Good morning (or evening) everyone. Best wishes to All. Let me apologize in advance, for the lengthy post.
After an MRI of the brain, a few months ago, I was told that I do _not_ have MS. I do have several lesion on my brain (I posted one MRI slice with my Profile pictures), but they're not big enough, nor are they in the right location for MS, and are thought to be due to migraines.
My Cardiologist thinks my symptoms are due to Dysautonomia with Mitral Prolapse Symptom. My symptoms fit very will with this, but there's no definitive way to prove this condition (and, I don't show up with the requisite Prolapsed Mitral Valve any longer .... misdiagnosis of this condition was common 20 years ago), and the beta blockers are not alleviating the symptoms.
The two most debilitating symptoms for me are fatigue (its not the normal kind of fatigue), and cognitive issues. I was wondering if those of you who've been diagnosed with MS and have cognitive issues, would be willing to discuss them. Due to the above symptoms, I'm currently unable to work.
My cognitive problems will come and go. They can wax and wane over a two week period, but in general this will last 2-4 months, and then get better. Then, eventually come back and do the same. Go away for a year or two...and then come back. Its been doing this since my 30's (I'm now 52).
My cognitive issues consist of simple memory lapses, and inappropriate logic. For instance. I will lose the ability to tell the difference between the present and the future and deal only in absolute values of time. I'll miss meetings because I'll keep thinking the meeting is yet to occur, even though its already past. I can be and hour late and still think that I have an hour yet before he meeting. I _can't understand_ that if its 3PM, and I have a 2PM meeting, I'm not going to make it to the meeting, And then when someone calls me on it, I'll get mad at them and think to myself "what a a-hole" for suggesting I'm not going to make the meeting (this is after I've argued with them endlessly, that I'll be there, and they keep on pointing out that the meeting is at 2PM and its now 3PM).
The other day I ran a red-flashing light. The whole time watching the cross-traffic, thinking to myself to be careful, because the cars didn't seem to be slowing down. I had the red light, knew I ahd the re-light, but for some reason I kept think that the cross-traffic should be stopping. I ran the red light, forcing everyone else to panic-stop, and the whole time I'm thinking "what's wrong with these guys! I have the red-light!" It really upset me and I kept thinking about it, eventually, after about 30 minutes, I figured out that me having the red-light meant I should have stopped.
I've be working on Projects at work. Long term Projects where I attend meeting every week. Then one day I'll discover that I've not been attending meetings for a month. And totally forgot about the Project (I'll have to go through my notes to re-discover the Project), Its very scary when this happens.
There are numerous faulty logic issues I go through during these episodes, I just can't seem to remember any good examples at the moment
Yeah I have heard MS cognitive problems to be compared with being in a fog.
My MS fog consisted of little gems like I forgot how to spell Utah one day. I tried to sound it out, thought of looking it up but then remembered that I couldn't spell it to look it up! I have lived in Utah all of my life! Another time I got lost driving on my street that I live on... my kids didn't know what I was doing turning around over and over driving up our street and down the street... I was sooo lost!
I also went to a neighbors house and didn't recognize that the house was blue and not yellow like mine until After I threw my garbage away in their can then couldn't open the back door.
I have driven on a baseball diamond wondering why there were so many fences and overshot my jury duty address by 30 miles.
THe driving issues seem less if I stick to driving in daylight.
I eventually remembered how to spell Utah but I have trouble with names.
... or if my kids say they will be home at 6 sometimes I panic at 4 thinking they are an hour late.
Cognitive issues, especially the ones you describe, are very typical for MS. If you haven't gone for a second opinion yet, I would do so. Lesion formation (even in non-typical areas) and symptoms disseminated in time (over a long period, not just a one-time thing) are enough for you to question the first diagnosis.
The reason I don't drive any more - or not much - is because my decision-making can't be trusted. I'll do stuff that I thought was a good idea at the time, but after I've done it I realize what a bad idea it was. This is one thing when you've started the water boiling for the pasta before you start the sauce, but it's another thing when you're behind the wheel of a 3,000 lb. machine.
