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MS post hyst? MS post hyst?

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Unread 06-11-2003, 10:48 AM
MS post hyst?

How many people have MS post hyst? How were you diagnosed?
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Unread 06-11-2003, 02:32 PM
MS post hyst?

Hey Anj, good to hear from you hope you are keeping well!!

My Mum has MS and coincidentally was diagnosed about 3yrs after her hyst, I have been sent to a neurologist and had a CT to look for MS because I was having alot of the same problems she was which seemed to pop up at about 2yrs post hyst, nothing showed in my CT.

Unread 06-11-2003, 03:48 PM
MS post hyst?

Hi Anj! During the time when they were searching for that elusive diagnosis that would explain all my mysterious ailments, I had a CT scan done. I was told that lesions on the brain or spinal cord indicate MS. Mine, however, only indicated that I do, indeed, have a brain. Hope this helps ya some.
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Unread 06-11-2003, 04:00 PM
MS post hyst?

oops! I guess I should've said "mine showed no lesions" not my CT showed nothing re:"vbjacks5 post"
Unread 06-11-2003, 04:09 PM
MS post hyst?

gidge! I didn't catch that until rereading your post. When I returned to my GP (at the time) to get the results, he walked into the room and said, "The good news is that you do have a brain." I'd hope!
Unread 06-11-2003, 04:11 PM
MS post hyst?

I know, your post just cracked me up and then when I looked back at mine I thought "oh oh" .........
Unread 06-11-2003, 08:36 PM
MS post hyst?


I just went (or maybe am still going through) a work-up for MS because of weird episodes of double vision that have come and gone for past 8 years and are more frequent since my surgery. I do know that stressful events, such as surgery, can aggravate some forms of MS (the relapsing/remitting kind, I believe).

Diagnosing MS is very tricky, because it can present in so many different ways. I think there has to be clinical evidence of 2 kinds at separate points in time. People usually go through MRI of brain and spine, evoked potentials (that test the integrity of the nerves), and lumbar puncture. The history of symptoms is also very important.

I'm not sure why you're asking, but I do think it can flare up after surgery.

Unread 06-12-2003, 05:54 AM
MS post hyst?

Good question, Anj--
I've just been diagnosed with carpal tunnel in both hands and tarsal tunnel in one foot; the specialists have asked my PCP about an MS workup, nothing yet.

I'm guessing it's odd to have the nerve problems in multiple areas at one time (?)

So glad to see you back!
Unread 06-12-2003, 06:41 AM
You've been kind enough to share with me...I owe you an 'splanation

Ok gals. You've been kind enough to 'share' with me. And I guess I should 'share' with you.

As some of you know, I had a very serious string of relentless physical problems post hyst. Although I don't like to admit it, it was no different than before hyst, except they became more frequent and much more serious in that I could no longer do some of the things ....ok, alot of the things that I was used to doing.

I refused to admit that anything was wrong with me until I had an "electrical shock" of somekind that woke me from a dead sleep and I suddenly was blind in my left eye. From there, things got worse...I won't bore you with the details.

Eventually, I had my gall bladder removed and had to have a subsequent surgery to "unblock" the common bile duct and the pancreatic duct - that blockage caused pancreatitis. I thought, after surgery, and several weeks of rest - that this had been the source of all my problems. I was relieved and happy that it was over. Finally, blue skies ahead.

Then, sure enough, when I started working again and was no longer 'resting' the mysterious symptoms returned. Now, I'm not saying this is what I have.

I went through a work up a few decembers ago for MS although my doctor didn't tell me that's what it was at the time. They lost my results. The doctor said he thought I'd had a mild stroke that left no permanent damage. Ok, I thought, that's it then. Pop an aspirin a day and forget it.

Well, the last 2-3 weeks have been pretty bad for me. Tremors that are visible to others, blank memory, inability to dissiminate between certain colors at certain times, no recall, no reasoning power, tremendous mood swings that do not seem to correlate to hrt (finally that's ok), 'electric shock feelings' that usually are followed by uncontrollable tremors, extreme fatigue, forgetfullness, and usually double vision or blindness soon follows along with extreme dizziness and sometimes fainting.

The ONLY thing that helps is flat on my back resting. Then I'm right as rain, until something happens to stress me out (like that's not enough), fever/illness, or I'm extra active (extra active for me anymore is doing approximately 1/8th of what I once could do 3 years ago).

I'm not a person who dwells on herself. If anything I have a bad habbit of understating things. I've always been a person who has a tremendous amount of pride in being independant. All of my family chide me over being 'too independant' and being in 'denial' of how seriously ill I've become.

