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MS post hyst? MS post hyst?

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Unread 06-16-2003, 05:56 AM

What does the MRI show? Lesions? Is that how they tell how advanced MS is? How do they tell what kind you have? Who determines a dx? A neurologist? Or another kind of 'ist' ?

I guess I've seen em all over the last 5 years or so.

My appt is on Weds with my neurologist.

I had an eye exam on Saturday. They said that the optical nerve was not iflamed and that I did not have any lesions on the back of my eye (would show intermittent blood loss). She said that it might be "high cholesterol" meaning little platelets of cholesterol breaking loose in the arterial system of the eye causing intermittent vision loss. However, she admits that this doesn't explain the blurred vision, or the multiple-vision (double, triple, sometimes four of everything) or the dizziness accompanied by it. I didn't really expect her to tell me WHAT it was anyway. Just to rule out something wrong with my eyes (chateracts, eye diseases, bad/loose retina, etc).

My mom was dx'd with RLS but I think her symtoms go way beyond that. She has the jerking thing with her arms/fingers too. However, we lived in a rural area back then. She still lives there...and there's only one doctor in a two county radius. She's not comfortable with the dx, but she's on medicare and doesn't want to go to the expense of finding out. I don't blame her.

However, this is interfering with my LIFE in all aspects. I have to find out what it is in order to control it, don't I? They keep throwing pills at me, but I feel like if they don't know what it is....why do that? I guess I'm tired of feeling like a rat in a lab somewhere being experimented on. And besides, 89% of the time the meds make something else worse if not the original problem.

Like, 2 years ago they put me on a type of anti depressant. I later found out that tremors was one big side affect of that medication. So I patiently weened myself off that under a doc's care. I figured all would be well. Then, I had my gall bladder surgeries. All was NOT well. I tried to convince myself it was "side affects" from anesthesia. But, lets face it, four months after the fact, I can't really claim that now can I?
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Unread 06-16-2003, 01:38 PM
Interesting reading for possible MS / arthritis folks
Unread 06-23-2003, 01:12 PM
MS post hyst?

Angie, I just happened to see this post while doing a search
on estriol. I am so sorry to hear that you continue to have medical problems. By not hearing from you on the boards, I
assumed you were feeling great.
I remember that Jody, Fitbug, was diagnosed with MS
after her hysterectomy. She also had some vision problems.
Recently, I read on this board where Teri, Ilovemygavin,
was also diagnosed with MS. A long time ago, Jody began
giving herself injections to help with the MS. She said they
were having a lot of success with the treatment. Jody also
was starting a certain kind of therapeutic yoga exercise
that helps with MS. I have read that horse back riding also
I am only a lay person, but I had several reactions to your post. Jody and my friend with MS both had vision problems.
My dad has high cholesterol, and he started seeing double.
When he went to the opthamologist, and he was told to go to
a doctor. His carotid artery was blocked. Twenty years ago,
he had the surgery for cleaning out the artery on one side,
and five years later the other side was surgically cleaned.
This saved my dad's life. He is still alive today, doing great,
at 83. His twin brother never had surgery, nor cholesterol
medication, and died very suddenly over 15 years ago.
Another thing came to mind. Could you have a seizure
disorder? Could the memory loss be from a stroke?
I stopped HRT for many months. My vision was not good;
it became blurry at times and my eye was almost burning. I just started back on a little bi-est, and I notice a big improvement in
my vision.
When Jody was discussing MS, someone told her about
research on estriol and MS.
There are many pieces to your puzzle. It sounds like a
good medical work-up is in order. Please keep us posted.
Hugs and prayers to you, Angie!!!
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Unread 06-25-2003, 11:27 PM
MS post hyst?

Hi (((Angie))), I'm sorry I'm so late to this thread. Here's a link to Clare's (cmcm) thread where the estriol/MS info was:

There's also a thread going on in Pre Op right now involving gals who have MS pre-hyst:

I hope you get some answers soon.
Unread 06-26-2003, 07:36 AM
MS post hyst?

dear anj,

I hope your appt with the neuro went well.

I know from my experience that the diagnosis of MS is based on a history and clinical evaluation but also on "hard" evidence such as lesions that show up on an MRI, spinal tap (they look for specific proteins I believe), and evoked potentials test (for eyes, for instance). THe evidence needs to point to two different attacks (that is, involving two different neurological areas, such as eyes and leg muscles, for instance) separated in time.

I think it is very good news that your optic nerve seems fine, since that's often the first place where symptoms show up.

I still hope that you can see a primary care physician at some point, since your different meds and surgeries and other symptoms could point to something else going on.

let us know how your appt went!
Unread 07-23-2003, 07:03 PM
MS post hyst?

Well hello twin sister! I just popped in here as I haven't been in ages and found your post. I hope you get to read this. Going back to the same Neuro sounds like a good idea. Continuity of care is EVERYTHING when trying to diagnose some of this weird stuff. A good doc is pretty important as we all know.

Thought I'd fill you in on the status quo with me, it might be helpful.............

I have just seen a new Neuro....... I was referred to by the Immunologist I'm still under. I have loads of stuff going on like you, but he was baffled by some of my neurological presentations lately. I did the work up for MS in March (Rheumy organised it) Those lesions on my brain.......we still don't know what they are, they do not 'appear' to be MS lesions, depends which doc you speak to LOL! They were definitely not active Vasculitis or I would have been a lot sicker and they would have 'lit up' with the dye. On the list for me is still Lupus, MS or something like a mixed connective tissue disease, a combo pack in other words. It could also be early Sjogren's with CNS and blood vessel involvement they really don't know for sure yet and they are being super cautious until they do, they just treat my symptoms.

