Sigh....I guess it is never going to end.....anyway here is what happened...
I had to go back again to see him today, because he needed to see my Sept MRI (which I forgot to bring last wednesday to my visit)
He rechecked my left eye....which was normal today :) (he sent me to a neuro opthamologist last thurs because he saw my left eye was not "moving" the way it was supposed to) (by the time I went to the neur-opth the next day my eye was fine!)
He looked over my new and old (1993) MRI ..... he couldn't understand why I only had brain stem lesions....and the "lesions" he saw weren't typical for MS...he was confused....he said, if it was 1983 before MRI's, he would easily diagnose me with MS. But now with MRI's....he can't DEFINATELY say yes it IS MS.
He said my balance, eye issues, vertigo attacks without nausea....all point to the brain stem...along with heat intolerance, fatigue, weakness and clinical finding all point to MS. He can't figure out why I show no lesions in my brain. Although he did say NONE of my MRI's were done using MS protocol.
He said my pain and some of my other symptoms can be explained from my spinal cord compression in my neck and degeneration of discs in my cervical and thoracic spine.
He is now sending me for neuro-psyc testing (cognitive function)...my short term memory, word finding, blanking out when thinking/talking and my ability to spell has been really bad.... I am supposed to go Nov 28th.
I explained I was filing for disability.....he was very concerned, caring and helpful...he said he is going to put as my dx.....probable MS, being followed closely, spine pain, ....I can't remember the rest....haha due to the memory problem!!
I go back in 4 months ( or sooner if new symptoms arise)....to have have another MRI of my brain done this time to MS protocol.
Well, I think that is about it....so do I have MS? I think I will take a poll (vote) ...All of you that think I have MS vote (yes).....those who think I don't have MS vote (no) I think that will be the only way I will ever get an answer!
My question is....OK..if it isn't MS what in the $%^& is it???? All other tests are negative.....
The way it works with Neurologist is it is not MS until they say it MS. This is more confusing than other diagnosis. I was told "You will be diagnosed with MS". "It can't be anything but MS". "Four Neurologists think it is MS". Until you are diagnosed with MS none of that counts. I went on like that for two years. By the time I was diagnosed I had had MS over 40 years. I had my first Neurological hospitalization in 1965 and I was diagnosed in 2009. I had a brain stem lesion and two on the ventricals on my first MRI, classic MS and that did not count.
Sounds like the doctor is following up. He sounds like he cares.
I've been on a waiting list for a neuropsych evaluation since July. Should be getting in sometime between November and January (at least this is what they said but I wouldn't be suprised if it is longer). I'm hoping they can find a way to help my brain function. It's bad enough to say things wrong and not be able remember things at home but it is a real challenge at work.
I have to admit to also being stumped by the lack of other lesions but I have to wonder if shrinkage would help explain the why of it? Measuring the total brain volume isn't commonly done but it can be and if your having cognitive issues then gray matter could be involved. Its actually only due to recent research into cognitive issues (alzhimers, dementia, MS etc) that we are getting clinical data to support the anacdotal (patient stated) cognitive issues in MS.
It wasn't that long ago, something like in the last 5 years that it was believed that pwMS didn't experience notible cognitive issues until late into the disease process, wasnt thought to be typical either. Thats totally flipped about, there is enough research evidence to support, that cognitive changes are happening early and its a common issue. Off the top of my head i can recall, executive dysfunction and word finding but i think there is at least another cognitive issue thats commonly connected to MS.
lol spelling isn't something that your going to find has been included in any of the research but just being on here for a few years, i've noted that (only anacdotal) loosing prior spelling and grammar abilities is part of the cognitive issues we talk about so its possibly connected.
Hi! For what it's worth, I lean toward yes in your poll ;-)
Supermum's post makes a lot of sense. I had read some old posts and there may be some information in the Health Pages about this, if my memory serves me, which often it does NOT, haha!
I have no idea what I have, although I have noticed that in addition to fatigue, my right side of my body being a mess, my left arm being possessed by an alien, and my vision suddenly going bad, that I have horrible cog fog. I so understand! It is frustrating and it is getting harder and harder to keep up at work.
It does sound like you have a good doctor, which is encouraging. I reckon in the meantime you and I and whomever cares to join us can hang out in the cave!
MS or not....there is definately something wrong in the "cognitive/memory/spelling area" I have NEVER in my life had these kinds of problems this severe...oh yes I have had moments here and there and usually around my period (in menopause now) But this is actually scary!!
