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  • Please don't let it be a brain tumor

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    Old 05-18-2008, 10:06 AM   #1
    Cristi601
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    Please don't let it be a brain tumor

    I have been to the doctor's office more times in the last 2 months than I have in the last five years. But what I am discovering is I should have spent a lot more time at the doctor's office over the past few years complaining about all my weird symptoms - my quirks.

    I don't actually have an MS diagnosis at this point. How weird is it that I am hoping for one? I do know one thing - I have some sort of central vestibular disorder. The choices for what that could be are relatively few - brain tumor, migraines, MS, I had a stroke and didn't kniow, and a few rather horrible sounding vascular malformations. According to my GP, an ENT and a cardiologist, I am not sick enough for a brain tumor. Easy for them to say. My ENT was the first to say MS though I suspected it a couple months ago.

    So I see the neurologist tomorrow. It'll be my first visit. If she doesn't order an MRI, my GP wants one right away. The central vestibular poroblem was diagnosed because of something that happened during a vision test that was part of a Meniere's work-up. I do not have Meniere's but I do have double vision (diplopia) and jerky eye movements (nystagmus??). I read somewhere that in young people - I am 37 - that is almost always MS.

    I am absolutely terrified that I have a brain tumor. So much so that I - at least initially - would be relieved weith an MS diagnosis. I am sure that's my naivety talking, but I would be oddly comfortable knowing there is one thing that ties all my little health oddities together.

    Right now my problems are constant dizziness with occassions of really bad vertigo, ringing in my ears, tremors with fine motor skills (typing is tough), leg tremors, shooting pain in my left arm and leg, tingling in my left foot, night sweats, and RLS. Geez I sound like a train wreck. The worst has to be the anxiety attacks. i have NEVER had anything like that and am not coping well. I've always had my proverbial sh*t together and I cannot believe this is where I am now. I am so confused I can't seem to distinguish symptoms from the anxiety attacks. Guess I'll let the neuro sort that out. In the past (years) I have always had tremors in my hands, periods where I do not sleep well at all, weird pain in my left eye, numbness in my left hand. Oh - and I lost my ability to open a jar two years ago. Very weird - thought it was a bit of arthritis. But this latest rash of crap has been truly unique.

    So just tell me this - even if you are lying to me or you don't know - tell me it's not a brian tumor. I don't really have any headaches or nausea (even with the vertigo), no vomitting, no seizures, etc. So maybe I'll get super lucky and it will be one of those kinds of migraines that manifests as vertigo and the rest in anxiety. Right?

     
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    Old 05-18-2008, 01:06 PM   #2
    MSJayhawk
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    Re: Please don't let it be a brain tumor

    No one can give you a diagnosis without testing. A MRI will give you an answer over the questioning of a brain tumor. The "limbo" you are now enduring is what many-if not all- have had to endure. I hope you have a minor obstacle that can be cured with medicine. If you do have MS, you are among friends with whom you may seek words of advice or with whom you may vent.

    RLS can be traced to a circulatory problem. My mom has RLS and Parkinson's. She is taking European Horse Chestnut for the RLS. Since taking it, she has had a much easier time. The doctor will have to run blood work on her after a month because it will thin the blood. If her blood work is good, she will continue to take it.

    I see that you are in KCMO. I attend the MS Clinic at KU Medical in the Landon Building. They have some well experienced MS doctors and my current neuro is a fine woman. I hope you have a good neuro.

    Last edited by MSJayhawk; 05-18-2008 at 01:08 PM. Reason: add

     
    Old 05-18-2008, 02:51 PM   #3
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    Re: Please don't let it be a brain tumor

    The diagnosis of MS is a long, scary process, full of what ifs, and by the time the label is finally applied it can seem anticlimactic ...

    There are so many worse things than this diagnosis, and neurologists seem committed to ruling every one of them out, frightening all of us, individually, in the process.

    I'm told it has to be this way.

    Please know that you are not alone, that you have many kindred spirits here, that most of us have experienced what you are currently going through.

    Someone on the board at one time shared a quote: Sorry looks back, Worry looks around, but Faith looks ahead.

