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  • Help - can't get diagnosis - I'm lost!

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    Old 03-26-2008, 04:05 PM   #1
    johndo555
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    Help - can't get diagnosis - I'm lost!

    Hi all,

    I need all the advice I can get.

    Since about three months I have been having these symptoms:
    * tingling in left hand, both hands, right foot, or burning sensations when I bend the neck (l'hermitte ?)
    * tingling and buzzing sensations all over the body (underfoot, in fingers, chest, etc)
    * tightness around the angles that comes and goes
    * sharp pains in muscles
    * jumping nerves on face and sometimes elsewhere
    * symptoms aggravated when taking hot showers (especially the tingling and numbness)
    * pain and flashes of light in the left eye in more than one occasion that left me with lots of floaters
    * weird sensations on the legs (creeping)

    I have had a brain and spine MRI which came back negatvie...
    except for small foci of hypoersensitivity in the frontal region and the cerebral hemispheres - and a "very mild left foraminal stenosis" that doesn't bend the spinal cord

    My blood work (B12, etc) doesn't show anything particular except a TSH of 5.7 but normal Free-T3 and Free-T4.

    The neuro can't tell me what is wrong (initially thought MS but now says no since MRI is negative according to neurologist).

    My GP thinks MS but is not a specialist...

    Should I seek another opinion or what?
    Has anybody out there have gone through a similar situation (negative MRI but ultimately diagnosed)?
    Can small foci of hypoersensitivity be small MS plaques?

    Thanks a lot I don't know what to do next...

    John

     
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    Old 03-26-2008, 04:24 PM   #2
    MSJayhawk
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    Re: Help - can't get diagnosis - I'm lost!

    I would check for another opinion. You should also have tests for Lyme disease and for other possible causes. It may be too early for the MRI to discern all the problems and causes.

    Your GP might be able to get you a referral to another neurologist. As you are up north, you can cross the border to visit the Mayo Clinic or a teaching hospital, if you can not get the attention you require.

     
    Old 03-26-2008, 04:29 PM   #3
    april1848
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    Re: Help - can't get diagnosis - I'm lost!

    Hi, johndo.

    Your symptoms sound like mine when I was diagnosed, but of course that doesn't mean it's MS. I can't comment on your MRI, but there are people who have been diagnosed with MS with negative MRIs. You should ask for a referral to an MS specialist. The other two tests that can help diagnose, besides MRI, are lumbar punctures and evoked potentials. I have neither had either, but lots of people here have, and I'm sure you'll get a lot of comments. You'll also have to get everything else ruled out. Lupus and lyme disease can look like MS, and I believe they can be ruled out with blood tests.

    There are also lots of people here who are still trying to get a diagnosis, even though they're pretty sure what's wrong. I was lucky in that it took 4-5 months for me. I thought that was a long time before I started reading here.

    Please be patient (easier said than done) and be proactive in finding out what's wrong. Many of us, during the diagnostic process, were filled with doubt, and some of us felt or were told by others that our symptoms were in our heads. Don't doubt yourself and get to the MS specialist as soon as you can. Feel free to vent here, and welcome!
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    Avonex started 11/07,
    Stopped 4/10 due to no insurance.

     
    Old 03-26-2008, 06:46 PM   #4
    johndo555
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    Re: Help - can't get diagnosis - I'm lost!

    Hi april1848,

    Did you get those nerve jumpings at one point in your disease?
    I get this with the tingling and numbness.
    My Lhermitte also seems to send electrical current in different places
    depending on the day...

    Has anybody ever received a negative MRI and a positive spinal tap?
    Also, is a spinal tap always painful?

    Thanks

     
    Old 03-26-2008, 06:56 PM   #5
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    Re: Help - can't get diagnosis - I'm lost!

    The Lhermitte was my very first symptom. It started all of a sudden in April of 2007. The nerve jumping--I know exactly what you mean by that, started a month later. Then a bunch of other symptoms started.

    I didn't see a doctor until July, and I got diagnosed in September. I really, really thought it was a pinched nerve.

    There are definitely people on this site who had negative MRIs and positive spinals, hopefully they'll jump in soon. I never had a spinal, but they seem to bother everyone differently, on this board at least. From what I've read, it's best to drink TONS of caffeine the day before and the day of the procedure. You are also advised to lay down after the procedure--can't remember for how long, but this seems to be incredibly important to avoid the "spinal headache". I also read here that if you do get the headache, which is supposedly really terrible, that you can go to the doctor and request a blood patch. I'm not sure what that is, but people say it works wonders.

