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MS post hyst? MS post hyst?

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Unread 07-24-2003, 01:37 PM
MS post hyst?

Just wanted to send a great big to ((((Lily)))). I've been wondering... and worrying... about you and am relieved that you're still around. So sorry you're still going through all of this hardship and trying to find out what exactly is going on. Sending lots of your way. You know that your Hyster Sisters love you.

((((Ang))))) So sorry things are still going hard for you. I understand your concern with the water: I live in an area where the rate for cancer is simply hacculinating... it was over 54% in 2000 and, if it continues at the rate it's been increasing, 75% of the population could be affected by 2005!!! And water and environment are definately a consideration, as well as diet and the fact that we have the highest rate of smokers in the country.

Take care, both of you... you're both in my thoughts in ers.
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Unread 07-24-2003, 04:19 PM
MS post hyst?

Oh I'm so glad you saw this Ang! I'll email you and we can exchange various weirdities OK

A huge hello to everyone, Kim. Gidge, Dany.............sending big hugs, I miss you all heaps, don't know how we all ended up on this road (well I do but that's only been part of the story for most of us I suspect!) For some of us it brought things out of hiding when 'female' problems were blamed for EVERYTHING most of our adult lives........sigh. Surgery/ trauma/sustained stress of any sort can sure reveal a lot of things hiding under the surface.

However I couldn't have picked better company for my journey, that's for sure

As far as MS goes it along with Lupus are VERY hard to diagnose in some with any certainty until the disease progresses or you have an acute exacerbation, causing permanent obvious damage. Some are diagnosed quite early when everything falls into place, you strike the right doctor, you have megabucks for all the tests etc. LOL. In others their immune system tries to regulate itself and battles along for years, making it hard to pin down until progression and deterioration reveal it.

They don't know what causes MS or Lupus for that matter for sure. Various things contribute, I would say you have to have the genetic make-up for starters and something can set it off. In Lupus the main culprits are allergies, hormones, stress, viral infections. Similar with MS but they think there may be environmental chemicals and certain viruses implicated. It is more prevalent in temperate climates for some reason and they think there is a link with vitamin D - sun etc. It's the luck or misfortune I should say that determine whether an individual will develop these. A LOT of things go into the mix to arrive at that point. There are certain criteria for diagnosing each disease and the docs follow these strictly for a very good reason they are both an 'individual' thing depending on your make-up, no one person will have the exact same presentation, we're all wired slightly differently. And both mimic a LOT of other things, with at times seemingly unrelated bits of a puzzle, it takes a good doc to put all the pieces together and it takes time to do this.

As far as testing for Wilson's copper disease goes it would go undetected in many, it can be fatal if untreated, but it is a fairly rare disease. It's not the accidental consumption of copper, it's the bodies inability to clear it that is the problem, it's a genetic thing. Presentation is usually with a wide array of neuro stuff and sometimes a wide array of physchological symptoms. It is a genetic disease, it is passed on in a certain percentage of relatives. They test serum Ceruloplasmin and copper, they then test 24 hour excretion of urinary copper and then if Neuro symptoms are present (this may not show up until 30's or 40's) then you usually have what are called Kayser Fleisher rings around your cornea in your eye, only detected by a slit-lamp exam done by an Opthamologist. These are the criteria, along with physical exam by a Neuro who can demonstrate abnormalities.

The first Neuro didn't even test for it,or anything much for that matter, she just said I had a dystonic tremor, did the MRI checking for MS, Vasculitis or pituitary tumour (they didn't even get that right) . At that time it was in my neck, now it has progressed they wanted me to see another neuro. I don't think anyone was too impressed that the first Neuro didn't look into WHY I may have had this. But that's the story of our lives, it takes a lot to find a doc who is willing to go that extra mile to sort out your problems and it takes a lot of cash. I am not the least bit impressed that they muffed my lumbar puncture, but it did provide clues along the way, it ruled out some stuff and it revealed others because the Rheumy had to investigate a lot of things. He did not follow up on my Ceruloplasmin level, because it was just below par . But to the neuro it meant something along with symptoms. They also told me my complement levels were OK when they weren't. They meant well, they did not want to stress me out LOL! but they have no idea really. Not knowing is worse than anything they could tell me. I think they concentrate too much on the stress angle and the hormone/psychological issues when dealing with women. It's easier that way. They don't have to do the hard yards.

I wish for all of us perfect doctors, who care, who are willing to go the extra step. Angie I am so happy to hear that your address at Vanderbilt brought about some changes that may help women with Endo. It took a lot of guts to do it, but you cared and you wanted to make a difference............and you did, with some help from your friends here it brought the truth home to some of those young docs, it made them face reality about how some women's concerns are all too easily brushed aside with disastrous consequences for them and their families.