    Have faith. Have patience. You have prayers from so many of us.

     
    Old 05-18-2008, 06:35 PM   #4
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    Re: Please don't let it be a brain tumor

    OMG Cristi, if I didn't know any better, I'd swear I typed your entry.

    I too have vertigo which led to testing for Meunier's. At that time, five years ago, I had an MRI which did not indicate MS. Fortunately for me, my MS was diagnosed in less than a week after my major symptoms occurred- severe leg weakness.

    Like you, my mind automatically went to the worst case scenario. Co-workers were tell me it was a pinched nerve or a sciatic nerve issue. I said NOPE it's MS. If I were to look back over the five years, nothing stood out screaming MS but adding it all up, it's MS.

    The only time I have nauseau is with the vertigo. In the past I've gone to the ER for a nice shot of atavan. I mentioned this to my neurologist who wrote me a script for atavan- lorazepan (generic). This saves major er $$$.

    The first month I had SO many panic/anxiety attacks. Swear to God I didn't know if I should go into my office in case something happened to me people would be around or go to the ER. I was on Paxil for three weeks but it gave me horrible headaches, then a script for Celexa also didn't work. I ended up going to a really good therapist for "behavior management". I highly recommend seeing someone for this. In my thinking if my mind can escalate the problem, my mind should be able to make it better. I bought a TON of meditation music also. I tried yoga, but just cannot shut my brain off long enough to get anything out of it.

    Like others on this site, I'll keep you in my prayers.

     
    Old 05-18-2008, 08:01 PM   #5
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    Re: Please don't let it be a brain tumor

    Me too!

    History of panic and anxiety through my 20's. Has gone away with a lot of work and an occasional ativan.

    After my 2nd child (3rd pregnancy), I was having migraines. Then the nystagmus hit. I was seeing double!!! It freaked me out. I went to pick my daughter up at preschool. I couldn't even focus on the room and find where she was at. I had to close one eye to see relatively better. Yes, I was driving....So scary. It took about 4-5 weeks to regain my vision.

    After the MRI, I was dx with probable MS. Lumbar puncture confirmed. No brain tumor.

    Relax..anxiety does not help. Hopefully your answers will come shortly. I'm NOT diagnosing you. Stay positive.

     
    Old 05-18-2008, 08:51 PM   #6
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    Re: Please don't let it be a brain tumor

    Don't cross the brain tumor bridge before you get to it. Of course MS would be better, I understand that! They'll be able to rule out a brain tumor with the MRI. Let us know what the results are. In the meantime, calm down if you can--if you do have MS, extreme stress will be bad for you.

    It's good you're getting an MRI. You'll feel a lot better either way! I was super relieved when I found out I had MS, so I get it. Good luck to you, you're in my thoughts!
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    Old 05-18-2008, 10:07 PM   #7
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    Re: Please don't let it be a brain tumor

    You must be so freaked out..

    Good luck with the testing.

     
    Old 05-19-2008, 11:50 PM   #8
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    Re: Please don't let it be a brain tumor

    You poor thing, no wonder you're terrified! Try not to worry about the diagnosis, just focus on getting through each minute, each hour, each day. You are in good hands - your neuro will have you sorted out very quickly. I'd be shocked if she didn't order an MRI under the circumstances, and if a brain tumour is even remotely suspected - I'd say your test would be given priority. You'll have your answers soon, so hang in there and try to think positive (I know it sounds trite, but negative, depressing thoughts won't change the outcome)

    Hugs, my thoughts are with you ...

     
    Old 05-20-2008, 07:51 AM   #9
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    Re: Please don't let it be a brain tumor

    well I am not diagnosed yet either..I am in limbo like you are ,imagining the worst is pretty common for me to do. right away when my dr suggested it be MS but an MRI would be needed to rule things out,,I gasped and stammered out oh my god do u think maybe a tumor? he just smiled and said oh sadia . it'd be rare ,I'm thinking ms or meiners,,not sure I spell it right. I guess I dont even know whats next I suppose an MRI and a referal to a nerologist. like you I have no vomiting or headahces. just sinus nose pains.

