Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Hi! I having very difficult time of it right now! After 2 yrs of trying to get any doc to listen to me & treat me like I might be lucid, I finally have a great neuro office it seems!? This lady sat down with me for 2 hrs! And, she ordered the right test! In the right order!
I have had a multitude of symptoms indicative of MS! I will list them & see what you guys that have it think!?
I have had: flashing lights that showed up magically one night, & then stayed for 3 months! That was about a 1 1/2 a go? And, then a few months or so ago, probably 6 now??? I had sudden onset blurry vision in my left eye! And, a loud pounding hearbeat in my left ear at the same time with hearing loss on pulsation! I have major problems with spasms anywhere & everywhere! Spasticity issues!? And, I haven't been able to tolerate the cold for a long time now, because it causes me major spasms & great pain!!! But, as of the past couple of summers, & this summer as well, I can't tolerate the heat either! I mean, I never did tolerate it well, to be honest! But, now it's like on a whole new level!!!
If I get in the heat esp... or get hot! But, esp.. if I'm outside in the heat, or traveling with no air in the heat, I just start sweating perfusely, & then I get fatigued on a whole new level!!! Beyond drop dead exhaustion! Like heat stroke kind of shit! Then, I get real weak real faster, & the hotter & more fatigued I get the weaker I get!? Then my legs just turn into jello! Then, I start stumbling & get real dizzy & start passing out! I will colaspe if I don't get in some place cool & lay down!
I have to lay down & get really cool really fast! And, then everything gets better! The cooler I get the better I get! OH YA! My brain complelely shuts down!!! Just shuts down!!! NOTHING! Can't funtion at all! Just mush! I'm like in some sort of state of confussion!?
And, one time years ago, I woke up & one side didn't work! Freaked me the crap out!!! And, then when I got in the shower both legs quit working & I wound up just sitting in the stupid tub for 20 minutes while they decided to work!
I once went completely blind for 20 minutes while out in public trying to get a script filled!?
And, cognitively! Well, that's going down the toilet month by month, year by year! I have problems thinking! I can't get my thoughts, my words & my mouth together!!! I'm like saying one thing & thinking another! I mean I'm thinking something & trying to get it out of my mouth, but can't seem to get it out! When, it comes out it comes out different or backwards. And, I say & type words that I'm not even thinking & type incoherrant sentences & then look at it go What the hell did I just type, & WHY????
And, lately it's like I doing something & then it's like I just suddenly forget how to do it! I am now forgetting how to do things that I already know how to do!!!!
And, lately I've been having bad dreams all dog-gone night!!! And, they are awful!!! And, I wake up feeling like I've been in some God-awful battle with the damned devil all night!!! And, I wake up in this huge state of anxiety! And, at least twice now I've woke up shaking & shook all day! Was just really shaky all day & way off my game & my brain didn't work right!?
I have had tremors sometimes, mostly in my right hand, but sometimes in my left, & sometimes in both at the same time!
I have tested good on Lupus, Folic Acid/Iron, Lyme, Rumatoid, & other bloodwork cept for I have a vit. D def.....
And, I am having huge problems with being anxious & depressed! I just go into really bad depression! And, just get really anxious & feel I'm losing my freaking mind! And then I start acting like it!!! And, thats even worse!
It's just all kinds of crazy shit!!! And, things will just appear, say for whatever duration that they feel like staying & then just leave the way they came!!!!
And, after I saw this last neuro, I felt really elated at first because I felt like FINALLY!!! I HAVE A GREAT DOC WHO IS LISTENING & DOING ALL THE RIGHT THINGS!!! But, then, right after that I got this sudden, sick feeling deep in the pit of my stomach & this KNOWING??? that OMG! It's finally here! I am fixing to be diagnosed with MS & when I am how in the hell am I going to handle it!?
I mean I have had a family doc at an Urgent care clinic convinced that I have it! Then, my best friend who started out as my PT & has worked with tons of MS patients over the years, & has known me around 3 now, said--when I pushed the issue that "Yes! In my mind I am totally convinced that you have MS! Because I have seen what I've seen & know what I know from working with the many many MS patients that I've worked with over the many years! And, I have know you for a few now, & have seen all the shit that you deal with & all the crazy stuff that comes & goes, & when you talk about the heat stuff & your legs & brain with it, with what I see & know from all of you, YES! I believe that you have it! In my mind I am totally convinced! But, in my heart, because you are my friend & I love you so much I am in denial!!!"
