SuzU
02-09-2005, 12:20 PM
I've been all over these healthboards trying to figure out what is wrong with me. I have all the symptoms of MS, but no clinical signs except for some brisk reflexes and a questionable lesion (thought to be a syrinx) on my cervical spine.
I'm starting to get really frightened because my tremors are getting so much worse, my arms and legs aren't quite as weak as they were, but not back to normal yet. The tremors seem to happen when I attempt to do something only. I feel them everywhere, fingers, arms, legs, diaphragm, and jaw. I have some twitching and pain in my eye also, but the vision seems unchanged. The problem is, my symptoms seem to be mostly motor, not sensory (though I've had these as well.) From all I've read, this is not supposed to be a good sign, prognostically. Also, I've read that tremors are supposed to be a late symptom?
I'm terrified that I'm going to be stuck with this incurable, undiagnosable and therefore unTREATable condition in its most advanced stages because no doctors will be willing to put me on meds without positive MRI's. I'm not even confident they would treat me if the LP is positive, yet everything I read says it is important to treat this early and aggressively. I guess I missed the boat there, since I've had symptoms for at least 5 years.
I'm still awaiting the results from my lumbar puncture as well as my ssep which is Friday. (BTW-will I know the results of that right away?)
Does anyone have any hope to offer me? Has anyone else had a motor presentation and NOT been told they are in the more advanced stages? The internet can be a great tool, but it can also be a morale killer.
I'm starting to get really frightened because my tremors are getting so much worse, my arms and legs aren't quite as weak as they were, but not back to normal yet. The tremors seem to happen when I attempt to do something only. I feel them everywhere, fingers, arms, legs, diaphragm, and jaw. I have some twitching and pain in my eye also, but the vision seems unchanged. The problem is, my symptoms seem to be mostly motor, not sensory (though I've had these as well.) From all I've read, this is not supposed to be a good sign, prognostically. Also, I've read that tremors are supposed to be a late symptom?
I'm terrified that I'm going to be stuck with this incurable, undiagnosable and therefore unTREATable condition in its most advanced stages because no doctors will be willing to put me on meds without positive MRI's. I'm not even confident they would treat me if the LP is positive, yet everything I read says it is important to treat this early and aggressively. I guess I missed the boat there, since I've had symptoms for at least 5 years.
I'm still awaiting the results from my lumbar puncture as well as my ssep which is Friday. (BTW-will I know the results of that right away?)
Does anyone have any hope to offer me? Has anyone else had a motor presentation and NOT been told they are in the more advanced stages? The internet can be a great tool, but it can also be a morale killer.
Sponsor
Pruedence
02-09-2005, 01:39 PM
I was dxed almost 30yrs ago. Back when I was being dxed, there was no MRI yet. I had several LP...at the time it was just my legs and numbness...they gave me no dxes then...I was in John Hopkins for 3 wks...then they sent me home. I still was not well and with no dxes. I had to make myself strong enough to go back to work..I was a single parent at the time. So I went back to work. Then one day I thought I had something in my eye...my right eye..it began to hurt..and very bother some. I worked in the medical field, so I had one of the doctors that I worked with take a look in my right eye. This doctor knew what all I had been through...he just said to get in touch with my neuro. So I did...I was put back in John Hopkins..another 3 wks..but this time with a dxes of ms. Back then Optic Neuritis was a for sure dxes for MS. I went through hell before the dxes. I lost my sight in my right eye from that attack of optic neuritis...never regained sight in the right eye. Through the years I have struggled with MS. Seems my eyes and my legs are my problems. I stay positive...and wait for a cure. Ms is no a death sentence...its a decease that is hard to live with..but you can still have a life. I hope with me sharing my experiences, that maybe you will not be so confused. This MS is a decease that has baffled so many for many years. But in my heart and soul, I believe we will have a cure. Take care, Kimberlee Jones
VECTRA
02-09-2005, 04:51 PM
hi pruedence,FIRST I WANT TO SAY,READING YOUR REPLY WAS A GREAT JOY,YOUR WORDS ARE SO UPLIFTING.IN SPITE OF ALL YOU HAVE BEEN THROUGH,YOUR ATTITUDE IS BEAUTIFUL :) THEY WILL FIND A CURE REAL SOON AND ALL OF THE THINGS WE DEAL WITH WILL JUST BE A MEMORY.THANK YOU SO MUCH!!!!!!!!!!!!
