Multiple Sclerosis (MS) Support Group

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Diagnosis FRUSTRATION...

sooverit
sooverit
I went to the nuerologist, hoping for some answers-any answers. The trip was 8-yes eight-hours EACH WAY. We got there and the dr (or his office) had LOST my file. All of my local dr's note were not availiable to him, so we had to start from scratch, so that took up most of our limited time. I had personally brought a cd with the mri scans with me. He looked at the pictures-there were more than 500, I noticed, and determined that the brain scan was clear. However I was presening some symptoms that suggest a spinal lesion. I knew that I had a mri of the spine as well, but perhaps that cd did not contain those images?? He said he didn't see them...but there were so many pictures and he didn't look very long. He determined alot of my symptoms could be chalked up to fibro, but several suggested a spinal lesion, but there could be no diagnosis without a clear lesion. Then he was out of time and "really had to go."
After the eight hour drive home, I've worked myself up. I am angry at being no where again! Apparently you can have lesions on the spine without lesions on the brain, but does this mean anything in particular? I tend to treat my fibro as a nuisance, rather than a serious disease; however, with the undetermined ms question lingering, I am a little nervous about pushing myself as hard as I need to at work. I have a lot hours that need to be put in at my business-with a lot of physical strain and mental stress with them-is it ok to do this with possible ms? Any other diagnosis recomendations?
deleted_user
deleted_user
Join the club and I so understand your frustration.
Doctor after Doctor , test after test each DR. saying something else then sending you to another one for more tests. $20,000 It cost me all my life savings and two and a half years till a dx.
Then they WANT ro put you on meds because you are upset !
Gee did they think that we might be upset because they do not know what they are doing and dont care. Yeah I went thru that and I dont blame you one bit >
You are right to be upset and to all those who cant understand that they can bite me. Wow that felt good to say , but hiney they will all try to tell you that you are crazy to be upset about this but you are NOT .
lOVE YOU FOR BEING REAL !
deleted_user
deleted_user
WHY DID U TRVL 8 HRS TO GET THERE, ISNT THERE ANYTHING CLOSER? WHERE DO YOU LIVE AND MAYBE WE CAN FIND YOU A MS SPECIALIST.
I WENT TO THE DR DUE TO NUMBNESS IN THE CHEST, I HAD A SPINAL MRI DONE AND THEY FOUND LEGIONS, SO THE DR WANTED TO DO A SPINAL, I SAID NO WAY, SO I WENT TO A MS SPECIALIST IN PIT, AND HE'S GREAT. HE MADE ME GET A BRAIN MRI AND HE SHOWED ME WHERE THE LEGIONS WERE IN MY BRAIN. IF I NEED ANYTHING, I CALL HIS OFFICE AND REQUEST IT, YOU SHOULD HAVE A DR THAT WORKS FOR YOU, THAT YOU TRUST, AND THAT IS A LOT CLOSER.
JAV
sooverit
sooverit
I live in the middle of no where-there were a few drs closer, but this guy was supposed to be the best at diagnosing hard cases...
deleted_user
deleted_user
reddot i do believe i love you!!!.
sooverit-this is very common and i'm so sorry your going through it to.it took 7 years for me.
deleted_user
deleted_user
i would love to know where you went. i am scheduled to drive 8 hours or so to be seen at the Cleveland Clinic and hope i don't end up in the same position. You have every right to be pissed off and I hope you were able to share your dissatisfaction with them. I would encourage you to write a letter to the Practice Administrator of the clinic where you went. Also, i would encourage you to go somewhere else. don't give up.
Spinal Lesions: you can have MS and a normal brain scan, but positive spine MRI. It just tells you wherem your body is affected. MS and a "cousin" of MS called Devic's disease can cause spinal lesions.
Have you had a spinal tap? That can be pretty slam dunk when you add it to the other studies and tests you have.
Fibromyalgia DOES NOT cause "dots and spots" on MR.

Good Luck
deleted_user
deleted_user
sooverit - I understand your frustration completely. I can't even begin to tell my doctor horror stories. Are you able to view the CD of your MRI on your computer? I made a copy of mine and then opened it on my computer and went through every image and found one marked up with a measurement, captured it and saved it as a .jpg and then printed it out on letter size paper. That is the image I handed to my newest GP and he even copied it and attached to my CPP Disability application. Good Luck.
deleted_user
deleted_user
I can totally sympathize with you! I am American Indian but live in Alaska so go to the Alaska Native Medical Center, where the average use for the meds we take is for Hepatitis C and there are few Natives that are DX'd with MS so first was the constant Bladder Infections that I begged to go see the urologist for, then I went numb and was given Valium and Vicodan and Percocet and a nurse actually told me the Valium was so "You wont care that you cant feel your arms and legs". Finally after 2 years of antibiotics for Bladder and Kidney infections I was referred to Urology where after a Urodynamics test was told I have Classic MS Bladder and had the tests been done 2 years earlier I would have been DX'd then. I was also told my pain and Neuropothy was all in my head and after my MS DX I took a copy of my MRI to his office and said "You were half right, it's MS so it IS in my head..." Be your own best advocate and if you have Bladder problems bring them up and get to a urologist and you could be DX'd that way. Hope it helps
deleted_user
deleted_user
I can totally sympathize with you! I am American Indian but live in Alaska so go to the Alaska Native Medical Center, where the average use for the meds we take is for Hepatitis C and there are few Natives that are DX'd with MS so first was the constant Bladder Infections that I begged to go see the urologist for, then I went numb and was given Valium and Vicodan and Percocet and a nurse actually told me the Valium was so "You wont care that you cant feel your arms and legs". Finally after 2 years of antibiotics for Bladder and Kidney infections I was referred to Urology where after a Urodynamics test was told I have Classic MS Bladder and had the tests been done 2 years earlier I would have been DX'd then. I was also told my pain and Neuropothy was all in my head and after my MS DX I took a copy of my MRI to his office and said "You were half right, it's MS so it IS in my head..." Be your own best advocate and if you have Bladder problems bring them up and get to a urologist and you could be DX'd that way. Hope it helps
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