Announcement

Collapse
No announcement yet.

Diagnosed in January

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Diagnosed in January

    Hello all
    I was diagnosed in January after fumbling about for 6 months trying to figure out what was wrong with me. It all started in my ears believe it or not. I suffered from ringing and ear pain and fogginess for months before I had all the tests and a confirmation. I am on Gilenya but not sure if it's working. I've had a little bit of a flare up once a month. The Dr told me to stick it out with Gilenya for at least two months. I'm in my second month. I'm worried because now I have started with leg cramping and little "pin pricks" in my left leg at random times. Is this a sign of decreased mobility to come or is it just par for the course? There were no lesions on my spine. Just wondering - Dartman71

    #2
    How did they diagnose you?

    Originally posted by Dartman71 View Post
    Hello all
    I was diagnosed in January after fumbling about for 6 months trying to figure out what was wrong with me. It all started in my ears believe it or not. I suffered from ringing and ear pain and fogginess for months before I had all the tests and a confirmation. I am on Gilenya but not sure if it's working. I've had a little bit of a flare up once a month. The Dr told me to stick it out with Gilenya for at least two months. I'm in my second month. I'm worried because now I have started with leg cramping and little "pin pricks" in my left leg at random times. Is this a sign of decreased mobility to come or is it just par for the course? There were no lesions on my spine. Just wondering - Dartman71
    Hi! I would like to know what tests did they do to diagnose you. I have identical symptoms to yours. I started with a constant dizziness, brain fog, head pressure, ringing in ears, sometimes ear pain. After VNG I am not directed to neurologist. I had brain MRI on 1.5t and radiologist and doctor says it is clean. No MRI of spine. The neuro screening showed that I have misaligned eyes but other tests were normal. Now I am waiting in blood work and neuro wants to do L.P. can you please share your experience? And tests? I also now have numbness and tingling on left side of my body. Legs and face mostly.

    Comment


      #3
      Originally posted by dizzymg View Post
      Hi! I would like to know what tests did they do to diagnose you. I have identical symptoms to yours. I started with a constant dizziness, brain fog, head pressure, ringing in ears, sometimes ear pain. After VNG I am not directed to neurologist. I had brain MRI on 1.5t and radiologist and doctor says it is clean. No MRI of spine. The neuro screening showed that I have misaligned eyes but other tests were normal. Now I am waiting in blood work and neuro wants to do L.P. can you please share your experience? And tests? I also now have numbness and tingling on left side of my body. Legs and face mostly.
      The first test was an MRI which my ENT suggested. They were looking for an acoustic neuroma. It didn't show up but they find some white matter. My ENT recommended I go to a neurologist so I did and he didn't really say he thought it was MS but he felt I should have a spinal tap. The spinal tap came back with high levels of proteins. That's when MS came into the vocabulary but it wasn't a diagnosis. He ordered another MRI of my brain and one of my upper spine. This time they were actually looking for MS and found a bunch of lesions in the auditory section of my brain. That was when I received my diagnosis. I'm a professional musician so it has created some trouble for me. My blood work showed a lack of Vitamin D and I am now on a regiment of vitamins as well as Gilenya for the MS.
      One thing that kept getting tossed around was Meiniere's Disease which sounds a lot like the symptoms you have.

      Comment


        #4
        Symptoms

        Originally posted by Dartman71 View Post
        The first test was an MRI which my ENT suggested. They were looking for an acoustic neuroma. It didn't show up but they find some white matter. My ENT recommended I go to a neurologist so I did and he didn't really say he thought it was MS but he felt I should have a spinal tap. The spinal tap came back with high levels of proteins. That's when MS came into the vocabulary but it wasn't a diagnosis. He ordered another MRI of my brain and one of my upper spine. This time they were actually looking for MS and found a bunch of lesions in the auditory section of my brain. That was when I received my diagnosis. I'm a professional musician so it has created some trouble for me. My blood work showed a lack of Vitamin D and I am now on a regiment of vitamins as well as Gilenya for the MS.
        One thing that kept getting tossed around was Meiniere's Disease which sounds a lot like the symptoms you have.
        Yes I do have symptoms similar to Meiniere's. But They found downbeat nystagmus on VNG which is usually associated with central problem. And the neuro found eye deviation. I also have very low levels of vitamin D. So there were no other symptoms at all? Did neuro give any explanation on that?

        Comment


          #5
          Hi Dartman:

          Originally posted by Dartman71 View Post
          I am on Gilenya but not sure if it's working.
          What's your definition of "working"?

