My first post , tests done. Waiting.

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My first post , tests done. Waiting.

Postby titus110 » Sun May 15, 2016 2:29 pm

My guess is I'm posting the same thing many have before. I've had symptoms for well over a decade.

I was first diagnosed with ocular migraines in 2005. Been to ER twice for weird symptoms. Sent to podiatrist when my foot & leg began failing.

Why has no one ever suggested ms??

My MRI shows one lesion. Right frontal white matter.

Anyone with any thoughts? Does it sound like ms?
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Re: My first post , tests done. Waiting.

Postby jesski » Tue May 17, 2016 6:02 am

What tests are you waiting to hear about?

I'm new too. Have lots of blood work out, and spine MRI Saturday, lumbar puncture Monday.

I feel like I've had "mild" symptoms for years, but things really blew up starting in March. My neurologist has all but said it is MS and has ordered these tests to reach certain diagnosis.

Anyway, as I am new as well, I guess I can't comment much on your symptoms, but just wanted to say I'm waiting too. It is hard.
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Re: My first post , tests done. Waiting.

Postby ElliotB » Tue May 17, 2016 2:49 pm

Could be MS but there are about 400 illnesses that mimic the symptoms of MS - MS is often hard to diagnose. Here is the basic criteria used for a MS diagnosis:

http://www.nationalmssociety.org/Nation ... -of-MS.pdf

Have you seen a neurologist that specializes in MS?
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Re: My first post , tests done. Waiting.

Postby trixie36 » Sat May 21, 2016 3:00 am

I am in a similar situation. I have been having neurological symptoms for man years but over past 3 they have gotten much worse. Then 2 days after my wedding last month I woke up and my eye sight was totally bonkers and my right eye hurt, then a week later the left side of my face went paralyzed and drooped (not Bells Palsy) for 22 hrs. Last month entailed 2 ER visits, 2 opthamologist appts, 1 Neuro-Opthamologist appt & 2 Neurologist appts. Tests that were done were MRI of my brain, and spine with contrast, & a visual field test. My MRI did show some abnormality in 2 areas of my brain white matter. The Neurologist is blaming many of the symptoms on "persisten silent migraine" but admitted it doesn't explain many of my symptoms and said he doesn't know what is wrong. He offered no treatments at all. This is unacceptable to me in that my quality of life at age 36 is awful, I have a hard time walking much or standing in place for more than a couple minutes, vision is now permanently altered, I am so fatigued everyday I can barely do anything and even small amounts of activity wipe me out. I was diagnosed with Fibromyalgia a few years ago but my symptoms go way way beyond what Fibro explains. So I sought out a second opinion from another large hospital in the same city but this one is better and after they reviewed my records they are sending me to see a specialist at their MS Clinic. So perhaps they are connecting dots the other Neurologist was unable to. You often hear stories of it taking years and multiple doctors for someone to finally get diagnosed with MS or one of the other dx that have the same symptoms. Or for 2 doctors to have conflicting opinions about whether someone had MS or not. I really hope the MS Clinic I see in a few weeks can help me. Have you seen a Neurologist yet? It is true that migraines can cause quite severe neurological symptoms and while uncommon they can cause episodes of symptoms that last weeks to months straight. I can see how some with MS are misdiagnosed with migraine first. Also many with MS also have migraines and one symptoms of MS can be a sudden change and/or worsening of migraine symptoms.
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Re: My first post , tests done. Waiting.

Postby lyndacarol » Sat May 21, 2016 8:17 am

trixie36 wrote:I am in a similar situation. I have been having neurological symptoms for man years but over past 3 they have gotten much worse. Then 2 days after my wedding last month I woke up and my eye sight was totally bonkers and my right eye hurt, then a week later the left side of my face went paralyzed and drooped (not Bells Palsy) for 22 hrs. Last month entailed 2 ER visits, 2 opthamologist appts, 1 Neuro-Opthamologist appt & 2 Neurologist appts. Tests that were done were MRI of my brain, and spine with contrast, & a visual field test. My MRI did show some abnormality in 2 areas of my brain white matter. The Neurologist is blaming many of the symptoms on "persisten silent migraine" but admitted it doesn't explain many of my symptoms and said he doesn't know what is wrong. He offered no treatments at all. This is unacceptable to me in that my quality of life at age 36 is awful, I have a hard time walking much or standing in place for more than a couple minutes, vision is now permanently altered, I am so fatigued everyday I can barely do anything and even small amounts of activity wipe me out. I was diagnosed with Fibromyalgia a few years ago but my symptoms go way way beyond what Fibro explains. So I sought out a second opinion from another large hospital in the same city but this one is better and after they reviewed my records they are sending me to see a specialist at their MS Clinic. So perhaps they are connecting dots the other Neurologist was unable to. You often hear stories of it taking years and multiple doctors for someone to finally get diagnosed with MS or one of the other dx that have the same symptoms. Or for 2 doctors to have conflicting opinions about whether someone had MS or not. I really hope the MS Clinic I see in a few weeks can help me. Have you seen a Neurologist yet? It is true that migraines can cause quite severe neurological symptoms and while uncommon they can cause episodes of symptoms that last weeks to months straight. I can see how some with MS are misdiagnosed with migraine first. Also many with MS also have migraines and one symptoms of MS can be a sudden change and/or worsening of migraine symptoms.
Have you requested a vitamin D test (the "25-hydroxy D" test)? If so, what were the actual test number results?

Misdiagnosed Vitamin D Deficiency with James E. Dowd, MD (9 min.):
https://www.youtube.com/watch?v=aeLz5cBKJ3I

Interviewer: Because of what you said where a lot of doctors still aren't seeing this as a need to get tested for, vitamin D deficiency is probably still misdiagnosed as a number of other things… Is that correct?
Dowd: Yes, it probably is overlooked in a number of different diseases.

@0:55 Another example of a disorder that is sometimes misdiagnosed and is vitamin D deficient is fibromyalgia, which is one of these chronic pain disorders….
@1:25 I'm not saying that everybody with fibromyalgia has vitamin D deficiency, but probably 70% do because 70% of the population is deficient
@1:43 There are occasional patients with fibromyalgia where that is the primary driver of their pain and fatigue and misery; and when you correct that they get dramatically better.…
Interviewer: Could a person be deficient and not really know it? And is there any harm in that?
Dowd: In fact, most patients who have vitamin D deficiency don't know it - either don't know it because they don't know what symptoms are associated with deficiency, or they don't know it because they just feel fine and they've never measured… Symptoms unfortunately are often a fairly late sign in any disease process or deficiency or imbalance. Just because you don't have any symptoms doesn't mean that you're not at risk.

Neurological symptoms are common with vitamin D deficiency. Vitamin D3 helps control relaxation of skeletal and involuntary muscles. D deficiency results in cramping and constriction of blood vessels, which increases blood pressure and thus, can increase the likelihood of migraines and headaches.
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