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.
I havent had any new activity in my MRIs for over 4 years now. My dr. said he may downgrade my diagnosis of this continues. Has anyone else experienced this? Do I dare get too hopeful? I still have damage and the dr says this is to be expected. My one and only attack was severe in 07, but nothing new for a long time now. any response will be appreciated.
What would it change? Be careful, if he changes your dx that might change coverage and meds you can get, also any state benefits.
Alma
I'd go so far as go to another doctor.
These MRI scans: There is a reality to them that I've noticed I never see mentioned these days.
That is that they can change from one day to the next. A lesion that was there yesterday can be gone today. I used to have an image of a lesion that had been followed for a year on my old computer with Windows 95 on it. It became obsolete/not viewable.
In any event, these lesions DO come and go. I find it hard to believe there have been no changes at all in 4 years as they move around just by the nature of what they are.
Also, just FYI, you can have thousands of lesions and ZERO symptoms. The neuro that DX'd me told me this.
Hence there is NO CORRELATION between the severity of the disease and the number of lesions that show in the MRI scan of your brain.
This is the absolute truth. These "disease modifying drugs" -- what exactly do they do to these lesions? Some say it makes the go away, well so what? If there is no correlation lesion load and the severity of MS then why keep this up forever (meaning MRI scan after MRI scan)?
I've had two MRI scans (the first one was messed up and it had to be redone). It showed some lesions, but not a lot of them.
After the diagnosis I was horribly ill like you state you are now, with the legs feeling like they weighed 100 lbs. each, staggering around unable to really "walk" and severe visual disturbances, headaches and all the other junk that goes with this illness.
So today, am I considered to be a benign case? Don't I wish. People with benign MS tend to have a couple of attacks with no permanent disability left behind and simply recover and that can be the end of it of if they are affected again, it could be more of the same but mild, not anything like the symptoms that you describe which also btw sound very much like what I deal with every day.
My symptoms are always present, they never go away.
I've been fortunately lately however as my eyesight has improved after an horrible blind episode some 17 years ago. I've had other optical attacks since, but not another one as severe as this one that left me blind and my eye a mess.
I do not believe from what you describe that you have MS.
My worry is for all of us here that rely upon our disability benefits and what these "doctors" may or may not say. The guy I was going to when I was dx'd told me I was in "full remission" and that I could go back to work! I was going to go back and then the blind episode happened and the reality of the situation was this:
Said doctor didn't want to really "deal" with me, he wanted to be rid of me and/or have me in his office for an appt. every two weeks.
He thought my problem was a psychological one at that time and that I hated my job, not that I was really sick which I indeed was.
When the blind episode occurred I was going to him still and he said to me, "If you could have any job you want, what would it be?". I told him, "I cannot think about a "job" at this time as my energy is focused upon my health and hopefully regaining a portion of it."
I told him I was going to file for a disability retirement via my employer and that I really needed his support. I don't think he wanted to take the time to help me, that was the reality of it.
I had not long after this retained an attorney who very luckily directed me to another doctor (not a neurologist btw!) and I've been going to this same doctor since 1995. This doctor believes me, supports me and helps me.
I've never heard the words "benign MS" come from my doctor. The last words I heard were "primary progressive" which I believe is a realistic description of where I am at with this disease today.
No more big attacks, just slowly worsening with time/age.
Hang in there my friend and if I was you, I'd be looking for another doctor that is tossing words like this around. Lets hope he has not written down anywhere. It will do you no good at all!
Your friend,
hope4acure
This statement is an error. It should have said I believe that you do have MS and it is NOT a benign case.
Sorry for this mistake, I don't know how that came out like that!
In any event, find another doctor to go to, one that supports and believes you and does not question you diagnosis which sounds much like myself -- primary progressive or perhaps relasing/remitting still.
If you still get attacks it is relapsingremitting, not primary progressive which has is advantages (I thought I'd never say this). The advantage is that you no longer get the bad attacks, you just slowly (and hopefully very slowly) worse with time/age.
Sorry about that again!
I wish that DS gave us the ability to go back and edit our posts if they have errors in them!
I recently had an eye MD tell me she wanted to down grade me to mild MS. I said DONT TOUCH MY RECORD. Then I made her explain herself. She couldnt. I asked her why she believes this, she couldnt. I asked her if she believes I have MS. She started back peddling saying I DIDNT SAY THAT! Um..yes! you did. I kept pushing her for why. Explain what you mean. She ended my appointment early and slunk away. I waited 5 months to see her! She is a specialist in EYES! not MS.
If you need to be down graded (and it can happen) please let it be at the hands of an MS specialist. It changes what you are qualified to receive. from SSDI to clinical trials, to DMD meds for this disease. Same happens if you move to SPMS, you will stop qualifying for certain drug help, and routines.
I hope you feel better. ((hugs))
good luck, connie