I have, and have had, a lot of weird symptoms. I think the weirdest thing is going back in time. It's hard to describe. But every once in a while, I'll feel like it's ten, or twenty, or five years ago. Even though I know where I am, I'm expecting to be in the duplex, or I'm surprised at this man getting in bed with me...
Ordinarily I don't suggest this, but if you know where your lesion location is, take a look online and see if you can find a brain map. While lesion formation and symptoms don't always correlate, you might be able to find some suggestion of why you're having these symptoms.
I had to have a neuro-psychological exam and it showed that I am slow at processing information, cannot retain much new information, short term memory loss, severe loss of dexterity in both hands. A neuro-psych exam is the best thing to show areas of cognitive problems. Have you asked your Dr. about having one of these?
Ditto what deborah 0904 said regarding a neuro-psych eval. I have had two . Both showed deficits in executive function. These deficits would disrupt my work where deadlines are key. Not acceptable in a law firm.
I would certainly go for a 2nd opinion and get tested. Oh, and I have issues with spelling , this after being state spelling bee champ back in my tender years, lol. Get it checked out. I also got 2nd and 3rd opinions as my MRIs showed lesions that weren't specific initially for MS.
OMG!!!! I do this kind of stuff all the time. I thought it was just me going crazy or something like that. I never thought of it as being associated to my MS. My daughter can and probably will tell you some good stories on me. She just recently joined our forum family but hasn't posted yet. She also has MS symptoms.
I have not yet been diagnosed but am in the process of seeing a MS neuro and redoing the MRI.
I have had these issues which were very concerning for me, I was actually stopped at a red light one night on my way home from work the next thing I know I am driving through the red light. WHY DID I JUST DO THAT??
I had taken my grandson, 18 months to the store with me a week or so ago with my daughter and another grandson, we got to the store and my daughter told me to turn around and look at him--he wasn't buckled into his car seat!!!! I felt sick to my stomach, that I had done something to put my family in jeopardy.
I have also forgotten my bosses name and frequently can't find the words I am looking for to complete a sentence.
I know how you feel...
My Neurologist had suggested a neuropsychological eval, but lost interest in it when my MRI came back "normal".
When I first started having cognitive issues when I was 30ish (I had trouble understanding people, trouble understanding computer program code I taught all the time, text would all of a sudden look like Russian... all backwards looking. I could have a meeting with my Boss, leave the room, and immediately forget everything I was told), I had a neuropsychological eval and it showed impairment of my short-term memory, concentration, and other cognitive issues. They Said there was evidence of organic brain damage, and blamed it all on the encephalitis-meningitis I had when I was four. Same thing with my balance problems. These issues, come and go every few years, but my memory and concentration never recovered (previous to my 30s I had an amazing memory)
I think I'll see about having the neuropsych test done (I was dreading it because its so exhausting), and a second opinion too.
I have to say that your cognitive problems seem far more serious than those we usually see. Yes, many of us get lost, forget how to spell, and can't tell time, but your description of not being able to understand repeated explanations of what is wrong seem far in excess of the bloopers we usually see. While we might not immediately recognize our house and drive by it, turning around over and over - well that seems severe.
This does not mean that your congitive problems can't be due to MS, but their severity makes me worry about other problems.
To begin with, I would heartily recommend that you get neuropsychological test as they talked about above. This can help sort out which areas of the brain are being the most affected. They can recognize patterns of problems typical of different disorders. I don't have a specific disorder in mind.
As a pediatrician I find it ludicrous that anyone would blame the meningoencephalitis at age four for problems that showed up 26 years later. If the damage was done at age four, the problems would have shown up at age four. If anything, because of the neuroplasticity of the brain any such problems due to the infection would have improved by now. So, that is hogwash.