    People have also said that they experience pain in the lumbar region afterwards--makes sense to me, that needle is long.

    My initial symptoms--the Lhermitte's and most of the pins and needles, went away after I did the IV solumedrol, which are steroids. They come back occasionally, but never for longer than a day or two.

    I hope someone who's had an lp and negative MRIs pipes in soon! I hope this helped.
    __________________
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    dx 9/07
    Avonex started 11/07,
    Stopped 4/10 due to no insurance.

     
    Old 03-26-2008, 07:00 PM   #6
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    Re: Help - can't get diagnosis - I'm lost!

    I had a bunch of weird neurological stuff happening, some of which I assumed was migraine. When I got L'Hermittes symptoms this past fall, that's when I began really considering MS as the cause of everything else going on.

     
    Old 03-26-2008, 07:33 PM   #7
    johndo555
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    Re: Help - can't get diagnosis - I'm lost!

    april1848,

    Yes your post definitely does help.
    Just to talk to someone with similar symptoms reminds me that I am not just going crazy with this.
    My neuro, who is not an MS specialist, thinks that a negative MRI rules out MS.
    But my GP thinks MS but is not a specialist either.
    I've been trying to get an appointment but can only get one for this July.
    If I want sooner then I won't get a neuro that specialises in MS.
    But the Lhermitte is definitely what makes me think of MS.
    At first I thought also of a pinched nerve, because my lhermitte only tingled my left hand, but now I have it as a burning sensation in the arm and tingling in the left hand and foot: if its a pinch nerve there must be a lot of pinched nerves!

    Also I noticed that everything is worst+++ after I take a hot shower...

    My neuro also seems to think that the nerve jumping maybe BFS.
    I think it might be related to the other neurological symptoms I have been having.
    Glad to hear (in a sense) you've had that too. Did you have it all over
    the place or in specific body parts?

    Thanks!!

    John

     
    Old 03-26-2008, 07:43 PM   #8
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    Re: Help - can't get diagnosis - I'm lost!

    Nenu,

    Have you received a diagnosis yet?

    John

     
    Old 03-26-2008, 08:16 PM   #9
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    Re: Help - can't get diagnosis - I'm lost!

    Quote:
    Originally Posted by johndo555 View Post
    Nenu,

    Have you received a diagnosis yet?

    John
    Yes, March 5th. Was diagnosed with MS.

     
    Old 03-26-2008, 08:22 PM   #10
    johndo555
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    Re: Help - can't get diagnosis - I'm lost!

    Nenu,

    Sorry for your diagnosis.
    In my case I don't know how to feel.
    Some days I would prefer receiving the diagnosis than staying in the dark with my symptoms...
    How did you experience your lhermitte?

    Thanks

    John

     
    Old 03-27-2008, 05:25 AM   #11
    Nenu
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    Re: Help - can't get diagnosis - I'm lost!

    Quote:
    Originally Posted by johndo555 View Post
    Nenu,

    Sorry for your diagnosis.
    In my case I don't know how to feel.
    Some days I would prefer receiving the diagnosis than staying in the dark with my symptoms...
    How did you experience your lhermitte?

    Thanks

    John
    I was doing my regular thing. Sitting at my computer talking to my friends over voice chat (wonderful tool!) and I bent my head down, and my hands went numb. Also, my lower back felt like electrical sensations were going through it. It lasted maybe a few seconds.

    I got freaked out! So I didn't bend my head again right away, but curiosity got the best of me, and I tried bending the head again, and it did it again. When I described this to my neuro, I said, "It feels like someone's strumming a guitar string on my back". He thought this was a genius explanation, so much that he actually wrote this in his notebook lol. The L'Hermittes lasted a few days and was gone, but since then there's been times when it's returned, most recently I got into the bath and felt it again, but now that I'm aware of it and know what it is, I didn't panic about it, and it was only there for the evening, gone the following day.

    My diagnosis was a blessing in all honesty. Some you talk to may agree. I went through medical distress trying to figure out what was wrong with me, in pain and agony from the symptoms for a long time. Hearing "You have Multiple Sclerosis" was when all my stress exited the door. They had identified my condition finally. No more drugs that I didn't need to be taking that were making me sicker, no more insomnia from worrying "What do I have? Am I ever going to get better?". Now I'm empowered to fight this with the right support.

