Uncertain - Please Help?

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Uncertain - Please Help?

Postby wisher » Wed Apr 01, 2009 1:50 pm

Hi, folks.
I haven't been officially diagnosed with MS, but under the circumstances, I am starting to believe that I have it. I've been going to a neurologist for 5 months and he hasn't been able to figure out what is wrong.

I've been doing a lot of reading and from the looks of it, some people with MS can go undiagnosed, or misdiagnosed for a while. I guess I just want someone else's opinion. Should I consider pursuing MS as a possible answer for my ailments? Below is an explanation of my symptoms. (I know this is long, but I really need some guidance.)

HEAD
- Trouble focusing/concentrating
- Memory problems, especially with short-term. I can forget something I just finished saying. I've even been told I've done/said things that I have absolutely NO recollection of doing/saying.
- Dizziness. I get weird "swings" of dizziness that make me almost fall over, and feel like I'm spinning. Happens any time: sitting, standing, lying down, turning my head, etc.
- Shocking head pains: Feel like a jolt/shock on the left side of my head. Varies in strength and frequency and seems to come randomly. Lasts only a second, but can occur in groups, like a few times in a row, or continually for hours, or maybe just once. The strong ones completely throw me off from whatever I'm doing. Lately it has been happening whenever I hear a loud, sharp noise, like something falling or banging.
- Trouble hearing and understanding sometimes. Especially when my attention is divided. If I am not looking at the person talking, there's a decent chance I will not understand what they're saying. Just sounds like gibberish. My boyfriend is getting tired of having to repeat himself when we talk on the phone.
- Sleepiness. I am always sleepy. All the time. it seems to be worst, though, in the afternoon and early evening. I can't remember the last time I woke up and actually felt refreshed. Every time I wake up, it is because I force myself to do so.

EYES
- Double-vision, especially when I'm very tired/fatigued. Happens most when I am lying down, on my side, and trying to do something like watch tv or read a book.
- Eye pain: Basically, it hurts when I move them, like to look to the side or look up. Sometimes it even hurts to keep them open, and I have to sit here and force myself to keep my eyes open.
- Light sensitivity: I prefer to be in the dark. The brighter the environment, the more I am uncomfortable and have to squint or cover my eyes. It feels easier to see when the lights are dim/darker. Dark, cloudy days are the best for me.

MOUTH
- Slurred speech. Happens most especially when I am extremely fatigued, or still waking up (which takes me at least an hour to become fully awake). I find it takes too much energy to enunciate properly, so I mumble or slur my words. Either that or the words sound fine to me, but are incomprehensible to anyone else.

BODY
- Overall Fatigue & Weakness: My body is always tired and feels weak. This makes things like standing, walking, going up or down stairs, and doing normal everyday tasks (like opening a bottle, lifting things, carrying things, etc.) difficult to do without a lot of effort.
- Bladder: Frequent urination, feelings of urgency (even though sometimes only a trickle will come out). Sometimes I feel like I need to go, but can't.

ARMS
- Weakness, difficulty carrying things and doing tasks like driving.
- Muscle cramps and spasms, causing involuntary movements. Sometimes repetitive.
- Muscles feel stiff and sore, like I've been working out (only I haven't, because I feel to weak to do so!).
- Happens on both sides.

HANDS
- Weakness, difficulty holding things and opening bottles/jars, etc.
- Muscle cramps, especially in my palm. More on left hand than right.
- Muscle twitches, especially in my fingers. More on left hand than right.

LEGS
- Weakness, difficulty walking and standing. Going up and down stairs requires concentration so I don't fall, and holding onto rails and walls.
- Muscle cramps and spasms, causing involuntary movements, like muscle flexing, leg twisting/rotating, etc.
- Muscles, especially quads, feel stiff and sore, like I've been working out (only I haven't, because I feel to weak to do so!).
- Happens on both sides.
- Sometimes I have to adopt weird postures while walking, due to the weakness and muscle cramps/stiffness.

FEET
- Muscle cramps, especially in my left foot. I feel that if I do anything to flex the muscle in the arch of my foot, it will cramp/seize up on me. It hurts and it makes it difficult to walk sometimes.
- Left is definitely worse than right
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Postby Lyon » Wed Apr 01, 2009 2:02 pm

Welcome to the site wisher.

Ease my mind and ask your GP if your thyroid hormone levels tested OK.

Bob
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Postby wisher » Wed Apr 01, 2009 3:31 pm

Lyon wrote:Welcome to the site wisher.

Ease my mind and ask your GP if your thyroid hormone levels tested OK.

Bob


Yes, they've checked me for thyroid problems, anemia, mono, heart problems (I do have an arrhythmia), sleep apnea, diabetes, migraines, and pseudotumor cerebri.

When the involuntary muscle movements started, they put me on an anticonvulsant and told me I had Dystonia. Then a week later they recanted the diagnosis and went right back to the "we don't know what it is" and told me to see a psychiatrist for "anxiety". Problem is that the anticonvulsant is also an anti-anxiety medication and the only problem it helped was the dystonia-like symptoms, nothing else.
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Postby Lyon » Wed Apr 01, 2009 3:40 pm

wisher wrote:Yes, they've checked me for thyroid problems,
Sounds like they're checking all the right things.

I'd been experiencing all the things you mentioned and a couple of months ago they found that my thyroid levels are way out of whack.

Best of luck and hopefully your search for a diagnosis will be a short one.