I did the Lumbar Puncture, repeat MRI and EEG etc. in March as part of the workup. They made a mistake with the Lumbar Puncture I found out.......... and did not take bloods on the same day as spinal fluid..........yes there is a black cloud following some of us around isn't there That may or may not have made a difference. My brain lesions did not light up with the dye,so they weren't active Lupus lesions - thank God for that. The EEG showed some activity (should have, I was having petit mal seizures last summer!)

My blood complement levels came back FINALLY indicating a major immune pathway has been's just a matter of time to work it out now. So much for the Fibro diagnosis..........the new Neuro confirmed what the old Neuro said, for now I definitely have Dystonia (but it's progressed from two years ago), it's a generalised, late onset type and that explains my tremors etc. This is usually accompanied by some other disorder. The jury is still out on the dystonia being a part of early or rel/rem MS but it could be. I have had Llermittes sign, I have Romberg's sign..... but my symptoms come and go....some are there all the time, some aren't.

So even three years ago when I was having the head jerking/the seizure type things after the op there were clues there. Just took them a while to eliminate a lot of other stuff!

So I have a mixed bag of weird things going on.
My current confirmed diagnosis are:

Livedo reticularis (inflammation of blood vessels)
Dystonic tremors (started in neck, now almost all over when flaring)
oh and my kidneys are still spilling blood and some protein (protein is not high or consistent so they aren't too worried right now will be looking into the kidneys soon though if it persists this summer.

With the dystonia I'm going for a slit-lamp exam and had some bloods, have to do a 24hr. urine etc. to rule out Wilson's Disease (copper clearing problem) because it can cause some of my symptoms. I have that end of September, follow up with Neuro in October.

Apart from that life is OK I'm learning to live with it most days.
I think mentally we are a pretty resilient lot, which is just as well considering some of the stuff we've had since our ops. I have not been able to go back to work and I have had to be Miss Perfect as far as diet, rest, exercise and sleep go (I cheat sometimes!) . It's helped but hasn't made it go away or stop progression. So I've jumped through their hoops and the rest is up to them. A total life change which no-one could have predicted but when I look back there were many many signs that were put down to 'other' things. Things dating back to puberty.

I hope you get some answers and relief (((Ang))) and also everyone else who is still on this road.

Oh and I hope (selfishly LOL) it isn't Wilson's Disease because then I would have to curb my chocolate intake. This is serious stuff's about the only vice I have left and I'm fiercely protective of it A gal's gotta have some fun LOL!

love and hugs to everyone! Take care..........
Unread 07-24-2003, 06:47 AM
Hey Lil ((((((((((((((Hugs from up top)))))))))))


Thanks for posting. They've done numerous tests. I have a terrible neuro guy. The didn't follow up on much of what they found and he basically dismissed me as "nervous". Which I'm not. And I was having tremors that day while I was there. Even his nurse commented on how "pronounced" they were. They "lost" most of my test results from a year+ ago. Wanted to do more, then decided not to. Wanted to put me on some plethera of drugs that I refused. My regular doctor there flipped out when he read what they'd done. He said "You NEVER put a person on this kind of medication without some type of testing and NEVER do you put them on more than one type of this medication at ONE time". Good thing they were flushed eh?

Go figure.

I've given up on doctors for now. None of them are concerned unless you're famous, a politition, or have an endless supply of cold hard cash. That I am certain of.

wilson's disease is interesting. Things going on there with me that are too gross to post here.

I have ALOT going on. so much so that I don't even care to share it anymore.

Email me privately, lil, and I'll be glad to talk to you. I need help. That much I know. I've missed "talking" to you twin.

Luv, Anj.

PS Pulled ground water report off epa site and found out our water (regular drinking water) was contaminated with copper several times. This could explain alot.

PSS for ALL> Cardiologist says my ticker is fine except for a VERY minor murmer. No corotid artery problems. Nothing's clogged, so I'm ok there. Cholesteral high, but ratio's are fine.

Saw eye doctor she says,
Unread 07-24-2003, 07:30 AM
MS post hyst?

{{{Lily}}} It's so good to see you! Gidge was asking about you a few weeks ago. I'm sorry you're still doing the doctor-go-round. You are in my thoughts and ers.

{{{Anj}}} You're in my ers also.
Unread 07-24-2003, 07:57 AM
MS post hyst?

Hi Adrite,

I just read through this whole thread, and am going through this whole thing with my DH. He experienced double vision on our vacation, we ended up going through the whole battery of tests, MRI, lumbar puncture, blood tests, and we are waiting for the results. The dr. believes it is early MS, but I'm curious why some don't get the DX until two separate episodes, and some get the DX earlier. Also, this is kind of way out, but my DH drinks Diet coke like water, and I'm wondering if there is any link to MS with something in the environment (as you are concerned about the copper found in your water). Hope you get your answers soon, it is so frustrating. s

Unread 07-24-2003, 09:34 AM
MS post hyst?

just had to pop in on here and send a to Lil.....long time no see sister!!!

sorry to hear you're going through all this , hang in there sweetie and remember we're all still here for ya!

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