     
    Old 03-27-2008, 11:34 AM   #12
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    Re: Help - can't get diagnosis - I'm lost!

    I had all sorts of goofy symptoms. Itching, numbness...one of the worst happened in the shower. You know the feeling of the water hitting your back? Well when I got out of the shower, I would keep feeling that all day. Then it turned into a feeling of a million needles being stuck. The worst pins and needles were on my arms, back, and torso.

    I was also relieved when I got my dx. The whole process felt so long, although it really wasn't, and I just felt terrible for a few months. My primary care doc diagnosed me, and he is wonderful. When I got a call after my MRI to come in first thing Monday morning, I just knew. I was waiting in his office, feeling really sad for him. It must be hard to tell someone they have MS! So when he came in, all solemn, I said "I have MS, don't I?" and put him out of his misery. He laughed and cried with me. The whole thing didn't hit me right away, but the relief was immense!
    __________________
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    dx 9/07
    Avonex started 11/07,
    Stopped 4/10 due to no insurance.

     
    Old 03-27-2008, 01:15 PM   #13
    Nenu
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    Re: Help - can't get diagnosis - I'm lost!

    Quote:
    Originally Posted by april1848 View Post
    I was also relieved when I got my dx. The whole process felt so long, although it really wasn't, and I just felt terrible for a few months. My primary care doc diagnosed me, and he is wonderful. When I got a call after my MRI to come in first thing Monday morning, I just knew. I was waiting in his office, feeling really sad for him. It must be hard to tell someone they have MS! So when he came in, all solemn, I said "I have MS, don't I?" and put him out of his misery. He laughed and cried with me. The whole thing didn't hit me right away, but the relief was immense!
    Definitely! When I was told there were no tears, because like you I already knew and had prepared myself for a long time, but I gave my neuro the biggest hug ever and thanked him. Going to mail him a thank you card today as a matter of fact, he's been amazing!

     
    Old 03-27-2008, 03:40 PM   #14
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    Re: Help - can't get diagnosis - I'm lost!

    I sent my doctor and his secretary a thank you note too. His secretary was SO great. My doctor had ordered a million tests, and after each one I called constantly to see if they had results yet. His secretary never got impatient me. And after an X Ray of my spine, when they didn't get the results promptly, his secretary drove to the hospital herself and picked them up! She was also very understanding when I was so upset that the X Ray was normal.

    When I first met his secretary, she told me we had gone to high school together, she was a year younger than me. She said that one day some girls were teasing her in the cafeteria, and I went over and stuck up for her. She thanked me when we met at the doctor's office. I don't remember this, but this was probably one reason why she was so nice. I learned from other patients in the waiting room how good she was to them too. She's really an angel, and I am so thankful that she didn't show any annoyance towards me! I can't imagine how much harder the process would have been if she wouldn't have been so kind.
    __________________
    April
    dx 9/07
    Avonex started 11/07,
    Stopped 4/10 due to no insurance.

     
    Old 03-27-2008, 04:16 PM   #15
    Nenu
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    Re: Help - can't get diagnosis - I'm lost!

    Quote:
    Originally Posted by april1848 View Post
    I sent my doctor and his secretary a thank you note too. His secretary was SO great. My doctor had ordered a million tests, and after each one I called constantly to see if they had results yet. His secretary never got impatient me. And after an X Ray of my spine, when they didn't get the results promptly, his secretary drove to the hospital herself and picked them up! She was also very understanding when I was so upset that the X Ray was normal.

    When I first met his secretary, she told me we had gone to high school together, she was a year younger than me. She said that one day some girls were teasing her in the cafeteria, and I went over and stuck up for her. She thanked me when we met at the doctor's office. I don't remember this, but this was probably one reason why she was so nice. I learned from other patients in the waiting room how good she was to them too. She's really an angel, and I am so thankful that she didn't show any annoyance towards me! I can't imagine how much harder the process would have been if she wouldn't have been so kind.
    What a cool story and coincidence! That's awesome! My ENT's secretary (my ENT is the guy who got the ball rolling to my diagnosis) is the same. I call her and we talk for what seems like hours. Great woman.

     
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