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Old 07-27-2014, 09:04 PM #1
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Arrow MS Forum Introductions

Our other introduction thread was getting too long so I've posted the link to the locked thread and we'll use this new one for our MS Forum Introductions!

http://neurotalk.psychcentral.com/thread150052.html
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Old 07-28-2014, 05:37 AM #2
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Default Hello, new here

Just joined up last week (I think). Have been battling weird symptoms that hang around for 3-8 weeks then leave since January 2013. First episode was trigeminal neuralgia. I am still undiagnosed. Last specialist (neuro opthamologist) shortlisted multiple sclerosis, NMO, infection such as Lyme, and vascular cause for all the weirdness going on. Waiting for a new set of mris, EMG/NCV and someone (my neurologist) to make a decision! Even if that decision is to send me in another direction rather than just more waiting ...

Right now ... dealing with muscle twitching, painful electric zings in both legs, recurring right side weakness, cog issues (worsened by the Lyrica I'm taking for the first two things I'm sure), and escalations of some other stuff if I get fatigued or overheated. It's been a weird ride for the last year and a half ... and if I focus too much on what I was able to do a couple of years ago compared to now ... well . This has been an emotional roller coaster for me, as it is for all of you.

I joined up with neurotalk because all along I've been getting "not likely ms" from various neuros and there are forums here for some of the other things that have come up ... (some of which have fallen off the list at this point).

Hope it's okay that I visit, even if I'm not yet dxed!
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Old 07-28-2014, 12:02 PM #3
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Welcome Cedar, nice to met you. I hope your DX is not MS,
but then, there are worse things! You are welcome here, even
though you are unDX. I hope we can help you through your DX
journey.

Good luck.
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Old 07-28-2014, 06:53 PM #4
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Thank you for the welcome, Sally . And yes, there are worse things for sure ... first neuro thought brain tumour and I was very happy when my mri came back only showing measly little lesions (which everyone dismissed) versus the tumour he was expecting!

And ... your puppy is adorable!!!
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Old 07-29-2014, 08:44 AM #5
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Default New intro

I have just received my MRI report and a clinical correlation for ms is suggested. So I go back on the 5th for my follow up.
So I am not sure what to expect. I have read about a spinal tap - are they able to test for spinal lesions this way or will I need another MRI?
I imagine they will need to rule out some other things like lupus. All of my info is based on the MRI report. I have not had any one explain it to me yet.

in the right and left periatrial areas - faint T2 prolongation along the adjacent deep white matter. Marginal to the splenium of the corpus callosum.

I was going to call in today and see if they can move up the apt a few days. Just because I am impatient.

Only symptoms are double vision with one eye closed (both eyes - right eye worse) head aches with stiff neck and fatigue.

Other than that I am 29 and have two young children. One is starting prek and the other is trying his best to start the terrible twos at 18 months haha.
Married for 10 1/2 years and counting.
I have hashimotos thyroiditis for 4 years also. -- although I was just diagnosed with the antibodies a year ago,.
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Old 07-29-2014, 11:55 AM #6
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Default MS . . . or not

Hi Summer,

Sometimes diagnosis can be so exasperating. The wheels turn so slowly. We understand. Below is some advice I share with anyone going through the diagnosis routines.

Be patient. Begin a wrritten, personal log or diary of your symptoms, your doctors' visits, (with dates, doc's name, address and phone number) all in-office exams, tests and their results and all prescriptions In writing.

Obtain and keep all other test results, blood, urologist's visits and tests, LP's, EVP's, MRI films and the film's written report because you'll need them in the future, no matter what your dx is. I guarantee it. And the physicians must, by law - HIPPA - provide them to you, if you ask. Ask.

Like so many others, I've been through it myself, much of it 20 years ago at my own PPMS diagnosis.

If you have questions, this is a good place for answers, opinions, and recommendations.
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Old 07-29-2014, 01:05 PM #7
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Summer,

We know how exasperating getting a diagnosis can be. I forgot to answer your LP quetion.

No, an LP does not indicate spinal lesions; an LP tests for oligoclonal bands

Here's info from Wikipedia:

"For the analysis of cerebrospinal fluid, a patient has a lumbar puncture performed, which collects some of his or her cerebrospinal fluid.

Each of the two to five oligoclonal bands seen by protein electrophoresis represent proteins (or protein fragments) secreted by plasma cells..."