          Originally posted by Dartman71 View Post
          The Dr told me to stick it out with Gilenya for at least two months. I'm in my second month.
          What's your expectation of Gilenya?

          The disease-modifying drugs for MS don't work like aspirin, where you take a couple of tablets and your headache's gone in 20 minutes. They don't work fast, and they don't get rid of symptoms.

          The MS treatment meds have to be in the body long enough to reach a steady state and influence the immune system. That generally takes 2 to 3 months and sometimes longer. Being only in the second month isn't really enough time to know how well Gilenya is "working."

          Also, the MS treatment meds don't make symptoms get better or go away. If symptoms go away, it's because the body has begun to heal on its own. The treatment meds, including Gilenya, can help that happen by modulating or suppressing the immune system and setting up a favorable environment for that to happen. But they don't heal anything themselves.

          The effectiveness of disease-modifying drugs is primarily judged based on MRI activity and actual flares. Newer criteria for judging effectiveness are progression and brain atrophy. None of the criteria for effectiveness involve how a person feels or thinks they should feel. (The most medically effective drug I was on was the one gave me the most intolerable side effects and I had to stop taking it. My feelings about it had nothing to do with how effective it was.)

          To decide that Gilenya isn't working after a short time because you "think" you should be feeling different may not be realistic. That's definitely something to talk with your neurologist about.

          Originally posted by Dartman71 View Post
          I've had a little bit of a flare up once a month.
          What do you mean by "a little bit"?

          In MS, there can be good days and bad days where symptoms may be more or less noticeable than on other days. Symptoms can go up and down depending on body temperature, hydration levels, hormone levels, energy levels. Those are not "flares." Some people call the times of more noticable symptoms "mini-flares." They're not, and using that terminology in MS can easily take someone down the wrong road.

          In MS, flares (exacerbations, relapses, attacks) are inflammatory events that last days to weeks. If it's not an inflammatory event that lasts days to weeks, it isn't a true flare.

          There's something called a pseudo-flare or pseudo-exacerbation, in which symptoms can increase based on an increase in body temperature that causes damaged nerves to misfire. They're called pseudo or false flares because they aren't real (inflammatory) flares. They can last minutes to hours to days if the circumstances are right (illnesses with even a low fever can cause a pseudo-flare that lasts for a couple of weeks).

          Another thing to know about flares is that the majority of people with untreated MS have 1 or 2 true exacerbations a year, not every month.

          So if you think Gilenya isn't "working" because you're having a "flare" every month, you may be misjudging what's happening and applying an unrealistic standard to Gilenya's effectiveness. Again, it's important to discuss your expectations with your neurologist.

          Changing treatment meds every couple of months only because you think something else should be happening would mean that none of them ever have a chance to work long enough to demonstrate their level of effectiveness. Even Tysabri, the most effective disease-modifying drug for MS in common use is allowed 6 months to determine effectiveness.

          Originally posted by Dartman71 View Post
          I'm worried because now I have started with leg cramping and little "pin pricks" in my left leg at random times. Is this a sign of decreased mobility to come or is it just par for the course?
          First, "pin pricks" is a phenomenon affecting sensory nerves, not motor nerves. Sensory nerves aren't related to mobility and not a sign of anything related to mobility.

          Cramping is a different phenomenon than mobility and can't be used as a predictor of things to come. Some people have spasticity that's severe enough to affect mobility, but most people don't. I have horrific muscle spasms in both legs from time to time, but otherwise I walk just fine after years of having MS. A lot of people who have lost mobility lost it because of lack of nerve impulses to the leg muscles, not because of cramping or spasticity. Again, something to talk to your neurologist about to be sure that your ideas and expectations are realistic.

          Originally posted by Dartman71 View Post
          There were no lesions on my spine.
          First, in MS, there won't be lesions "on your spine." The spine is part of the skeleton and is made of bone. MS isn't a disease of bone.

          MS is a disease affecting the central nervous system. As such it can affect the spinal cord, which is a separate structure than the spine. It might seem like this is nitpicking. But it's really difficult to understand MS and how it works if you're not even talking about the right anatomy.

          It's possible to have a lesion in the spinal cord that's too small to be picked up on an MRI. It's also possible that a lesion affecting the legs isn't in the spinal cord at all, but is instead in the brain, which is the master controller and has a place that maps to every part of the body. So leg cramps and pin prick sensations can originate in the brain without the spinal cord being affected at all and, correspondingly, no cord lesions on an MRI.

          Comment

          Working...
          X