How did you find out?

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How did you find out?

Postby unsettled » Sat Feb 12, 2011 11:13 pm

I have a question, I posted it in another area and got 1 response but from someone who is not diagnosed with MS. I had an MRI done now if the MRI had showed anything would the neurologist have called or waited until my appointment to discuss anything. How did you (for those of you who have been dx with MS) find out? .. did the doc call you to come in to discuss finding or was it discussed at a follow up appt? I guess I am feeling a little anxious waiting to hear anything.

Thanks

AQ
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Postby unsettled » Sat Feb 12, 2011 11:29 pm

I'm not sure if this is the area to have posted this question, or maybe it was a dumb question. I guess I am just looking for some reassurance. Hopefully no news is good news. :lol:
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Postby mrbarlow » Sat Feb 12, 2011 11:59 pm

Id like to say good news but I would not assume that.If I was the Neuro I would want to discuss face to face. If an appointment has been made 2 weeks after the MRI for example - discuss the results then.

I was told a few hours after my MRI but I was in hospital anyway being treated for acute opitic neuritis. Also I was in a Saudi Arabia not a state like Britain with 3rd world medical care where initial diagnosis (which would have been precceded by 2 years of your GP implying you are mad), MRI and final diagnosis are 6 months apart. :(
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Postby Karazhan » Sun Feb 13, 2011 2:23 am

Unsettled,
As anxious as you are to get an answer, the sad reality is that if your symptoms are suggesting possible MS, then more likely than not, you won't get a definite answer anytime soon. Not based on the MRI alone, anyway.
I imagine it would be very frustrating to go to your neuro, expecting a yes or no answer but having to leave with more uncertainties than you came in with.
It all happened very quickly for me. I ended up in an emergency room during my first major exacerbation, the MRI w/contrast showed an enhancing lesion as well as older scarring. During my 3 day stay in the hospital, tests were done to rule out other possibilities and I had a lumbar puncture. Three weeks later I was able to get into an MS doc who confirmed the diagnosis. It may sound strange but I consider myself lucky that I didn't have to go through months or years of not knowing.
I wish you the best possible outcome but I know it would be foolish to suggest that you not worry.
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Re: How did you find out?

Postby NHE » Sun Feb 13, 2011 3:24 am

My diagnosis: I developed numbness in my shoulder that went down my arm to my thumb and forefinger. I went to doctors including a neurologist. I was essentially told to take ibuprofen and to try chiropractic and massage therapy. None of that helped. The numbness went away on its own about a month later. Fast forward 8 years of being symptom free. I had numbness and burning sensations in my foot. Went to the doctor. Was told to try chiropractic. It didn't help. After a month I developed optic neuritis on top of the neuropathy in my foot. I had an MRI w/out contrast. They saw something suspicious so they sent me to the hospital. As an inpatient, I had another MRI with contrast, a spinal tap, various genetic and blood tests, and IV steroids. Before I left the hospital 4 days after being admitted, I was told that I most likely had MS. I had a follow up appointment with the neuro, got copies of all of my test results, talked with another neuro, did much research and confirmed that my test results were consistent with the diagnosis, was told by neuro to "pick a drug, any drug," did much more research on the ABC's and picked what I thought was the lessor of the three evils, and here we are today 11.5 years post diagnosis and 20 years after my initial symptoms. Did the "pick a drug, any drug" do any good? After 10 years I really can't say. The rope I've been hanging from kept stretching and getting thinner these past few years so I stopped taking it. However, I can say that it probably did some harm.

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Postby unsettled » Mon Feb 14, 2011 12:08 am

Thank you all for your replies, I do get comfort in knowing others experiences, it makes me feel like I am not alone nor am i crazy. My husband doesn't fully understand and its hard trying to explain to him how I feel at times. My situation has been on going for over a year now. I have been to my GP several times over this year and was told, its stress, anxiety, you just had a baby, its normal, and so on. I was finally referred to a neurologist. I really liked her she listened to all I had to say, that was comforting for a change.

It all started for me over a year ago in January 2010, the left side of my body went numb, to make a long story short, I called 911, they came said it was anxiety, i ended up going to the er with my husband, had a ct scan, all was normal. It still had what they called at the er " decreased sensation". It felt like saran wrap was covering my whole left side including face, scalp, arm and leg, it lasted for a week. These symptoms have been on going since then, and it seem to affect mainly my left side. I have had weakness on this side that comes and goes, its been lingering longer than going lately. A weird patch of skin on my leg that feel like icy hot or something. I only noticed it when something brushed against that area of my leg. I woke up with bad vertigo a few months ago. I had to crawl to the phone, still feeling like I was going to topple over, to call my husband to come home asap. Another trip to the er. They couldn't find a reason for the vertigo. I didn't even initially know that is what it was. It had never happened to me before. It just seems like since i had my second son things with my body have not been right. I don't feel my self. I just want all this to pass. Thanks so much to you who responded and for letting me vent, I know I rambled on. There is much more I could of written but I wont.. haha.

Thanks,

AQ
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Postby SandyK » Thu Feb 17, 2011 9:38 pm

I found out by my neuro trying to eliminate other diseases first. She tested for Lyme, arsenic poisoning, and lots of other diseases I can't spell before we finally did the spinal to confirm what the MRI showed. I was lucky though, I only had 3 months of weeding out other possibilities. Good luck to you.
Diagnosed 1994, Self EDSS is 6.5
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Postby littlered13 » Sat Feb 19, 2011 3:11 am

For me it started right before Christmas 2007. I woke up and my vision was "off" in one eye. I also had pain behind it. I went to an eye doctor and he referred me to a Neurologist.

The Neuro ordered a lumbar puncture and MRI's to rule out a brain tumor. They ended up diagnosing me with a pseudo tumor in Feb of 2008 and told me if I lost weight, my vision problem would go away and would prevent me from going blind. They also put me on water pills.

A couple of weeks after the lumbar puncture, everything from my waist down went numb. When I called the doctor, he told me that it was a side effect from the water pills.

During the time I was on the water pills, I lost about 20 lbs (in conjunction with eating healthy). Unfortunately, the weight loss didn't work and I ended up going completely blind in my right eye (in April of 2008).

I think this is what made him think of MS, so I had to do ANOTHER lumbar puncture, more MRI's, and an EEG.

These tests were done around the middle of May. He told me to come in at the end of June and he would give me my diagnosis.

Unfortuately during that time I had ANOTHER relapse where I was numb from my chest down and had to go a couple of weeks sooner than my appointment. This is when he told me it was MS.

So, it only took 4 relapses and one misdiagnosis in a 6 month period to get diagnosed. I wish it would have been sooner, but I am just grateful it didn't take years.
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