Aa
OK, all you Smarty Pants
Well~
I can tell from all the PMs I got that no one is fooled by my post before about the migraine diagnosis. I think I was the only one. I don't know what to say...
I appreciate everyone's concern. I know I sound gloomy because I am. I really thought I would get a better answer.
At first, I thought, Well, if all these neurologists think there is NO way I have MS, I just can't have it. And maybe I don't. There is nothing that has shown up in testing yet that would indicate MS. Nada. Zilch. Nary a lesion, nary a prolonged F wave or whatever....
But, I have been looking around, and I just can't buy this "migraine" thing, either. If my acute attack was caused by some kind of migraine, it would have to have been a hemiplegic type, because that is the only type which causes true motor weakness. Which was most certainly documented over and again at the hospital. I have looked into the hemiplegic type of migraine (which is very, very rare). My episode doesn't really fit. And if it doesn't fit something that is SO very rare, I just don't think you can make it fit.
Hemiplegic migraines DO cause true motor weakness. It CAN last a week, but RARELY does. It's not lost on me that the reason I am having such a hard time getting a Dx is because I don't fit the mold, but I don't think it's this one. Hemiplegic Migraine (HM) is usually mistaken for stroke, because of slurred speech and paralysis or severe weakness on one side of the body. No one thought I was having a stroke, although they did try to rule that out when I got to the hospital. They thought I was having an acute MS relapse. My speech was not affected. On every forum I have peeked at (and promptly left!) the HM patient had affected speech. Slurred speech was a big symptom. Something this rare wouldn't logically have variants, I wouldn't think. Correct me if that doesn't seem right.
Also, ONE side of the body is affected. During my "episode'" my left side WAS most affected. My left leg was VERY weak, my right arm was weak, and the left side of my face drooped. And the whole left side was tingling and was intermittently numb. BUT, my RIGHT leg was definitely weak, too. When I got to the hospital, and even the next morning, when they tested my limb strength, they didn't even give resistance. In other words, I was too weak to resist a doc or nurse pushing down on my legs. They just had me try to lift my legs off the gurney, and then hospital bed. Later, the next day, they gave me resistance and rated my strength in a standard fashion. Everyone said I had weakness on the right. Significant weakness. THat doesn't fit with HM.
And the timing isn't right. I had a MILD menstrual migraine each day for a few days, for a few hours. More nausea than headache, and it wasn't a pulsating headache like I've had in the past with migraines. THe nausea and "eye headache" is what was ailing me. After I took a new medication, I think I felt better. A few hours later, I tried to cross my legs at work, and couldn't lift my leg. THis is sort of the opposite of what I've read about HMs. It seems like when the aura is active, so is the weakness. When the headache comes, the weakness goes away. I didn't have ANY aura. I've had visual and "wierd, strange feeling" auras before. I had NONE this time, and have had none in a few years.
I have read and doctors have told me that it is very suspicious to have adult onset migraines after the age of 40. You have to investigate and make sure there is no reason for them. It is more normal to have them first in childhood, adolescence and early adulthood. NOT after age 40. I had my first "complex" migraine at age 41. Something's fishy. I don't mean to be dramatic, but I feel it is. Something's wrong with me, and I don't think it's HM. I'm sorry. Shoot me.
It's not that I won't be satisfied until I'm diagnosed with MS. Truly. I am even doubting it's MS, with all the negative results. But....it's not HM, either, I don't think.
Thanks for your concern, everyone. Sorry I'm so grumpy. I am grumpily getting on with my life, still. Feel well,
Zilla*
I may be grasping at straws here.
I can tell from all the PMs I got that no one is fooled by my post before about the migraine diagnosis. I think I was the only one. I don't know what to say...
I appreciate everyone's concern. I know I sound gloomy because I am. I really thought I would get a better answer.
At first, I thought, Well, if all these neurologists think there is NO way I have MS, I just can't have it. And maybe I don't. There is nothing that has shown up in testing yet that would indicate MS. Nada. Zilch. Nary a lesion, nary a prolonged F wave or whatever....