And, I've had a couple of others mention it along the way! And, when I talked to a couple of MS patients here they were convinced of it said that I have it, but it make the doctors forever to get around to admitting it! They said that even when the doctors know in their mind & in their heart that they just don't want to tell you that!!!
But, I have been treated like I'm some crazy drug-seeking lunitic for a long time now! 2-3yrs now!!! And, I am sick & tired of being treated that way!!! I need some doctor somewhere with the guts to just say I believe you have this>>>> whatever THIS is????
That one came out & said it! But he wasn't a neuro! And, until a Neuro puts it or something serious here down on paper I will just continue to be treated like it's in my head, or like I'm freaking crazy! And, there is nothing worse or more insulting then to suffer in the pain & agony that I am in & in the hell that I am in--esp..... with all the eye & ear stuff, & brain stuff--I mean, it's like I'm suddenly a blonde barbie airhead!? And, people just think that I'm stupid!!!! And, treat me that way! And, sometimes I THINK I'M FREAKING STUPID OR RETARDED!?
It all tares me up & makes my life hell & then the doctors have added insult to injury by treating me like a crazy drug-seeking lunitic!!!! It really really hurts!!!!! Because they have treated me soooo horribly because of their judgement!!!! They have abused the hell out of me over & over & over!!!!! And, I have been acused of all manner of evil that I have never done or said!!!!!!!! And, I for one am just plain sick of it!!!!! And, find it appauling!!!!!
But, I just keep having this horrible sick feeling in the pit of my stomach that just makes me feel & believe that I have it, & that I need to start excepting it!!!!!! And, when I think that that may be true I just get soooo damned mad & terrified & just completely sit in the floor crying & just completely fall apart!!!!!!!!!!!
I am at this minute losing my mind, & sooo depressed that I can't handle it!!!!!!!!!!!
What do you all think??? About all these symptoms!? And, about them being MS or not!?
And, if anybody can!? I need to talk!? I am sooo depressed!
I am in school, & have to study a lot right now, & have a pack of Brittanies & have to take care of & do a ton of stuff by myself even though I am not able! So, if I take longer than I should to get back to you I DO APPOLIGIZE!!! BUT I WILL GET BACK ASAIC!!!!
THANKS GUYS............
I have had a multitude of symptoms indicative of MS! I will list them & see what you guys that have it think!?
I have had: flashing lights that showed up magically one night, & then stayed for 3 months! That was about a 1 1/2 a go? And, then a few months or so ago, probably 6 now??? I had sudden onset blurry vision in my left eye! And, a loud pounding hearbeat in my left ear at the same time with hearing loss on pulsation! I have major problems with spasms anywhere & everywhere! Spasticity issues!? And, I haven't been able to tolerate the cold for a long time now, because it causes me major spasms & great pain!!! But, as of the past couple of summers, & this summer as well, I can't tolerate the heat either! I mean, I never did tolerate it well, to be honest! But, now it's like on a whole new level!!!
If I get in the heat esp... or get hot! But, esp.. if I'm outside in the heat, or traveling with no air in the heat, I just start sweating perfusely, & then I get fatigued on a whole new level!!! Beyond drop dead exhaustion! Like heat stroke kind of shit! Then, I get real weak real faster, & the hotter & more fatigued I get the weaker I get!? Then my legs just turn into jello! Then, I start stumbling & get real dizzy & start passing out! I will colaspe if I don't get in some place cool & lay down!
I have to lay down & get really cool really fast! And, then everything gets better! The cooler I get the better I get! OH YA! My brain complelely shuts down!!! Just shuts down!!! NOTHING! Can't funtion at all! Just mush! I'm like in some sort of state of confussion!?
And, one time years ago, I woke up & one side didn't work! Freaked me the crap out!!! And, then when I got in the shower both legs quit working & I wound up just sitting in the stupid tub for 20 minutes while they decided to work!
I once went completely blind for 20 minutes while out in public trying to get a script filled!?