This cognitive problem is severe enough that I believe that it might warrant a spinal tap to rule out a chronic meningitis. Another test that is diffeicult to get and may be expensive is a "functional" MR Spectroscpy or a PET Scan. No, just having the family dog sniff your head won't work for this! :))
The relapsing nature of the cognitive problems is very interesting. I have not heard of "just" cognitive relapses, but I do not know that they couldn't be the only manifestation of MS. I'll see what I can find out.
All of this sounds very disabling and horrible! I'm sure you live in fear that you'll do something that endangers your family or your job.
Yes, pursue any additional opinions you can.
Have you have a really thorough neuro exam? Other than mental status, was it completely normal?
My boss once told me "Why won't you listen to me?" I told him "I am listening, I'm just not understanding you!" I'm not sure where that fits in the cognitive puzzle - is my auditory comprehension out the window? Sometimes somebody will tell me something, and not only do I fail to understand it, it's like I hadn't even heard them - even though my brain registers the information. I'll continue talking with the old set of information I've been working from, while the person keeps trying to tell me the new info.
My neuropsych exam showed many areas of impairment - I definitely recommend it to everybody that's worried about their cognition.
I'm not sure how thorough the neurological exam was... it was pretty quick... but it did cover the basics. My Neurologist checked :
My walking (which is fine, this time around)
My reflexes (which were hyperactive on one side of my body. My right toe did not respond, when the bottom of my foot was scraped).
My ability to distinguish between sharp and dull objects (the sides of my left fingers had places where I could not tell a sharp object from a dull object, and other places where the sharp object felt so intense I nearly jumped out of my skin when it was touched. I have several compressed disks in my neck, and a compressed nerve root, and this may be due to that.)
I had the brain MRI (normal, but with lesions that were said to be too small, not in the right places, and thought to be due to migraines) and a VEP (that was normal). She was going to perform MRI on my cervical and thoracic spine, but said it was not needed since the brain MRI came back normal. I was also tested for Lupus, and Myasthenia (my Family doctor tested for vitamin deficiencies, and typical blood work)
Quix, just to clarify... I don't have "just" relapsing cognitive problems. The cognitive problems are usually what bothers me the most. Typically (though this time was a bit different), what happens is every 2-5 years I go through a period of 4-6 months worth of problems that wax and wane over a 2-3 week period, then eventually go away (simple, huh?).
These problems are usually:
1. Cognitive issue (as described previously)
2. Severe fatigue (mostly mental, and unlike normal fatigue. I used to work 70-90 hours per week, and was never as tired as I am now).
3. Balance issue (but only when walking. I weave from side-to-side like I was on a ship).
4. Mood swings throughout the day
5. My tongue goes numb and I slur my speech. The left side of my face and neck goes numb in a specific shape. I have difficulty swallowing and choke on food.
6. I have feelings of hot and cold water running down my right leg (usually my calf).
7. My tastes change all of a sudden (that stays, until the next episode)
8. Constipation/diarrhea (alternates).
9. Urinary stress incontinence.
10. Sensitivity to heat (intolerance to physical activity in a hot environment. Even a hot bath can make me weak)
This time around things were a bit different. I did not get any balance/walking problems. Nor did I get slurred speech or numbness on the side of my face. Nor did I have issue with urinary stress incontinence. The hot and cold water feeling was much more intense, and moved to my right thigh (instead of my calf). The bowel issues were more severe(I lost 15 lbs due diarrhea). The fatigue was more severe. My sensitivity to heat was more severe(ended up in the ER). I also developed some weird breathing problem. I can breath fine sitting up (and better if I lean forward), but I have a very difficult time breathing when I lie down or at an angle. I t feels like I'm breathing against resistance). I've had my lungs (hey, at least they found the aneurysm!), and bowels tested, and all was normal so far. Sick of tests.
Yes, I've always lived in fear of being fired when I have these events. But I don't have to worry about it anymore. This last episode was severe enough to force me into medical leave (People notice that I was having trouble thinking and understanding the problems they were describing, and the solutions proposed, and notified my Boss). I was laid off when I came back to work.
Oh well... sorry for the length of the post.... and thanks again to you, and everyone that's responded.
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