But, I have been looking around, and I just can't buy this "migraine" thing, either. If my acute attack was caused by some kind of migraine, it would have to have been a hemiplegic type, because that is the only type which causes true motor weakness. Which was most certainly documented over and again at the hospital. I have looked into the hemiplegic type of migraine (which is very, very rare). My episode doesn't really fit. And if it doesn't fit something that is SO very rare, I just don't think you can make it fit.
Hemiplegic migraines DO cause true motor weakness. It CAN last a week, but RARELY does. It's not lost on me that the reason I am having such a hard time getting a Dx is because I don't fit the mold, but I don't think it's this one. Hemiplegic Migraine (HM) is usually mistaken for stroke, because of slurred speech and paralysis or severe weakness on one side of the body. No one thought I was having a stroke, although they did try to rule that out when I got to the hospital. They thought I was having an acute MS relapse. My speech was not affected. On every forum I have peeked at (and promptly left!) the HM patient had affected speech. Slurred speech was a big symptom. Something this rare wouldn't logically have variants, I wouldn't think. Correct me if that doesn't seem right.
Also, ONE side of the body is affected. During my "episode'" my left side WAS most affected. My left leg was VERY weak, my right arm was weak, and the left side of my face drooped. And the whole left side was tingling and was intermittently numb. BUT, my RIGHT leg was definitely weak, too. When I got to the hospital, and even the next morning, when they tested my limb strength, they didn't even give resistance. In other words, I was too weak to resist a doc or nurse pushing down on my legs. They just had me try to lift my legs off the gurney, and then hospital bed. Later, the next day, they gave me resistance and rated my strength in a standard fashion. Everyone said I had weakness on the right. Significant weakness. THat doesn't fit with HM.
And the timing isn't right. I had a MILD menstrual migraine each day for a few days, for a few hours. More nausea than headache, and it wasn't a pulsating headache like I've had in the past with migraines. THe nausea and "eye headache" is what was ailing me. After I took a new medication, I think I felt better. A few hours later, I tried to cross my legs at work, and couldn't lift my leg. THis is sort of the opposite of what I've read about HMs. It seems like when the aura is active, so is the weakness. When the headache comes, the weakness goes away. I didn't have ANY aura. I've had visual and "wierd, strange feeling" auras before. I had NONE this time, and have had none in a few years.
I have read and doctors have told me that it is very suspicious to have adult onset migraines after the age of 40. You have to investigate and make sure there is no reason for them. It is more normal to have them first in childhood, adolescence and early adulthood. NOT after age 40. I had my first "complex" migraine at age 41. Something's fishy. I don't mean to be dramatic, but I feel it is. Something's wrong with me, and I don't think it's HM. I'm sorry. Shoot me.
It's not that I won't be satisfied until I'm diagnosed with MS. Truly. I am even doubting it's MS, with all the negative results. But....it's not HM, either, I don't think.
Thanks for your concern, everyone. Sorry I'm so grumpy. I am grumpily getting on with my life, still. Feel well,
Zilla*
I may be grasping at straws here.
I have been give that "Diagnosis of last resort" also. It is just too convenient because it isn't anything urgent and can explain away some pretty severe symptoms at the same time. I bet your doctor didn't think it was necessary to do the genetic testing to prove this diagnosis either, mine didn't. He thought that my current migraine meds were just great too-lol!
When I read your first post, I had a rush of emotions. I know that I had to take a break after hearing the FHM diagnosis, and I figured that you had hit a wall and were just plain worn out from the fight. It is so agonizing to have severe symptoms and have no diagnosis to explain them. This of course not only affects you, but your family, co-workers, & friends. They really have no way of knowing how it feels to be you and although the hemiplegic migraine diagnosis might bring some relief to them, it just doesn't get you on any "road to recovery".
I am really glad that you posted this response because I do believe that there is an answer out there for you. I was just worried that if you stopped looking, you might not find it!!
