Aa
Met a friend who had all negative MRIs BUT......
Well i met someone through my care worker who has MS its her sister actually. For 3 years she was ill with very similar stuff to me. ALL her MRI's were clear, finally in desperation she insisted on having a lumber puncture as she was getting worse and worse and at 27 it was no way to live.
Well her lumbar puncture results were a shock for the neurologist she has MS, and it is AGGRESSIVE MS.
10% of people with MS have negative MRI's and in the UK there are supposed to be about 85,000 diagnosed, so I make that 8,500 people mis diagnosed and she was one of them.
What do you think to that.
So she is now diagnosed with MS but ITS got aggressive very quickly and she has been told by the time she is about 35 she will be more or less bed bound.
IF she hadnt insisted she would never have known for a longish time yet.
The thing is guys if you know you are ill KEEP going you will get a diagnosis one day it might not be MS but it will be something.
Well her lumbar puncture results were a shock for the neurologist she has MS, and it is AGGRESSIVE MS.
10% of people with MS have negative MRI's and in the UK there are supposed to be about 85,000 diagnosed, so I make that 8,500 people mis diagnosed and she was one of them.
What do you think to that.
So she is now diagnosed with MS but ITS got aggressive very quickly and she has been told by the time she is about 35 she will be more or less bed bound.
IF she hadnt insisted she would never have known for a longish time yet.
The thing is guys if you know you are ill KEEP going you will get a diagnosis one day it might not be MS but it will be something.
You have to keep going. My friend had 4 bands i think it was in her serum, and something else which is only found in MS, cant remember what it was to be honest.
The thing is WHY nothing on the MRI if there are multiple lesions?
The problem with lesions they can come and go and also when the MRI is given the lesions could be either further in or out of the brain so they can be missed. Also lesions do heal, so perhaps by the time she had her MRI they had done just that, and all the problems she is having is peripheal damage etc.
Like she said to me, if she hadnt pushed she would have been labelled with CD or something similar.
Yes there are some people who have CD etc, but they are in the very minority, but they still have problems dont they.
CAREBAYER, good luck on your appointment. xx
The thing is WHY nothing on the MRI if there are multiple lesions?
The problem with lesions they can come and go and also when the MRI is given the lesions could be either further in or out of the brain so they can be missed. Also lesions do heal, so perhaps by the time she had her MRI they had done just that, and all the problems she is having is peripheal damage etc.
Like she said to me, if she hadnt pushed she would have been labelled with CD or something similar.
Yes there are some people who have CD etc, but they are in the very minority, but they still have problems dont they.
CAREBAYER, good luck on your appointment. xx
This really hits home for me. I dont have a dx yet, but knowing I am only 28yrs old and whatever is going on with me is progressing at a rapid rate within this past year is troubling.
It is very hard getting tons of test and they all come back normal to equal up to the symptoms. I, myself have thought at times about giving up. I just cant. I have to keep moving, pushing for myself and others who may be going through what we are. I dont want anyone to have to go through what all us have to.
I do have some encouraging news. My great PCP and his staff were able to get me into the Cleveland Clinic with a very good neuromuscular neurologist. This was quite a feat because of my insurance and the lack of evidence in the test. Hopefully soon I will have a diagnosis.
It is very hard getting tons of test and they all come back normal to equal up to the symptoms. I, myself have thought at times about giving up. I just cant. I have to keep moving, pushing for myself and others who may be going through what we are. I dont want anyone to have to go through what all us have to.
I do have some encouraging news. My great PCP and his staff were able to get me into the Cleveland Clinic with a very good neuromuscular neurologist. This was quite a feat because of my insurance and the lack of evidence in the test. Hopefully soon I will have a diagnosis.
Mrs A,
thanks for the pep talk. Everyone needs that occasional reminder that if something isn't right they deserve answers. It takes tons of energy to push on but is so important for our health not to give up. I have to wonder how many people have stopped searching for answers just because their doctor told them their tests were normal?
my best, Lulu
thanks for the pep talk. Everyone needs that occasional reminder that if something isn't right they deserve answers. It takes tons of energy to push on but is so important for our health not to give up. I have to wonder how many people have stopped searching for answers just because their doctor told them their tests were normal?
my best, Lulu
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