I do. I DO think that waiting till May to do any more tests may actually be a relief for you. Take a break from all the doctor's and testing for awhile. Sometimes I just dread seeing any doctor's again and again, even though I do have a diagnosis of MS.
I just had a Neuro appt. 4 weeks ago and have to go back again next week to discuss something for this crushing fatigue. Provigil. I swear Dan, I think I could sleep for 20 hours straight.
Try to enjoy your new wife and hang in there with everything else that is going on. I will certainly pray for God to give you strength to continue forward. You can't give up on finding a diagnosis though. It's got to be there...I already have my theories, but I am suppose to keep my opinions to myself and not play doctor.
Hang in there dear man. You have alot of people pulling and praying for you.
God Bless you in every way possible. Big Forum Hugs to you and Nancy.
Heather
ok, i am basically asleep at the wheel. so forgive any stupid questions...lol
If it is atypical migraine what does that mean for you? Treatment? Symptoms?
any answers to these questions or just more questions?
If it is atypical migraine what does that mean for you? Treatment? Symptoms?
any answers to these questions or just more questions?
Symptoms are as they've always been. Very bad balance, visual disturbance, really severe eye pain, tremors worsening, vibrating sensations, sometimes actual vibrating (fibrillating) muscles, frequent fatigue (20 hours straight, Heather? That might be a good start!), some bladder issues. I know I'm forgetting something. Treatment has included a drawer full of drugs, all of which made matters worse. The fine print on some of them taught me to read all the fine print before taking anything; two of them should never have been prescribed for me. Only Neurontin has helped, with the eye pain. Been through vestibular rehab, too, to no avail.
We do appreciate those prayers. I know for a fact that prayer changes things.
Terry, the only questions that are stupid are the ones we should've asked but thought we shouldn't so we didn't.
We do appreciate those prayers. I know for a fact that prayer changes things.
Terry, the only questions that are stupid are the ones we should've asked but thought we shouldn't so we didn't.
If it's atypical migriane , does your MRI support this diagnosis meaning you do not have any lesions that look demyelinating?
I was told I have atypical migraine as well. I had an episode of double vision that occurred out of nowhere while I was driving. Immediate MRI showed nothing and it was chalked up to migraine. My dizziness and vertigo has bee chalked up to atypical migriane, along with left arm and face numbness and tingling. I totally understand how truly frustating this is. Have been there and done that.
What got me out of just the atypical migraine dx was a neuro who was confident and experienced enough to call it what it is...MS AND atypical migraine. The difference in the symtpoms is nausea and occasionaly an aura.
I do wish you luck as you try to unravel this medical mystery. Perhaps your neuro-opthalmlogost will have some insight or will order another MRI. And, if they can't seem to find a dx , I hope they certainly treat your symtoms. BTW, NONE of the typical migraine meds comes close to tocuhing my migraine symtpoms, what about you? Do migraine meds work for you?
Sending my best,
Ren
I was told I have atypical migraine as well. I had an episode of double vision that occurred out of nowhere while I was driving. Immediate MRI showed nothing and it was chalked up to migraine. My dizziness and vertigo has bee chalked up to atypical migriane, along with left arm and face numbness and tingling. I totally understand how truly frustating this is. Have been there and done that.
What got me out of just the atypical migraine dx was a neuro who was confident and experienced enough to call it what it is...MS AND atypical migraine. The difference in the symtpoms is nausea and occasionaly an aura.
I do wish you luck as you try to unravel this medical mystery. Perhaps your neuro-opthalmlogost will have some insight or will order another MRI. And, if they can't seem to find a dx , I hope they certainly treat your symtoms. BTW, NONE of the typical migraine meds comes close to tocuhing my migraine symtpoms, what about you? Do migraine meds work for you?
Sending my best,
Ren
Imitrex did nothing, then I found that it shouldn't have ever been prescribed for me for several reasons (family and personal health history as well as drug interaction concerns). Topamax was also prescribed, against label warnings, but I didn't try it due to my long and complicated (and very, very painful) kidney stone history. Depakote did nothing. Again, label warnings weren't heeded, but I survived all right. Amitriptyline had no noticeable effect except to cause sleepiness. Klonopin was prescribed for a short time; its' only effect was also sleepiness, and reading up on it again tonight, I have to ask myself why it was prescribed in the first place. I had transdermal scopolamine, even though I wasn't really nauseous. I had a queasy feeling due to the aparrent spinning and tumbling of the world around me. Scopolamine might've impacted that slightly, but I think it made me more dizzy. That's been a while now, so I'm going from memory, which is increasingly of debatable wisdom. Meclizine before that did much the same.
MRI report showed "four punctate-to-small T2 hyperintensities in the deep and subcortical white matter." Nothing noted about enhancement with gadolinium, which was tried. Nothing in the report about anything on the FLAIR sequence images.
Thank you all for your advice and encouragement. Shucks, I'll even thank you for theories. ;>)
MRI report showed "four punctate-to-small T2 hyperintensities in the deep and subcortical white matter." Nothing noted about enhancement with gadolinium, which was tried. Nothing in the report about anything on the FLAIR sequence images.
Thank you all for your advice and encouragement. Shucks, I'll even thank you for theories. ;>)
As for Klonopin, I take it for muscle spasms, yes it makes you sleepy but that's why I take it at night. When I weaned off my meds for my vertigo tests this was one of them. My vertigo increased meaning that it was helping on some level. Went to my PCP who admits to knowing next to nothing about MS but called a neuro and was told to try valium for the vertigo. He didn't because I was already taking klonopin...same drug class just different half-life. He/they then decided on antivert/meclizine which did absolutely nothing. It doesn't affect central vertigo according to my wacky neuro-otologist. So, after the testing I had an Ativan (fast acting benzo-same class as klonopin) and took it . Relieved at least 75% of the vertigo within an hour.
I would re-visit the Klonopin. It has a LONG half-life. I no longer feel drugged when I use it and it does wonders for the spasms and apparently the vertigo.
Remember that I only 2 "possible" spots of interest on my MRI but after all the mimics were ruled out MS won. But, then I did go to 4 different neuros. The one with guts to call a duck a duck was my current neuro who used to run the MS center in Albany, NY. He is older (60s) and remembers when MS wasn't used in the dx. Maybe try an older neuro?????
Still wishing and praying for an answer for you.
Ren
I would re-visit the Klonopin. It has a LONG half-life. I no longer feel drugged when I use it and it does wonders for the spasms and apparently the vertigo.
Remember that I only 2 "possible" spots of interest on my MRI but after all the mimics were ruled out MS won. But, then I did go to 4 different neuros. The one with guts to call a duck a duck was my current neuro who used to run the MS center in Albany, NY. He is older (60s) and remembers when MS wasn't used in the dx. Maybe try an older neuro?????
Still wishing and praying for an answer for you.
Ren
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