Be Well,
Stacey
When I read your first post, I had a rush of emotions. I know that I had to take a break after hearing the FHM diagnosis, and I figured that you had hit a wall and were just plain worn out from the fight. It is so agonizing to have severe symptoms and have no diagnosis to explain them. This of course not only affects you, but your family, co-workers, & friends. They really have no way of knowing how it feels to be you and although the hemiplegic migraine diagnosis might bring some relief to them, it just doesn't get you on any "road to recovery".
I am really glad that you posted this response because I do believe that there is an answer out there for you. I was just worried that if you stopped looking, you might not find it!!
Be Well,
Stacey
Here is an interesting answer recently from the CCF Neuro on the Dr/Pt Neuro Forum. She is discussing neuro symptoms suggestive of MS:
"In most cases of MS, there are abnormalities apparent on MRI, however not all MRI's are created equal and sometimes, subtle abnormalites may not be appreciated by radiologists who do not specialize in neuroradiology. There are particular MRI sequences and protocols that are also useful in looking for brain lesions characterisitic of MS. Additionally, if there is clinical suspicion for MS and the MRI is unhelpful, a lumbar puncture may be necessary to help clinch the diagnosis. "
So, we have an expert discussing your very situation. Note that she is not at all saying that a negative MRI is the end answer.
Q
"In most cases of MS, there are abnormalities apparent on MRI, however not all MRI's are created equal and sometimes, subtle abnormalites may not be appreciated by radiologists who do not specialize in neuroradiology. There are particular MRI sequences and protocols that are also useful in looking for brain lesions characterisitic of MS. Additionally, if there is clinical suspicion for MS and the MRI is unhelpful, a lumbar puncture may be necessary to help clinch the diagnosis. "
So, we have an expert discussing your very situation. Note that she is not at all saying that a negative MRI is the end answer.
Q
ZILLA,
FOLLOW YOUR HEAD TO PER SE, IF IT DOESN'T FIT , DON'T EXCEPT IT.
MY T3 MRI WAS CLEAR EXCEPT FOR BRAIN SHRINKAGE, T4 WAS THEIR PROOF !!!!
LESIONS CAN BE DEEP IN THE WHITE MATTER AND THE GREY MATTER, WHEN THEY ARE DEEP,NOT ALL MRI MACHINES DETECT EVERYTHING.
MY FIRST VEP, APRIL 2006 WAS NORMAL, VEP NOVEMBER 2007 ABNORMAL BOTH EYES.
POINT BEING,JUST CAUSE IT ISN'T THERE TODAY MAYBE TOMORROW IT WILL BE.
ITS NORMAL TO FEEL THE WAY YOU DO.
YOUR HOSPITAL VISIT WAS DOCUMENTED, THE SOLU-MEDROL SEEMED TO BE EFFECTIVE ON YOUR SYMPTOMS.THIS YOU NEED TO REMIND THE NEURO.
SENDING YA HUGS AND PRAYERS.
T-LYNN
FOLLOW YOUR HEAD TO PER SE, IF IT DOESN'T FIT , DON'T EXCEPT IT.
MY T3 MRI WAS CLEAR EXCEPT FOR BRAIN SHRINKAGE, T4 WAS THEIR PROOF !!!!
LESIONS CAN BE DEEP IN THE WHITE MATTER AND THE GREY MATTER, WHEN THEY ARE DEEP,NOT ALL MRI MACHINES DETECT EVERYTHING.
MY FIRST VEP, APRIL 2006 WAS NORMAL, VEP NOVEMBER 2007 ABNORMAL BOTH EYES.
POINT BEING,JUST CAUSE IT ISN'T THERE TODAY MAYBE TOMORROW IT WILL BE.
ITS NORMAL TO FEEL THE WAY YOU DO.
YOUR HOSPITAL VISIT WAS DOCUMENTED, THE SOLU-MEDROL SEEMED TO BE EFFECTIVE ON YOUR SYMPTOMS.THIS YOU NEED TO REMIND THE NEURO.
SENDING YA HUGS AND PRAYERS.
