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Old 06-15-2021, 11:24 AM #1
Tinadyke Tinadyke is offline
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Hi, just looking for some advice about what to do next. My best friend has ms and she keeps telling me it sounds like I have it but I'm getting no where with my neurologist. Currently I have muscle twitching all over my body, Numbness in my feet, back, legs, fingers and saddle area. I've had drop foot, which has resolved besides the numbness. Forget words and have trouble explaining things. Sometimes my legs just give out. My balance is terrible. Muscle fatigue. Lhermitte's sign for the past 6 months. Muscle problems with my eyes including double vision at times. I've had a clear mri on my cervical spine and thoracic spine,Clear ct scan on brain, and lots if blood work. B12 fine. I've also had nerve conduction study done with came out fine. He's going to redo the nerve conduction study within the next few weeks. I also have pain in the center of my back at times that wrap around to the front. Any advice would be appreciated. Thank you
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Old 06-15-2021, 01:11 PM #2
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Welcome Tinadyke. Someone will be along.
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Old 06-15-2021, 04:52 PM #3
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OP: I travelled with my sister who was somewhat dx'd with MS in her early 20's, nothing was definite with her but one doc said possible MS. She went on for many years doing her stressful job and the MS came on with a vengence yrs later.

The only things I can mention to you and we tried to get to her was majorally control sugars/carbs, she did not do that. She loved her sugars and I was not her doctor but I have a good feeling docs didn't talk nutrition and cutting out sugars. I even brought out to CA to talk to a nutritionist who also had MS but I don't think the visit did a lot of good. Addiction is horrid.

She was given so many drugs from transfusions, infusions, orals -- you name it she was always telling me about new drugs--- too too many I believed.

And her job was Very Stressful, poor sleep and I know that played a Huge Factor.

Vit D is critical and many supplements are vital too. I would consider Grape Seed Extract and you can do a search of it and MS.

She died too young and I really blame all the doctors and the lack of info on nutrition.

This is my advice on what I eperienced with my sister, and I'm sure others here struggling with MS will come in.
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Old 06-15-2021, 08:17 PM #4
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There are useful sticky thread at top of the MS forum page that have loads of info..
You can also use our search tool - link is in my siggy area below -to find past posts with information..
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Old 06-16-2021, 11:08 AM #5
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Hi Tinadyke,

I've had MS for over 40 years and have been following posts on MS message boards for 20 years. I hope you won't turn out to have MS but I am surprised that you mention a CT scan of the brain and not a brain MRI.

A CT scan can reveal many things but it is a brain MRI that is usually done, along with the 2 spinal MRI's you mention having. I hope you will ask your neurologist about this.

You might want to find a neurologist who is also an MS specialist.

If you have MS, the doctor will probably recommend that you start on one of the disease-modifying drugs (known as DMDs or DMT for disease-modifying therapy) as soon as possible. There are over a dozen of them now.

There have been many studies of diet and MS, but so far no diet has been shown to have an effect on MS although making sure that you're getting the nutrients your body needs, in the right proportions, is always important for general health. You want to stay as healthy as possible if you have MS because infections can cause flareups.

People nowadays have a nearly-normal life expectancy with MS, partly thanks to the generally better care for infections and other complications and partly due to the use of the disease-modifying drugs. Their effect is modest but it is real.

I hope you'll get some satisfactory answers soon!
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Old 06-16-2021, 11:17 AM #6
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Thank you all for your replies. Yes I was wondering about the ct scan myself. From everything I've read they only use mri's of the brain. I will mention this when I go back. I also just came from my optometrist ( he use to be a family doctor)on a follow up from having weak eye muscles, and he told me that sometimes you can have an mri and nothing will show up and do it again in 6 months and there are lesions. He said if I'm having lhermitte's sign there is definitely something causing it. Unlike my neuro who said it just happens to some people for no reason. Think I may just get a new neurologist because I can tell he's soon going to give up on me.
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Old 06-17-2021, 10:33 AM #7
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Your optometrist is right about MRIs but the brain MRI is the standard test for diagnosing MS, though it is sometimes hard to diagnose and people wait years before they're diagnosed.

Optometrists are fine for glasses prescriptions but they aren't qualified to diagnose and treat eye disorders. I hope you can see an ophthalmologist, who might want to do a visual fields test as well as a couple of other tests to get at the reasons for your double vision.
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Repeal the law of gravity!

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Old 06-17-2021, 11:46 AM #8
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Sorry I meant to say ophthalmologist. He just looked in the back of my for optic neuritis, which was fine. He said he's going to leave it for the neurologist to figure out why I'm having trouble with my muscles and nerves. One of these years I will have it figured out haha.
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Old 06-26-2021, 11:30 AM #9
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Every time I've had an optic neuritis issue, a visual fields test has been done in addition to the eye exam.

You watch a dot of light that moves around on the screen and you signal when you're seeing the dot. Then your visual fields are plotted on a chart. They look for "holes" or "blind spots" in your visual field, and these can show up in either central or peripheral vision, or both.

Another test that can reveal optic neuritis is the visual evoked potentials test. You stare at a checkerboard pattern for a while. This test is usually ordered and done by a neurologist, not an ophthalmologist.

If the doctor looks into your eyes, the optic nerve can be visible, and some abnormalities in it can indicate optic neuritis but I'm fairly sure that these other tests are done to establish that diagnosis.

Your ophthalmologist was willing to put your case in the hands of the neurologist, who might want to order these tests.

If you aren't having eye symptoms, there may be no reason to do further tests.
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Repeal the law of gravity!

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Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: glatiramer acetate (generic Copaxone), 40mg 3 times/week, since 12/16/20
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Old 07-21-2021, 11:28 AM #10
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I subscribe totally the words by @agate, I think you need a brain MRI looking for demyelinating lesions, but, even if lesions are found, the next step would be doing a lumbar puncture (spinal tap) to dismiss other diseases.

MS can have a lot of different symptoms, but a lot of diseases can have symtomps that resemble MS.
I was dx with MS last year, and have been on Tecfidera 1 year so far, no new lesions and no activity on the last MRI, so I'm doing good.

Good luck with your dx, we're here to help!
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