Bob
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Postby wisher » Wed Apr 01, 2009 3:51 pm

Thanks for the help, and encouragement!
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Postby wisher » Thu Apr 02, 2009 11:30 am

Does anyone else have any insight? Am I completely barking up the wrong tree here? =/
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Postby daverestonvirginia » Thu Apr 02, 2009 11:54 am

So have you had an MRI? I thought it is pretty straight forward now to be diagnosed with MS you have an MRI and either you have it or you don't. I understand if the MRI only shows one or two lessions, or if it shows none, than it becomes a guessing game and follow-up MRIs may be required to keep an eye on things.
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Postby wisher » Thu Apr 02, 2009 12:21 pm

Thanks for the reply, Dave.

Yes, I had an MRI in the beginning (~4 months ago), and was told that it was normal.

I've also had a lumbar puncture. At the time it was under the theory that I might have pseudotumor cerebri, so the LP was to reduce the CSF pressure, not to test the CSF for disease. My doctor said he sent my CSF to the lab for "basic tests" and I have no idea what that means or if it includes tests that would point to MS.

You're right, this has become a guessing game. Since this all started, I have gotten more symptoms (I started out just with fatigue, the head pains, and dizziness), and they have all gotten worse. I am frustrated that nobody seems to know what is going on, and my symptoms are only getting worse. Maybe I'm just desperate for an answer, and grasping at straws, but that's why I posted here, for some (in)validation or something!
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Postby daverestonvirginia » Thu Apr 02, 2009 12:44 pm

Well that's good your MRI came up normal. Could have been a lot worse, like mine which had lots of lessions. But, at some point your neurologist is going to have to let you know what they think, and the answer could be to start MS meds. From everything I have read lately it seems to be best to start treatment as soon as possible. I myself am on copaxone, supplements (vitamin d and Omega 3) and the Best Bet Diet. It's going to be a tough call without the lessions, but like I said better not to have them than to have them. Good Luck
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Postby wisher » Thu Apr 02, 2009 12:51 pm

Yeah, I know what you are saying. It's nice to have a positive report about my health and my body's condition. I'm not saying that I wish I had lesions showing up on my MRI -- I just wish SOMETHING would show up SOMEWHERE, so I could get some answers.

And what you said about starting treatment earlier, it's so true. Which is part of why I'm worried. I suppose I'm just paranoid. Something is definitely amiss in my body, and the longer it takes to figure out, the longer I am going without treatment and continually getting worse.

Sigh. Anyway, thanks for the input. :)
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Postby Lyon » Thu Apr 02, 2009 1:39 pm

Not that anyone here can diagnose you but you didn't mention if you are male or female, how old you are and how long ago the first of your symptoms started.

Does some event prior to the first symptoms come to mind, like an auto accident, a fall or illness?

Do you or anyone in your immediate family have a chronic illness...... "autoimmune" disease, bad allergies or asthma?

Bob
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Postby wisher » Thu Apr 02, 2009 1:48 pm

Good questions. I guess I was just trying to be (somewhat) concise. lol.

I'm female, aged 26.

The symptoms came along, seemingly unprovoked, 6 months ago. Around November 1, 2008.
    - 17 months before these symptoms started occurring, I had an auto accident. I went to a chiropractor for about 5 months.
    - I had some pretty bad sinus & ear infections ~2 months before the symptoms started.
    - Nothing else noteworthy, that I can think of, that could have been a "trigger".

My sister had allergies/asthma when she was younger, but they're not really a problem for her anymore (she's 24). Nobody in my immediate family has been diagnosed with any chronic or autoimmune illnesses. The same goes for myself.
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Postby Lyon » Thu Apr 02, 2009 2:37 pm

Hopefully someone else will hop in if they think differently but, although MS symptoms can be almost anything, there isn't anything obvious about your combination that brings MS to mind......at least for me.

You are right that "if" MS is diagnosed, the medical establishment stresses the importance of getting on treatment as early as possible.
Despite that, it's debatable how hurried you need to feel in regards to a diagnosis and getting on a treatment.

Of course you need to continue to be vigilant in your quest for a diagnosis but a correct diagnosis is more important than a timely one.

That's my two cents! :lol:

Bob
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Postby wisher » Thu Apr 02, 2009 4:49 pm

That's what I was looking for - that's good information, Lyon. Thanks so much for listening to me and giving me your feedback. I really appreciate it. :)
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Postby pinpricks » Thu Apr 02, 2009 5:32 pm

You have some symptoms i experience now and i experienced in 1992.
If you read my story:
In 1992 it all started from nowhere
- Twitching (as you have) everywhere
- Stabbing pain in my left ear (like someone was hammering nails inside)
- Paresthesia (feeling water flowing on my skin)
- Shaking like crazy (clonus?), mainly on left side.
- Loss of some strength on left side (couldn't lift the same weight on left side as the right side without shaking like crazy). No real strength loss (may be lost 10% ..)
EEG + EMG ... no explanation.
Twitching decreased with time, stay with some shaking going on right side too and both legs.
Looking on Web, look like i had BFS (benign Fasciculation Syndrome ... no real study on that).
---
Now i'm back to the same nightmare + more since october 2008
I too have urinary urgency without pain since 1 1/2 years.
Stabbing pain (pins poked into my bones) mainly in my legs.
Twitching goes up again.
Lot of paresthesia (tingling/pin and needle/prickly feeling).
.. etc
but
No true weakness.
Not dizzy (i was dizzy at some time ..)
No "brain fog"
-----
I would look at BFS for you (is BFS in fact one of the many face of MS?).
http://www.nextination.com/aboutbfs/
In my opinion i have MS. I had an incredible pain i never experienced before 2 years ago. And what is close is "MS hug".

Good luck.
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