Hello, and welcome to our group.

This group is not a pity party group. Everyone has valuable information. It is shared and passed around. It is a group that helps to support others when others feel there is no help, or no understanding. And like Julie in TX said...you couldn't have described it better! Some of us...have symptoms that we don't even realize are symptoms until someone else in the group talks about them. So there is really a diverse amount of knowledge generated from and thru this group.

I was dxd with MS 12 yrs ago with slow progressive MS. I do have seizures with my MS. I also have several other disease that seem to run right along with MS. I had a total of five different doctors. Four of which had no idea as to what was wrong with me. Then my fourth doctor got an inkling and sent me to a neuro. The neuro put me thru my paces with so many different tests and every thing anyone did to me came back with a result that I was a normal healthy woman...yet I had attacks between every 5 to 7 weeks. My neuro didn't want to call it stroke, heart attack or MS until he had a confirmation of it. He was down to the last possible test he could do on me and he was getting worried. The last test he did, he did himself and it was a spinal tap. It showed abnormal bands. And he was beside himself when I went to see him that day. He said he knew exactly what was wrong with me. It took him 5 months to narrow it down. I had MS! I have learned a lot about the disease. I am not on any meds except for the seizure meds. Only because a seizure cost me my driver's license and my left elbow. (I had a car accident while driving home from work.) I haven't driven a day since, that has been 5 and a half years ago. So I know how frustrating it can be not knowing...is it, or is it not, MS! Some doctors don't like to just label it as MS, they want to know for sure that it is MS. So they use a process of elimination system for that confirmation. My neuro is also an MD, Phd. And I have resently found out...he is the lead neuro on MS in my state. But as for your Neuro's? I'm sorry I cannot help you there I wish I could.

I'm truely sorry your wife has MS, as I'm sure the rest of us would gladly give it up if given a chance. But I see it in a Pollyanne type thing I guess. 1. Any day above ground is a good day. 2. I'm not suffering the agony of AIDS. 3. I'm not suffering with the agony of Cancer. Yes, I have pain, constantly. I live on the edge of death every day when I get up in the morning, if I can even get up that morning. But hey, it's one more day I get to see my kids and grandkids. My prayers (if you don't mind them) go out to you and your family.

Su in Oregon




mfr14 com> wrote:

Hello,
I got my wife to join this group to get some of your thoughts, but
she's been too busy to post. So, I'm gonna act as her agent, as it
were....

Back in September/October she began to have these sensations in her
brain that we began to call "whooshes," like there was motion in her
brain from one side to another. Sometimes it felt like a shadow
passing in front of her eyes. All sensations no more than a second or
two. This brain activity varied in intensity; some days a few or
more, some days dozens. No loss of consciousness, no loss of mobility
or change in sense of time/space. She found that hot showers
sometimes intensified the activity. In the past few weeks she's had
tingling in her left pinky and thumb. The past few days she's had
muscle spasms in her left hip. She says that sometimes the brain
activity is like when you get the head bobs sitting up too late at
night watching t.v., but the sensation is all within her head, like
her brain is dropping for a split second.

Diagnostically: her m.d. ran her through all sorts of cardiovascular
tests, all negative; all bloodwork has been normal; normal eeg,
normal echocardiogram; normal cat scan. Last week, her mri came back
with a number of "spots" (lesions). The neuro said it can't be MS
because of where the spots were (we know that MS spots can appear in
many places). This is the same neuro who said, on his first
examination visit with her, that she had adult-onset epilepsy, based
solely on his conversation with her. "Sounds like seizures," he said.
And promptly reported her to the DMV for suspension of driving
privileges. Two weeks later, after the MRI, he says no to MS. "Could
be related to your migraines," he said, and ordered a transcranial
doppler test to see if it's blood related. That is, the spots in the
brain are not MS lesions but ischemic damage from unfiltered blood
(small hole in cardiac septum allowing unflitered blood to deposit
crud in brain). She had migraines off and on up until her first
pregnancy. She's been virtually headache free for the past 15 years
since then. She's 45 y.o.

I'm sure I'm leaving a few things out but does any of this sound
familiar; does anybody have a clue where to go with this? We're gonna
get a second opinion from an MS specialist in the next few weeks. But
until then, we're getting a bit frustrated with the medical guessing
game.

Any insights are appreciated in advance.

Thanks.

MFR and husband.