And, cognitively! Well, that's going down the toilet month by month, year by year! I have problems thinking! I can't get my thoughts, my words & my mouth together!!! I'm like saying one thing & thinking another! I mean I'm thinking something & trying to get it out of my mouth, but can't seem to get it out! When, it comes out it comes out different or backwards. And, I say & type words that I'm not even thinking & type incoherrant sentences & then look at it go What the hell did I just type, & WHY????
And, lately it's like I doing something & then it's like I just suddenly forget how to do it! I am now forgetting how to do things that I already know how to do!!!!
And, lately I've been having bad dreams all dog-gone night!!! And, they are awful!!! And, I wake up feeling like I've been in some God-awful battle with the damned devil all night!!! And, I wake up in this huge state of anxiety! And, at least twice now I've woke up shaking & shook all day! Was just really shaky all day & way off my game & my brain didn't work right!?
I have had tremors sometimes, mostly in my right hand, but sometimes in my left, & sometimes in both at the same time!
I have tested good on Lupus, Folic Acid/Iron, Lyme, Rumatoid, & other bloodwork cept for I have a vit. D def.....
And, I am having huge problems with being anxious & depressed! I just go into really bad depression! And, just get really anxious & feel I'm losing my freaking mind! And then I start acting like it!!! And, thats even worse!
It's just all kinds of crazy shit!!! And, things will just appear, say for whatever duration that they feel like staying & then just leave the way they came!!!!
And, after I saw this last neuro, I felt really elated at first because I felt like FINALLY!!! I HAVE A GREAT DOC WHO IS LISTENING & DOING ALL THE RIGHT THINGS!!! But, then, right after that I got this sudden, sick feeling deep in the pit of my stomach & this KNOWING??? that OMG! It's finally here! I am fixing to be diagnosed with MS & when I am how in the hell am I going to handle it!?
I mean I have had a family doc at an Urgent care clinic convinced that I have it! Then, my best friend who started out as my PT & has worked with tons of MS patients over the years, & has known me around 3 now, said--when I pushed the issue that "Yes! In my mind I am totally convinced that you have MS! Because I have seen what I've seen & know what I know from working with the many many MS patients that I've worked with over the many years! And, I have know you for a few now, & have seen all the shit that you deal with & all the crazy stuff that comes & goes, & when you talk about the heat stuff & your legs & brain with it, with what I see & know from all of you, YES! I believe that you have it! In my mind I am totally convinced! But, in my heart, because you are my friend & I love you so much I am in denial!!!"
And, I've had a couple of others mention it along the way! And, when I talked to a couple of MS patients here they were convinced of it said that I have it, but it make the doctors forever to get around to admitting it! They said that even when the doctors know in their mind & in their heart that they just don't want to tell you that!!!
But, I have been treated like I'm some crazy drug-seeking lunitic for a long time now! 2-3yrs now!!! And, I am sick & tired of being treated that way!!! I need some doctor somewhere with the guts to just say I believe you have this>>>> whatever THIS is????
That one came out & said it! But he wasn't a neuro! And, until a Neuro puts it or something serious here down on paper I will just continue to be treated like it's in my head, or like I'm freaking crazy! And, there is nothing worse or more insulting then to suffer in the pain & agony that I am in & in the hell that I am in--esp..... with all the eye & ear stuff, & brain stuff--I mean, it's like I'm suddenly a blonde barbie airhead!? And, people just think that I'm stupid!!!! And, treat me that way! And, sometimes I THINK I'M FREAKING STUPID OR RETARDED!?
It all tares me up & makes my life hell & then the doctors have added insult to injury by treating me like a crazy drug-seeking lunitic!!!! It really really hurts!!!!! Because they have treated me soooo horribly because of their judgement!!!! They have abused the hell out of me over & over & over!!!!! And, I have been acused of all manner of evil that I have never done or said!!!!!!!! And, I for one am just plain sick of it!!!!! And, find it appauling!!!!!
But, I just keep having this horrible sick feeling in the pit of my stomach that just makes me feel & believe that I have it, & that I need to start excepting it!!!!!! And, when I think that that may be true I just get soooo damned mad & terrified & just completely sit in the floor crying & just completely fall apart!!!!!!!!!!!
