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So many symptoms, but no diagnosis

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Old 05-05-2009, 08:41 AM   #1
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toy23 HB User
So many symptoms, but no diagnosis

My problems began in January of 2007, I had vertigo so bad that I could not move. I went to the ER were a CT scan was done they said it was normal and that I probably had a viral infection. This lasted about a week. Then things seemed to go back to normal for a while.

In the past two years I have had brief periods of episodes that I was able to deal with on my own. I convinced myself that there was nothing wrong with me. I always had an explaination for my episodes. I slept wrong, that's why my hands and feet went numb, or I have a pinched nerve, that would explain the pins and needles. When I would lose my balance or trip and fall I thought I was just being a klutz etc. I never gave ms a thought.

Reality hit me in the face this past February. On the 6th of February, when I was at work I had a pain that hit behind my left eye that felt like I was stabbed. It only lasted a few seconds but it was immediately followed by symptoms of a stroke. I was rushed to the hospital were they did a CT scan and ruled out a stroke and diagnosed me with an opthalmic migraine and sent me home. All weekend my whole left side was weak and numb, my balance was off and I was exhausted. On Monday, I was awakened by the worst headache I have ever had. I could not lift my head without crying out in pain.
Back to the ER>diagnosed complex migraine. Next day, the same thing happened but they did an MRI said it was normal, gave me IV pain meds and a corticosteriod and told me to see a neurologist in 2-3 due the the severity of the migraines. After being given the medications I developed tremors in my head and trunk region. I still have them now but they are not as severe.

I went to the neuro on February 13th. He did an exam and told me that he looked at my MRI and didn't see anything other than a very small arachnoid cyst and he stated that given all the symptoms I have MS is a possibility but since I have no lesions on my brain he did not feel the need to order any additional testing. He gave me a sleeping pill, and told me the tremors were due to the steriod and to call him on Tuesday if I was still having them.
By the time Tuesday came I was worse so I called him and he said give it a week because the steroids could still be in my system. I waited 2 weeks and called him back, when I saw him again he put his hands in there air and said "I don't know what it is, but take this medicine and it should go away"
He gave me klonopin and it did not work. Finally on March 5th, I had enough, when I woke up that morning my vision in my right eye was gray and fuzzy, I went back to bed and when I woke up I could see but everything was blurry. I told my husband to take my to a different hospital and if they wouldn't due anything for me I was going to commit myself I couldn't take it anymore. I was admitted by the ER immediately. He walked in, took one look at me and said "this is neurological, and you are being admitted now" , the neurologist that saw me in there told me that I need to go to a movement disorder clinic and she couldn't do anything for me. After being pumped full of Ativan for 5 days they sent me home, and told me to follow up with my GP.

I went to my GP on March 27. She did a physical on me and actually listened to everything that I had to say, she told me that based on all the info that I had given her, the first thing that came to her mind was MS, but she wanted to do some bloodwork to check my thyroid and she wanted to get all my charts from the neuro, and the hospital. She also told me to keep my appointment with the movement disorder clinic so that we can get the tremors under control. All of my bloodwork came back ok, so now we are just waiting until my appointment next week and see where to go from there. She was furious at the way the neuro treated me and told me that I will not be going back to see him again, and that I was not the first person that told her negative things about this Dr.

So for now, I am stuck in limboland, and hopefully within the next couple of weeks I will be in a better place than I am now.

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Old 05-05-2009, 10:27 AM   #2
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popstarrdiva HB User
Re: So many symptoms, but no diagnosis

Geez! Hang in there. I know the feeling of starting to think you are losing it and no one listens to you! I am at 12 yrs with random, weird symptoms that let me know that something is definitely wrong. I am now not taking "you are fine" as an answer until they can explain to me the cause of all my weird symptoms! They don't care because ultimately it does not affect them and so you need to push for yourself without looking like someone who wants to find something wrong etc etc.
Best of luck!

Old 05-05-2009, 10:44 AM   #3
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Re: So many symptoms, but no diagnosis

Crazy, but not unusual story. Im very sorry you are going thru all this. Your husband is a saint to hang in there with you and help you get the help you need. Your GP sounds like a good one- keep that one around.
More and more scare stories appear on here about Neuros who dont follow protocol or help patients...especially in ER situations. Please contact your local MS society or ask here for a referral for a good MS specialist...have all your records sent to an MS Specialist along with having your GP getting you an appointment and start there. A good MS specialist can not only diagos, but rule out MS..
Good luck to you...keep us posted.
RRMS- dx 05

Old 05-05-2009, 12:03 PM   #4
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Re: So many symptoms, but no diagnosis

Limboland bites. I think most MSers have been through similar misery. A good MS specialist is well worth seeing. There are some terrific doctors out there, but in the case of neurological concerns, ask for a referral.

I will keep you in my prayers. You are not alone and you seem to have close support. Stay positive!
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

Old 05-07-2009, 07:25 PM   #5
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apeter HB User
Re: So many symptoms, but no diagnosis

toy23: I can't even tell you how much reading your post meant to me. Grabbing my best friend and telling them I am going to commit myself because I can't take it anymore happened for me last tuesday after weeks of UNBEARABLE headache. I hate that you're dealing with something similar, but I am relieved I'm not the only one who feels like they are going crazy.

I am also in a diagnostic limbo land. Twice in the past 3 years I have had symptoms that have gotten me straight to the neurologist's office with a "that sounds a lot like MS, lets get you an MRI" to a diagnosis of "well your MRI was clear and as long as you're not experiencing symptoms anymore we don't know what that was."

I guess I am just wondering, is this typical for people at the beginning of their diagnosis? A big part of me gives a big sigh of relief at the clean MRI, but then the other part of me just wants to yell "what's going on!! I'm not crazy here!!"

Could it still be MS with a clean MRI? How do I deal with the weeks of my life I have lost twice now to double vision, fatigue, unbearable headaches, bathroom accidents, and numbness and tingling in my legs and hands? "Sorry, professors, I swear I was sick, but they couldn't find anything wrong, please let me make up that project."

Old 05-08-2009, 06:02 AM   #6
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Re: So many symptoms, but no diagnosis

There is not one single test to diagnose MS. A MS diagnosis is about ruling out other things that mimic MS, medical history, clinical observation and test results. Diagnosing MS means it is more likely than not - MS is still a clinical diagnosis.

The MRI is just one of those tests. A clear MRI does not rule out MS nor does a positive MRI give a definite diagnosis, there are other conditions/disorders that can cause lesions.

The neuro needs to look at the whole picture when diagnosing MS or excluding MS.

Some will get a relatively quick diagnosis, for others it can take longer and some get a completely different diagnosis than MS.

In my case: I went to my PCP who told me he couldn't help me, would not give any indication what was wrong and handed me a referral to a neurologist. From my PCP appointment, to the neurologist, to diagnosis it took 3 months.

My MRI was clear. I was diagnosed based on a positive LP, clinical observation and symptoms - I had a clinical diagnosis of MS. Any other test I had was either negative or inconclusive.

Even though I had a definite diagnosis I met criteria to almost the day with my second exacerbation one year later. I have no idea when lesions showed up since we never did another MRI until 2005, I was diagnosed in 1986.

Good luck to both of you in getting answers to your health concerns.
Dx RRMS 1985
5/9/13/ Secondary Progressive without Progression

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