I have noticed a steady decline in the last month....hope it hits bottom soon and starts to go back up again! ;).....Last night, I was reading out loud to a friend on the phone an article that I found for her....(she was just dx with bone marrow cancer) :( ........ anyway ....
I was having tremendous difficulty reading the words out loud...I was mispronouncing words and it felt like I couldn't form the words correctly in my mouth!! I had to read VERY slowly to get out the words correctly and even then I still made mistakes!! Bizarre!!!!
Between the the "blank outs" short term memory problems, can't spell, and NOW read out loud....GEEZ what's next?!
thanks JJ ...for the link and your knowledge on this...it is very helpful!!
I experience the same thing you do, and it's really tough because it happens at work. I will be in the middle of a presentation I have written, which that in itself is now a major challenge, only to find myself stumbling over words or just going blank. That is so not like me.
I also later find I have misused a word in an email and even after I proofread, that my grammar isn't right. Now I get my friend Amy to proof for me and she catches things. I used to be a top speller and did very well in English in both high school and college. Misuse of words and incorrect grammar used to be a pet peeve. Now I am one of the worst offenders. :(
I joke about it being old age, but I am 46 and I hardly consider that as old.
Just wanted you to know you definitely aren't alone in this.
thanks SFAM (Sister From Another Mister) it does make me feel better to know I am NOT alone! I can't imagine having this happening to me while I am working....my deepest sympathies!!!
I had some friends tell me this was probably due to menopause....I at first believed it. NOT NOW! If that was true EVERY woman in menopause would have to retire! PLUS it doesn't come and go for me....it is definately getting worse. :( . I wonder if this could be a "relapse" symptom? Only time will tell....
Hmmmm i've always been unflapperble, the calm port in the middle of armageddon and still evolving. I've always described my self as being a happy go lucky chamelian and that still applies despite everything thats happened to me since my big bang in April 09. I giggle my way through all the weird, adapt through all the physical because none of it defines or changes who i am, i'm still me but there are 2 things, just 2 that are chipping away the me factor.
Truth is, there is nothing, absolutely nothing modern medicine can do about it but 'I' can fight it and I can work as hard as I need to, to get back what ever i can because for me doing nothing is just 'not' an option! Those 2 things are cognitive and communication, I can adapt through all the rest but those 2 things, they do change me and i'm going to fight, do what ever it takes because I actually like me as i am!
I am lucky to have worked with children with disabilities for the last 20 odd years, I have learned a lot of tricks over those years and when the big bang hit and i could no longer ignore it or make excuses because with this episode it was now blatently obvious my brain was fried, i'd now lost 'all' nouns and I couldn't name my kids. I was in trouble and I knew it, i also knew that if my brain was fried, there was no time to wait, what ever it was just wasn't as important as working through what i'd learned, trying to find what ever worked to get back what I could.
I didn't know about MS back then, I just knew a lot about the brain, and was already a firm believer in brain plasticity, (lol even though for decades that belief contradicted the expert theory, though now it doesn't) and i knew I needed to work out exactly what was lost, so I had a specific area to work on. I have never ever got it all back, but i believe that all these odd little things that i do, are helping to create new neuro pathways, alternate routes around the road blocks.
An example, I'm an avid reader, a life long book worm but i could never read any book twice, because before i'd get to the end of the first page, i'd remember everything, everything lol it drove me batty. Then after relapsing hard for a few months, someone gave me a popular series (5 thick books that soo wasn't my usual cup of tea), I read through them all and then picked up the first book and couldn't remember it like i expected. Wow, a first but i thought it was probably just the style of book, so I read them again and when i got to the end, i again picked up the first book and then i knew something wasn't right.
lol Instead of being happy about getting rid of a life long pet peeve, it actually freaked me out, it was more than not remembering the ' nitty gritty details' of the story, something i'd never experienced before, my brain just wasn't getting it into my long term memory and even my short term memory wasn't retaining enough of it. So what I did was re-read those 5 books, one after the other, knowing that the repetition would help to create a pathway to my long term memory.
A 'normal' brain requires 3-5 exposures to retain, a gifted brain typically only needs 1-2, well my gifted brain wasn't working right so I opted for 5 exposures to see what would happen. Along the way i was testing what i could remember before i started a chapter, it got better after each re-read but even after 5 exposures it still wasn't the same as it use to be but it was a start in the right direction. When it slipped after another relapse, i again picked up those 5 books lol today they are cemented in and even though i'm not a 'twilight' fan i could take your ears off ROFL, always method to my madness!
ps sorry i've written another unintended novel lol
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