I am at this minute losing my mind, & sooo depressed that I can't handle it!!!!!!!!!!!
What do you all think??? About all these symptoms!? And, about them being MS or not!?
And, if anybody can!? I need to talk!? I am sooo depressed!
I am in school, & have to study a lot right now, & have a pack of Brittanies & have to take care of & do a ton of stuff by myself even though I am not able! So, if I take longer than I should to get back to you I DO APPOLIGIZE!!! BUT I WILL GET BACK ASAIC!!!!
THANKS GUYS............
Most importantly DO NOT PANIC. You are going to be alright. There is an answer and you will find it.
Feel better.
So, I would rather her schedule the whole series on the MRI & just do it while I'm stuck there waiting!? Rather then to have to go back out & go through that again! I am clostraphobic & I have major anxiety issues & major problems--even with meds having those done! However the place I am doing this I went the last time & they were great! It was the best smoothest one I've ever had done! I got to pick where I went & I thought since this last one went so well at this place that I would go back!?
I am going to try to remember to take my meds with me to take!? As I won't be driving I can take them & not have to worry! I always have to med up when I do one of those!
When this is done she is going to take the results of the bloodwork & this MRI & study it in relation to the MS symptoms! She is a NP there but she is great, & smart as a whip!!!!!! Smarter than Doctor that I've ever seen!!!! And, she is going to go have a meeting with the 2 Neuros that she works with and they are going to put their thoughts & ideals on the table as to what they think it is, & as to what further testing that they need to do, etc....
And, I do know that it can take many years for the lessions to show up!? So even if they are not there yet, then it doesn't mean that I don't have MS! In the mean time they are just ruling out everything else! And, so far!? Everything else has been ruled out!?
One thing that is killing me the most & making me panic the most is losing my transportation! I can't afford to have it looked at or fixed! Though one mechanice did glance at it & tell me that it was not good & that it needed a lot of stuff! Engine is having major issues! And, I am in the country! I JUST CANNOT HANDLE BEING STUCK HERE AT MY HOME 24/7 WITH NO WAY OUT OF HERE!
I AM JUST GOING TO LOSE MY MIND WITHOUT BEING ABLE TO GO AS I NEED TO GO!!!!!
THANK YOU FOR YOUR RESPONSE!!!
The reason they don't do MRIs lowere than the T-spine for suspected MS is that the spinal cord ends at T12-L1. The spinal canal goes further but Docs want to check out the white mater. Below L1, the canal is filled with a bundle of nerves called the cauda-equina or horses tail since that is what it looks like.
To check for MS by MRI you need brain, C-spine, and T-spine, regular and enhanced with gadolinium that make active lesions lite up. Took them about three friggin hours in that tube to do all three (esentially 6 MRIs). Maybe you can request an open MRI machine. Tell them you are claustrophobic. If you are a man of any size, you can't bend you elbows to scratch nothin. Every man I know has to scratch something, usually more than one something in three hours.
But all I am having done is my neck! I might have gotten out of it if I had been able to get an older one to her, but my thinking was if she's going to do it, then let them do it, because things could have happened since then & may show up something now, as opposed to then!? Cause it's been a couple of years since the last one! So, I think that a repeat now wouldn't hurt!?
The tech guy said that they almost NEVER do more than one section of the spine at one time! Esp.... if they are using contrast, because it takes entirely too long! The contrast doubles the time! And, he said it would take at least 2-4hrs for all the spine, & he said that nobody can lay still in one of them for that long! So, because of the length of time & the fact that it is soooo confined they usually schedule one section at a time!
But, sometimes they will schedule it in the same day but 30 to an hour apart to give you a break in between!
Honestly I have no ideal how you stayed in that frigging thing for 3 hrs! I do good to last 15 min...... By the time they were finished at 20-25 minutes that was more than enough for me! And, I had to have drugs for that! So I would definately have to have a break in between!
While I'm posting again here, I would also like to add to my symptoms that I have fallen a LOT over the years & have added to my already BI stuff & many other injuries as well... And, I drop stuff a lot & knock stuff over a lot! Like I'm real clumbsy!? Can't spell here! Sorry!
I appreiate all the info far & the understanding!!! Thanks guys!