Continuing to be disturbed, having a rant

[biowham]

So I've taken an MD break and won't see another neuro or have an MRI until October.

BUT...things bug me, still. It's been awhile since I've Googled around because I'm pretty sick of all of this. I'm on my eighth month of symptoms, which seem to somehow slowly and steadily worsen. No remissions here. My right foot began in October with paresthesias that extended up to my leg. Now, those are gone, but both legs are stiff, exhausted, weak, tired...the other day, twice, I stood on one leg to bend over to get something, and it just gave out on me, seemingly near the hip for some reason. My fingers twitch and jump--thumb and pinkie on left hand--which is kind of unnerving. All my NCT/EMG is essentially normal. Right foot still tingles a lot and is very stiff.

Neuros so far have been dismissive of the T2 hyperintense foci in my brain (I have ~a dozen or so). They've dismissed my reflexes (hyper, clonus, Hoffmans), saying I'm just "diffusely hyperreflexive." They've dismissed the zaps I get across the right cheekbone and over my eyebrow. I've had three vertigo attacks so severe (but thankfully only a couple of hours) lately that I've had to prop myself on the wall while the room tilts sideways.

And I'm tired. Very very tired.

One thing I'm pretty sure of is that this is NOT a t-spine herniation thing. It *feels* central, in my brain, if that makes any sense.

I don't know why I'm posting this. I guess that it's frustrating to read things in the medical literature that seem so relevant only to be completely dismissed by neuros. I haven't even bothered to tell them about eye stuff that happens as I type (color desaturation, mostly). I'm sick of them, honestly.

One question: Is it normal to have white matter lesions in the brain at age 39/40? They're there on sagittal and axial views. Is that normal? Two neuros have just thought they were "nothing." Three (maybe more, but who's counting) are >3 mm. I also have a "nonspecific" cord myelopathy in T-spine above herniations.

Sigh.

Thanks,
Bio

[biowham]

Thanks to you all. It helps.

In most ways, I'm completely resigned to a long journey, just sitting and waiting for the next MRI. BUT...what bugs me is that *I* learn from the same literature that they must read too that certain things are relevant or important...and then they tell me these things are irrelevant. Drives me up the wall, and sometimes, I lapse back into the frustration of wondering why it *doesn't* matter for me and my diagnosis, but it appears to be meaningful the rest of the world over.

Bio

[summer63]

That is exactly what I thought.  See ya!!!!  Do some of these doctor's think we are stupid.  Do they think we are not going to do research on this stuff.  Even if there were no treatments available, if you do have something like MS most people would like to know.

I hope you get an answer soon too.  Somehow I think it will be a long journey for me like many others to get answers.

[humming4u]

no treatments for MS...................really? say goodbye to him forever summer!
biowam, your on a journey, and the same road as so many of us,know now you'll never walk it alone now that you've come here.I am 2 1/2 years into my fight to be told the whats and whys,of how come i feel so bad. it can be very hard,and long sometimes.
may God speed your journey though,and keep talking to us
                                                                                          humming4u

[summer63]

I understand what you are going through.  I have a similiar situation.  This is the results of my brain MRI in February of this year.  I was 39 at the time.  "FLAIR imaging sequence demonstrates two focal abnormal bright intensity foci in the subcortical white matter of the left frontal lobe and about four to five subcortical bright intensity foci in the left parietal white matter.  A single lesion is seen in the right parietal subcortical white matter.  These are most likely due to chronic small vessel disease and ischemic changes."

1st Neuro dismissed everything and the last time I saw him he asked "do you need to see me again".  2nd Neuro at least did some test thinking a mini stroke.  Went to him today and all tests (Heart Echo, ultrasound of arteries in neck and blood work) were normal.  He has referred me to a Neuro downtown that specialized in stroke (which I can't get in until August 5th).  I asked him if we should do tests to rule out MS and he said maybe at some point we will but there is no treatment for MS anyway so lets not worry about that right now.  So I am still in limbo and it can get very frustrating.  

[wonko]

I am so sorry to hear about your situation, and though it is of little value, I can relate.  I'm only at months 6, plus I had a month-long break in there.  It gets strange to even be able to measure it in months, when EVERY DAY can be uncomfortable and confusing.  I try to go day-by-day, even thinking  of 2 more months of this is overwhelming!

I can also relate (somewhat) to your concerns about your MRI.  My brain MRI in Feb. had "bright spots," just a few, and they did not light up with contrast so I was told that lots of people have "spots" and it doesn't mean they have a disease.  I think my spots are smaller, and  in the wrong place, to be typical of MS lesions.  I was just shy of 29 when the scan was taken, and if  I knew THEN how I would feel NOW, I might not have been so satisfied with that lame explanation (if you even can call "nothing" an explanation!!!!!)

And I say rant away!  It's my impression that for everyone of us who posts, there's many more shy readers who feel less alone when they read these posts.  That's how I started.  If I was going through this "pre-internet," I am fairly certain I would have had myself committed by now.  I'm sure none of us imagined having these odd things happen, let alone how frightening it is to not feel supported by doctors!

Besides posting to keep sane, I'm also debating having the serenity prayer tattoo-ed on my fanny.  That way when I moon my neuro, it'll have deep meaning.

Hope you feel better!

[essdipity]

I do sympathize with you. It's absolutely maddening to get nowhere with neuros. I was in that boat for 7 years, off and on, but luckily for me most of that time was in remission. So rant away, you deserve it.

I CAN answer your question. No, it is NOT normal for someone your age to have lesions. For any reason. Period. Are they certified as actual lesions? Sometimes there are 'spots' on MRI that could be artifacts or some such, but assuming yours are true lesions you are not getting the right medical help. If you haven't had 3T MRIs, you should push hard for that for next time. Meanwhile, feel free to rant.

Best luck,
ess

[spastic]

Hey Sweetie, I hear your frustration with this.  I am sorry these Dr's are not giving you answers, but please don't give up, I think you need a new round of Dr's.  There is something going on with you and these stupid Dr's need to get their as-ses together and get a treatment plan for you.  Can you be referred to another neuro?

I don't know anything about the white matter lesions and I'm sure others will answer that for you.

I am here for you Sweetie, I am sending many cyber hugs your way.

Love,

Ada