VECTRA
02-09-2005, 05:05 PM
HI SuzU,SOUNDS LIKE THINGS ARE A LITTLE ROUGH RIGHT NOW,HANG ON,YOU'LL BE OK.SOMETIMES WE GO THRU A LOT OF CRAZY STUFF AND ITS SCARRY TO,BUT PLEASE DONT LET IT GET TO YA!! I'VE HAVE THE TREMORS TO AND I WENT NUTS,BECAUSE I DIDNT KNOW WHAT WAS GOING ON,BUT AN OLDER LADY WHOM ALSO HAS MS EXPLAINED A LOT TO ME,AND COMFORTED ME BECAUSE I WAS SO SCARED.I WAS A SINGLE PARENT THEN AND WORRIED ABOUT MY SON.WELL,THANK GOD HE TURNED OUT OK,HE'S IN THE MILITARY NOW AND DOING GOOD.I'M DOING GOOD TOO.SuzU YOU'RE DOING GOOD TOO.HANG IN THERE ALRIGHT :wave:
SuzU
02-10-2005, 08:44 AM
Hi Vectra and Pruedence,
Thanks for your replies. I'm just going through a rough couple of days. Thanks for the encouragement. I guess if I had a "label" for what is causing my symptoms, I could start figuring out how to deal with it, but so far, all I've been told is that I have "anxiety," which is absurd. Yes, I'm anxious because I'm weak and shaking and no-one seems to think this is abnormal. I'm a person who sings and dances, and hikes and LIVES, not someone who fakes an illness just for kicks. Anyway, thanks for letting me vent. How are you both doing with your MS, symptom wise?
Thanks for your replies. I'm just going through a rough couple of days. Thanks for the encouragement. I guess if I had a "label" for what is causing my symptoms, I could start figuring out how to deal with it, but so far, all I've been told is that I have "anxiety," which is absurd. Yes, I'm anxious because I'm weak and shaking and no-one seems to think this is abnormal. I'm a person who sings and dances, and hikes and LIVES, not someone who fakes an illness just for kicks. Anyway, thanks for letting me vent. How are you both doing with your MS, symptom wise?
gaulty
02-10-2005, 05:04 PM
suzu ive had ms for 2 years and when i was told i knew 1 person with ms ,he was bad with it so i was really worried . But im now doing everything i did before and more it was a lot worse when i didnt know what was up with me,and actually good to find out what it was,yes i get tired a bit more but im lucky,just stay positive.
Pruedence
02-11-2005, 07:02 PM
Symtoms wise...lol...well I think I have experienced alot in the 30yrs...
I had an attack of Optic Neuritis 20yrs ago...took my sight from the right eye, and never regained sight...
My legs are heavy and clumbsy...I use a cane to walk..not at home..I just run into walls and things..its fun lol
You have to have a sense of humor with this desease..its important
You will be fine...keep pluging into all the imformation you can get..
visit some ms chatrooms.,that is where you will get the real story on ms..
I wish you the best...will keep you in my prayers...
Good luch with a dxes..
I had an attack of Optic Neuritis 20yrs ago...took my sight from the right eye, and never regained sight...
My legs are heavy and clumbsy...I use a cane to walk..not at home..I just run into walls and things..its fun lol
You have to have a sense of humor with this desease..its important
You will be fine...keep pluging into all the imformation you can get..
visit some ms chatrooms.,that is where you will get the real story on ms..
I wish you the best...will keep you in my prayers...
Good luch with a dxes..
Pruedence
02-11-2005, 07:03 PM
You are welcome...but I just wrote what is true...thank you for such a nice comment :)