    I have strange electrical shock stuff,,tinlgy ,creepy crawly stuff,ringing in ears,cool sensation on my left thigh,,just stuff I hate to talk about even but it's there. foggy thinking is one of the most annoying of all.
    I'm putting on the best poker face I know around my family so I dont look like a panicked freak,,taking care of myself but with a 7 and 2 yr old.. whats sleep? whats rest? I tryt o keep my mind occupied. but gee the 27th seems so far away,,yet I know it's only a week. I can do it as bob builder sais yes I can. I am with u! but we can do this..just hang in there.
    Sadia

     
    Old 05-20-2008, 09:02 AM   #10
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    Re: Please don't let it be a brain tumor

    I was presented with similar unappealing (!) alternatives several years ago. I had a (second) attack of severe back pain, went first to a GP (not mine!) who thought I was exaggerating the reflexes when he tapped my right knee (I did indeed feel like kicking him), then to my spine surgeon who found heightened reflexes all over my body, including in places where I didn't know I had reflexes.

    He told me that this time I definitely needed surgery--the disk was completely herniated--but all that was on hold because I had a central nervous disorder of some sort: it could be Ms, it could be arthritic constriction of the spine in the neck, it could be a brain tumor.

    Great news. So there I was in a wheel chair, wondering if I had a brain tumor. I felt lucky when it turned out to be MS--and I was only in the chair for two weeks. My back has actually recovered almost completely (I can hike, do pilates, whatever) and my MS is under control.

    Here's hoping you have as happy an outcome. And good luck through the grueling diagnosis process. Good for your doctor for insisting on looking further.
    --Kate

     
    Old 05-20-2008, 11:50 AM   #11
    Cristi601
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    Re: Please don't let it be a brain tumor - UPDATE

    Thanks to all of you for your kind thoughts and sharing. I just can't believe how many people have some of the same weird problems I do. My only vision of MS is my parents' very ill neighbor at the lake - who my father helps carry to and from her house so she can spend time in the water. She's all but lost her ability to walk and has the progressive kind of MS. Not sure of her history, but her decline over the past few years is my only frame of reference. And she's amazing - great attitude. It just never occurred to me that MS can look so different in so many different people.

    I went to the neuro yesterday. I feel better already from an anxiety standpoint. We did talk about brain tumors, but only because I raised it. She was a really great doctor - she made no promises, ruled nothing out, but made me feel much more at ease. Basically, where I found my GP, my ENT and the audiologist to be rather alarmist, I foudn this doctor to be very competent, thorough, and rational. Just what I needed.

    She also said she thought the central vestibular finding was a bit premature and she wasn't convinced of it yet. Could still be as simple as a problem with my eye muscle (which is what I originally told the audiologist I thought it was!!!). She was concerned about the obvious tremor in my left hand but still wasn't willing to say it was even related to the vertigo until she sees the MRI. We didn't even talk about MS. I got the impression that this was not a doctor who goes around guessing what something might be until she has a lot more info.

    I have an MRI scheduled for tomorrow. I am extrememly lucky that the area I live in is a suburb of KC with two really good hospitals and a Diagnostic Imaging Center so the wait to get in for an MRI isn't bad at all.

    Thanks again for your kind words and sharing your common stories. It helps immeasurably.

     
    Old 05-20-2008, 04:58 PM   #12
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    Re: Please don't let it be a brain tumor

    Definitely great that no conclusions are being jumped to. You'll get through this one fine hun!
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    Old 05-20-2008, 05:44 PM   #13
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    Re: Please don't let it be a brain tumor

    Some good news. You are on a good path. My prayers are with you and your family.

     
    Old 05-20-2008, 08:26 PM   #14
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    Re: Please don't let it be a brain tumor

    I'm noticing a few Newbies here. Welcome you all on board.

     
    Old 05-20-2008, 08:34 PM   #15
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    Thumbs up Re: Please don't let it be a brain tumor

    Cristi

    My prayers are with you and your family. Please keep us updated.

    Hugs Nadine

     
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