I know that even despite my posts you all may find this hard to believe. But I can tell you all this, that I'm afraid to admit to myself,my doctors, and even my family. Most of all my family.

I read a post that I just tripped upon the other day. Someone, I forget who (no pun intended) posted about an MS trial where they were using ESTRIOL an estrogen thought to only be produced during preganancy to stabilize people with MS. I looked at it only because I have a great interest in compounding pharmacies (have a couple of friends who do it and know countless women who's lives have been changed by it -- including mine). As I was reading it, I thought, you know I don't really know anything about MS - what does it really do? So I took a look....EVERY symptom in the 'wax and wane' aka 'attack/remission' kind stood out. I have EVERY one of those things. And have had for quite some time.

After the stroke diagnosis, my DH wanted me to see someone else. So did my GP. But I brushed it off and told everyone to stop worrying and to 'Get off my back'. That's another thing, I have a hair trigger temper that far exceeds the one I used to have. But now, I look back through my journal, my work, my life and there's parts I can't remember. I don't recognize my own handwriting or my words.....or my thoughts/feelings. Not just in a benign way, but much more insidious way. In a way that scares me. Like forgetting which color on a street light means go. What the ages or birthdates of my children are - and I don't mean for a few minutes of lag time -- I mean absolutely FORGET. I had to look it up. I was too ashamed to ask anyone. Like forgetting languages (computer) that you've known fluently for 20 years. And there's other things....

I've had inflamation of the optic nerve several times. I was given injections of steriods and pain killers (anesthesia) to put the headaches at bay. I do have other auto immune diseases like endometriosis, ibs, spastic bladder, and what has become something more serious than it's more like a total black out at times. There are conversations and events that I just can't recall. That's SO not like me. I could always remember practically anything....practically forever. Now, I'm shakey can't remember - I'm SO unsure of myself. Scared.

Truthfully, I was scared before I read about MS. In my heart of hearts I just knew something was wrong. Ok, I KNOW something is wrong. It's that death-knell drum beat in the back of my mind that keeps reminding me, "this is serious". But being the person I am, I brush it off. I have to keep going. I have people to care for. Things to do. Things to accomplish. And now I can't.

When I have an "attack" I literally cannot do anything. I can't drive myself (too dangerous - I've had 3 near misses in just the past 5 weeks), I can barely stand, and I can't eat.

It's reached a point where I'm not afraid of knowing anymore what this is. I NEED to know what this is.

FYI: I even left the boards for a while thinking that if I did maybe this was just a figment of my imagination and it would go away if I didn't dwell on it and separated myself from things that reminded me of it. It worsened anyway.

My little finger of all places, keeps tremling and jerking to the point that I can't hold a book when it's violent. My leg jerks so that I can't walk when it happens. And I never really know when it's going to happen except for a change in my vision where everything is "greyer" than normal and "flat" and sometimes blurry...sometimes I can't see at all. And EXTREME fatigue. I never knew anyone could be that tired and still be alive. The spasms happen all over my body. Sometimes my abs jerk like I'm hooked up to one of those electrical stimulators that they give pts with muscle atrophy.

And I'm not out of shape. I'm a trim, fit, 5'3" 110 lbs. who used to be a dynamo. Now a dinosaur.

Opinions appreciated.

And I wasn't asking because I think it's hyst related. In fact, I've always had a "touch" of these things. The pelvic pain being the worst. But post hyst the pain and symptoms worsened to a new alarming level.

I'm just not sure what to do anymore.

PS I forgot to mention that I walked around with a compression fracture in my right arm for 8 months because the sensation just wasn't there. I had total body pain that FAR exceeded that pain. Now, even on a good day, I have trouble describing that pain.
Unread 06-12-2003, 07:02 AM
MS post hyst?

Dear Anj,

Wow, that certainly is a lot to deal with! Have you ever had a thorough neurological work-up? It sounds really indicated...Optic neuritis in particular is often associated with MS, I believe. And the tests I mentioned earlier are no big deal (MRI, etc.), and if there is evidence of lesions, there are drugs available now to help.

It can be important to get this checked out, even if your symptoms remit, as they sometimes do after a while. I've read that nerve damage can still be happening and they have better meds now to control it.

What I would really advise, though, is to go to a really good neurologist, preferably at a large academic teaching hospital.

The other thing I wonder about, frankly, is seizures. Has that ever been suggested?

Please get checked out--your symptoms are really alarming!

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