To look for spinal lesions, yes, MRIs must be done. Depending on your physical symptoms, you may need MRIs from the C-spine (Cervical lesions generally affect the area above your shoulders, your arms, wrists and hands), your T-spine (Thoractic lesions can indicate lesions that affect your chest muscles and abdominal muscles regions)

The L-spine (Lumbar - affects the leg muscles), and the S-spine. (Sacral - bowel, bladder and sexual function) have less common MRIs.

See: http://www.disabled-world.com/artman/publish/spine_picture.shtml
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Old 07-29-2014, 01:15 PM #8
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Quote:
Originally Posted by msbluis View Post
Summer,

We know how exasperating getting a diagnosis can be. I forgot to answer your LP quetion.

No, an LP does not indicate spinal lesions; an LP tests for oligoclonal bands

Here's info from Wikipedia:

"For the analysis of cerebrospinal fluid, a patient has a lumbar puncture performed, which collects some of his or her cerebrospinal fluid.

Each of the two to five oligoclonal bands seen by protein electrophoresis represent proteins (or protein fragments) secreted by plasma cells..."



To look for spinal lesions, yes, MRIs must be done. Depending on your physical symptoms, you may need MRIs from the C-spine (Cervical lesions generally affect the area above your shoulders, your arms, wrists and hands), your T-spine (Thoractic lesions can indicate lesions that affect your chest muscles and abdominal muscles regions)

The L-spine (Lumbar - affects the leg muscles), and the S-spine. (Sacral - bowel, bladder and sexual function) have less common MRIs.

See: http://www.disabled-world.com/artman/publish/spine_picture.shtml


ah ok. Yes that makes sense.

Another question then.


How do you know what to bring up with the dr?
I have some incontinence issues but I also had a 8.9 and 10.7 lb baby. and have some prolapse that contribute to that.
I have a degenerate disk in my s1 vertebrae so I have had nerve pain in my right leg and back pain for years.
Do these need to be brought up?

I have swelling (or what feels like swelling) in my legs and feet and have been told that would be from hashimotos.

I just wrote them down in my journal last night to bring up but I don't want to bring up stuff that might sound like ms and it not be. I feel like I should let my body speak for itself for the new tests.
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Old 08-06-2014, 12:25 PM #9
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Default PPMS here, hello

Hi all,

Diagnosed a year ago and I'm still struggling with the feeling that maybe it's something else.

I have seen all my results, spinal tap: positive for O-bands, mri: lesions from c4-c6, etc but my progression has seemed very slow (thankfully), which makes me wonder.

So I'd love to hear from others who were walking pretty normally when symptoms began, to a point when it was CLEAR that things had changed.

I'm curious as to how it changed. Did the tingling change to numbness and then to weakness? Or were those symptoms seperate? What did it feel like physically?

It's funny, about two months ago I started getting a little more active on line. Really just two forums, but since then I have actually felt quite a change in my legs. Arms as well.

I'll leave it there for now. But ya, holler back.
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Old 08-07-2014, 06:08 AM #10
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Form what I understand it is the process of elimination. If they didn't see anything else like lupus etc... you still have demyelination and that is treated with the same meds if you were MS or not. (not a dr though)
Some people only have one or two relapses their whole life. Maybe you are one of the lucky ones.


I am not yet diagnosed but I have several lesions in my brain and will be going to the ms center of atlanta soon for the LP and other tests. Other than double vision/head aches, I dont have any other clear symptoms yet. That I can't say are thyroid related or that I have to run to the bathroom when I sneeze because I had a 10.7 lb kid lol.

However, I will say trust your gut and ask questions at your next appt or make one so you can talk to them.



Quote:
Originally Posted by biddi4 View Post
Hi all,

Diagnosed a year ago and I'm still struggling with the feeling that maybe it's something else.

I have seen all my results, spinal tap: positive for O-bands, mri: lesions from c4-c6, etc but my progression has seemed very slow (thankfully), which makes me wonder.

So I'd love to hear from others who were walking pretty normally when symptoms began, to a point when it was CLEAR that things had changed.

I'm curious as to how it changed. Did the tingling change to numbness and then to weakness? Or were those symptoms seperate? What did it feel like physically?

It's funny, about two months ago I started getting a little more active on line. Really just two forums, but since then I have actually felt quite a change in my legs. Arms as well.

I'll leave it there for now. But ya, holler back.
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