T-LYNN
My doctors have said that I have migraines which I think I have had a couple in my life time but as soon as I even said I had suffered from a migraine before they say I have a migraine problem. When I had that episode back in the late 90's, they did think I had a stroke but I had all over weakness it was just more on one side. Back then, they said it was either a seizure or a complex migraine but I never got a clear DX even though they put me on just a seizure medication because of the abnormal EEG.
I didn't tolerate the medication that well so I went off of it and never had a problem until last year. Back in 1998, I had a clean MRI. Now I don't. I wonder now if back in the late 90's has anything to do with what's going on with me now because of some of the same SX resurfacing. I haven't had a headache or a migraine since my hysterectomy in 2005. I don't know what's wrong with me besides needing a little SX therapy (inside joke hehe) but something has changed between now and then.
I went to my GP yesterday and we talked about all the health concerns I have, new and old. I told her I didn't want to pursue anything for awhile about my neurological stuff because of all the dead ends I've been running in to and I didn't feel like I should have to convince a neuro somethings wrong with me and be put on trial. I wanted her to take care of my needs until proof showed up so I didn't have to go through what I just recently went through.
She reminded me that lesions in MS will not show up sometimes right away on the MRI and that all the test aren't 100% in the beginning of the disease and that it could take years for things to show positive. I told her that most neuros that I have had experience with, act like if you don't show evidence right now then you don't have it. But everything else including the MS Society says and agrees with what she believes, just not these neuros.
She understood my frustration but talked me into seeing another neuro. I don't know if it's MS or something else I just want to know what it is so I can get treatment and get better. I know you want answers and you got something, but I'm not sure if I'm truly convinced it's migraines. To be honest, maybe it's my own distrust of doctors right now.
I've had loads of blood work just to see if I have problems with clotting issues several months ago. Everything was fine. What happened? I have blood clots so the test are not always 100% on what's going on. I just think you should have regular MRIs to see if anything changes. Especially, since you had this episode maybe you should have one 3-6 months afterwards because sometimes lesions don't show up until then. I'm sorry if I'm a downer. I care about you and I want you to find the answers and be fully happy with the DX.
Take Care
I didn't tolerate the medication that well so I went off of it and never had a problem until last year. Back in 1998, I had a clean MRI. Now I don't. I wonder now if back in the late 90's has anything to do with what's going on with me now because of some of the same SX resurfacing. I haven't had a headache or a migraine since my hysterectomy in 2005. I don't know what's wrong with me besides needing a little SX therapy (inside joke hehe) but something has changed between now and then.
I went to my GP yesterday and we talked about all the health concerns I have, new and old. I told her I didn't want to pursue anything for awhile about my neurological stuff because of all the dead ends I've been running in to and I didn't feel like I should have to convince a neuro somethings wrong with me and be put on trial. I wanted her to take care of my needs until proof showed up so I didn't have to go through what I just recently went through.
She reminded me that lesions in MS will not show up sometimes right away on the MRI and that all the test aren't 100% in the beginning of the disease and that it could take years for things to show positive. I told her that most neuros that I have had experience with, act like if you don't show evidence right now then you don't have it. But everything else including the MS Society says and agrees with what she believes, just not these neuros.
She understood my frustration but talked me into seeing another neuro. I don't know if it's MS or something else I just want to know what it is so I can get treatment and get better. I know you want answers and you got something, but I'm not sure if I'm truly convinced it's migraines. To be honest, maybe it's my own distrust of doctors right now.
I've had loads of blood work just to see if I have problems with clotting issues several months ago. Everything was fine. What happened? I have blood clots so the test are not always 100% on what's going on. I just think you should have regular MRIs to see if anything changes. Especially, since you had this episode maybe you should have one 3-6 months afterwards because sometimes lesions don't show up until then. I'm sorry if I'm a downer. I care about you and I want you to find the answers and be fully happy with the DX.
Take Care
Hi Z.
After the initial pronouncement of ms flair . we all felt a bit of relief for you .. FINALLY someone is taking notice .. It seemed unfair to have that taken away, what a let down.