It's something we have all come to realise during our time on the road, that it is up to us to try and bring about change for our daughters, so that they will not have to face some of the rubbish that we have had to put up with. It's about believing in yourself and having the courage (and energy which at times is very hard to find LOL) to follow it through. Something we all have I think, courage, not that we really wanted to have to find that strength , but when faced with our situations we did just that, we faced them. We didn't cower and hide away and say what can I do, we made a noise, to better our own health and try and make it easier for some that follow. It's a small step but in the big picture it will make a huge difference to future generations, encourage others to question things and keep docs on their toes. After all if they aren't aware of the impact these things can have on our lives and we don't voice it then they won't address our concerns. We are extremely lucky that we have the resources and access to knowledge to go through with this journey, we are very lucky. I know sometimes we don't feel that way, but it helps to try and concentrate on positives, it helps us move forward.

Love to you all,

Unread 07-24-2003, 04:29 PM
MS post hyst?

gosh I missed are such a fighter Lil and we are proud to call you our sister, keep in touch when you can!!
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Unread 07-24-2003, 05:29 PM
MS post hyst?

And I've missed all of you too Gidge

I have a lot of good days, well relatively good as opposed to others, it's not all doom and gloom I'm very lucky that I did fight, I feel very confident in my Immunologist and so I should he is a Professor at one of the top Uni's. There are days I could slap him LOL but he basically saved my life a few years ago and continues to be a huge moral support when things get scary.

More on MS CT scan showed nothing!!!!!

...........I had one with dye around 8 years ago and my symptoms subsided so I didn't pursue it. I had one a couple of years ago with no dye and it was clear, but my symptoms made them do the MRI. It showed a couple of bright spots in my frontal lobe, they didn't use the dye to see if they were active (silly Neuro). In February I had another MRI and it showed 5/6 bright spots in frontal lobe, but they did not light up either, so they were not active but there were more than last time. None of these spots show demylinization but that does not rule MS out if it's the r/r kind, there are no absolutes in any of this. As far as I know my spine is clear, but they are not that forthcoming with fine details. However I do trust the Sydney docs to do the right thing.

I have blurred vision and no vision at times after the sun/heat. I can trace this back many many years. But it passes. My symptoms are a LOT worse in Summer, by the end of summer I've had it. I have had red eyes for days after they have shone the light in my eyes, I have the tremors, I have pain and weakness, but the weakness usually goes.Except for the severe pain in spine last year that resulted in my bladder and rectum prolapsing. This happened after coming off cortisone........every picture tells a story eh? My BP is quite low normally now 100/60, but drops suddenly lower at times: viruses, flaring, too much heat/sun etc. I have momentary seizures and my co-ordination/balance and brain function is pathetic when flaring.

Note I said when flaring............I was soooooooo lucky to be flaring last visit, he demonstrated it all and was shocked, hence the referral to the new Neuro. That's why it can take time, they need to witness all this or have a doc witness it and put it in writing. It takes time..............grrr!

The article you pulled up about the stress hormones/cortisol etc is very interesting. My doc has now admitted that them giving me the Synarel/estrogen/antibiotics etc, drugs for surgery has really stirred things up with my immune system, the basis was there already, but it really stirred the pot. My body has so much shuffling of hormones to do and does it constantly to try and control this (hence my never ending jungle journies in the early days lol) . I am extremely sensitive to hormone shifts and they suspect my body has done a good job trying to regulate my immune system itself until placed under enormous pressure from surgery etc. Likewise my kidneys, where some hormones and blood pressure are controlled..........I have larger kidneys than your average person..........they don't know how that came about. But they suspect ithey may have been present from birth(natures' way for survival??) or they have adapted over the years to try and compensate. Unfortunately as we get older we lose immunological control to a certain extent, that's why these things seem to 'suddenly' appear. They were always there, just that our body can't cope like it once did. It's called advancing years <sigh> and I'm not sure I like it I wasn't ready for these surprises, but like you I can ignore so much, comes a time we need to find out. It doesn't make us whingers or whiners, it makes us someone looking for answers/solutions to what seem like unbearable exacerbations of unknown origin. Once we get those answers we can start our road to better health hopefully.

Unread 07-25-2003, 06:11 AM
I hear ya lil. I hear ya.

Unfortunately, it seems, the more I try....the less I accomplish. Sometimes, I think, it's best to sit on your behind until something happens TO you.

I went to this doc in all good faith and they actually said, "I don't think we'll ever find out what this is until the autopsy". Oh well.

I'm VERY thick skinned. So that comment didn't hurt my feelings or even make me mad. It's just par for the course.

But I'm sitting there unable to write my own name because of the tremors and all they can say is, "I don't know". Time to fire another doctor.

In many ways, I AM better. I'm stronger, happier in some ways, and enjoying summer.

So...not everything IS bad.

Hugs to you all. anj.
Unread 07-25-2003, 06:31 AM
MS post hyst?

Hi just some input have you ever been tested for meniers disease, my husband has some of your symptoms dizzy, nerve pain, tremors passes out or something to that extent and double vision, when he has these he has to sit and take antivert and concentrate on something to keep from blacking out. his started after to flare up again after his open heart surgery.

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