But I thought OK , if she and her dh can live with this ( and your post was not convincing :) , sounded like hubby was so you'd go along for the ride :) ). See, your friends know you very well.... I was going to let you get away with it and have a little reprieve from all of this cr*p.. But better minds than mine called you on it .
LLWB has a good idea, go the the er doc who first saw you... see what comes of that .
Did I get it right that you don't see anyone , follow-up , for three months !!! That seems like a long time ... Who are these guys?? You need more attentive care . just my opinion.
Take care , are you grumpy , no frustrated, yes
Jo
PS You WILL be timed when you go to any other forum, This is just a friendly warning !!
After the initial pronouncement of ms flair . we all felt a bit of relief for you .. FINALLY someone is taking notice .. It seemed unfair to have that taken away, what a let down.
But I thought OK , if she and her dh can live with this ( and your post was not convincing :) , sounded like hubby was so you'd go along for the ride :) ). See, your friends know you very well.... I was going to let you get away with it and have a little reprieve from all of this cr*p.. But better minds than mine called you on it .
LLWB has a good idea, go the the er doc who first saw you... see what comes of that .
Did I get it right that you don't see anyone , follow-up , for three months !!! That seems like a long time ... Who are these guys?? You need more attentive care . just my opinion.
Take care , are you grumpy , no frustrated, yes
Jo
PS You WILL be timed when you go to any other forum, This is just a friendly warning !!
I KNEW it!!!!!!!!!!!!!!!
Hey, btw - what meds they have you on for those migraines ma'am?
Hey, btw - what meds they have you on for those migraines ma'am?
All I have to say is "you go girl!!" If you truly don't think this complex migraine fits than do what you have to to get the REAL answer. Unfortunately the hard part seams to be that once you get one of these bogus dx's it is difficult for the doctor to change his mind and start really looking for an answer that fits. That has been my experience at least.
Well if anyone can get to the bottom of this it is you and we will all be here right behind you helping. Thanks for sharing your courage and determination !!!
Big Hugs!
Kristin
Well if anyone can get to the bottom of this it is you and we will all be here right behind you helping. Thanks for sharing your courage and determination !!!
Big Hugs!
Kristin
Thank goodness...I thought it was just me reading into your post. I thought the dx was odd but mostly I wasn't feeling that you were not REALLY okay with it. You are a strong person that will get the answers you deserve.Please hang in there..I know you are frustrated. Big hugs....thanks for the post because I was quietly sitting here in viriginia a little worried about you.
Rebeccah
Rebeccah
Hey Sweetie, okay I remember a post that you had sent me when they first told me I had seizures. Now forgive me if I am not remembering this right but you said it didn't sound right and now its my turn to say the HM doesn't sound right either. But I have to say, I am glad they are monitering you a lot more closely now when you are having these attacks so I will be keeping everything crossed for you and wishing you well, my Dear.
Love,
Ada
Love,
Ada
Just because they don't know what they are doing, don't sit for that dx. Maybe you can get the er doc who said ms flare to suggest a new doc for you. You hang in there girl, don't let them get you down. Throw them on the pile for the roast tomorrow night, and yu can bring the drinks! Prayers, Maggie
That is the dx they keep trying to give me also. Although I have had migraines all my life. This just doesn't fit for me. That is why I want to investigate futher.
Just keep throwing the shovel........like my hubby says............lol
Hang in there girl
We are all right here with ya
Beth
Just keep throwing the shovel........like my hubby says............lol
Hang in there girl
We are all right here with ya
Beth
Thanks, Sal!
OMGosh! "grasong" at straws? I swear I'm not drinking tonight! I swear!
I am feeling better and moving on to better things!
Love,
Z*
OMGosh! "grasong" at straws? I swear I'm not drinking tonight! I swear!
I am feeling better and moving on to better things!
Love,
Z*
Maybe not migraines, but there is something going on and at least now they will be monitoring you.
Glad you're feeling a bit better though.
Don't give up.
S
Glad you're feeling a bit better though.
Don't give up.
S
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