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oystein

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Hey
I've been going through this for three years or so now... I'll start at the beginning.
I first started feeling weak in one of my feet.. there was twitching as well but normal feeling. Then my left arm started feeling weak and it started twitching too.
Then later, my toes started weakening and twitching and then my fingers (not all at once, started in the little finger on one hand, then proceeded to the thumb but now all fingers are affected).
Now both my legs, my arms, fingers, toes, neck, jaw, mouth (feels 'heavy' to smile) and stomach are affected. I twitch pretty much everywhere now and I feel very heavy all over.
Also, when I move my fingers, they 'shake' a lot.. I can't keep a finger lifted in fixed position, it will keep shaking as it feels very heavy to hold up.
The jaw is affected in the same way, it feels heavy to open and close and it shakes when doing so, making it annoying to talk.
My tongue has also been twitching but that's long ago now.
And, my eyes are starting to feel heavy as well.. when I read, they get tired right away, especially my right eye.
Also - nothing has ever gotten any better.. once I feel week someplace, it remains like that.

I've had some tests.. an EMG, 'brain scan' (don't know the term), seen a few neurologists (but they only do the normal "walk on your heels", squeeze your fingers, etc. tests) and had a lot of blood tests. I had a slight B12 deficiancy but I've been taking pills for that now for a long time without any help at all.

I don't know what to do, my doctor seems to have given up and seeing other doctors isn't much help either, they just have no clue and won't send me to more neurologists since I've seen a few already.
But it keeps getting worse and worse, albeit rather slowly.

Any input would be greatly appreciated!
 

wright

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If you have a B12 deficiency, pills might not help you if you aren't able to absorb it in your intestines. The stomach normally makes a protein called intrinsic factor which is essential for the absorption of B12.

In some people, the stomach doesn't make intrinsic factor, and so those people can't absorb B12. If that's the case, someone could take a pound of B12 a day and none of it would be absorbed. Instead, what would need to be done, is to get B12 injections. Have B12 injections been discussed? What is your B12 blood value?

Are your EMG's normal?

Do you have any sensory symptoms?

How are your reflexes?

You didn't mention atrophy: do you have any?

How old are you?
 

oystein

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All tests have come back normal.
I have normal reflexes (I think, the neurologist tested them and didn't say anything).
I'm 27 years old.
I don't have any sensory symptoms.
Athropy.. I'm not sure, the neurologist did mention that I had smaller muscles than normal in my hands but didn't seem too worried about it, for some reason. It's not something you can easily tell by just looking, anyway.

But it's pretty bad and getting worse constantly.. slowly but still, it's not stopping.

An example - I used to love playing video games but I can't do that anymore due to my fingers. They start hurting within minutes and they're very 'inaccurate', feels like I'm trying to play using my toes, kind of. It's hard to explain.
 

oystein

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Also, forgot to mention - the B12 deficiancy was very slight and the neurologist I saw at that time (before this started getting really bad, some 3 years ago) said it was too little to cause any damage.
 

planningguy

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The body has a few years supply of B12. If you had it checked 3 years ago, and haven't had it checked since, it might be worth checking again. Many of the symptoms you describe can be caused by pernicious anemia (a chronic condition caused by the lack of intrinsic factor Wright mentioned). B12 levels can be brought up quickly via injection. The treatment is pretty cheap as well.

If you are struggling with your present Dr. and others don't seem to want to send you to a neuro, you can look into going to academic medical center. I had to accelerate the diagnostic process by doing the same thing myself (Though for a slightly different reason. I live in a rural area and access to specialists can be limited).

Best of luck

Robert
 

oystein

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I will ask the doctor to check my B12 levels again this Monday.
Could a lack of B12 cause all the stuff I'm going through, though?
I have lots of twitching (sometimes very extreme too, for instance, the left side of my stomach twitched so hard that you could very easily see it through the thick sweater I was wearing), lack of strenght (I have big trouble writing and I get pain in my fingers from using a keyboard for even short periods of time.. and I can forget about playing computer games, my fingers aren't accurate or strong enough for that).
 

awieleba

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Hi oyestein,

I would make an appt with a specialist, not the local neuro. You could have MG or something treatable. You need to be seen by a specialist. But get your b-12 checked by doc in the meantime. Have you been checked for viruses?

Good luck and hang in there!

april
 

lovelily

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Hello...Does pernicious anemia show up on a regular B-12 test, or is it a specialized one?

Also would like to say 'HI' to oystein!
 

oystein

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Thanks for the replies! I have been checked for some viruses, I think.. but I'm not sure which. I was checked for lyme disease (I hope I got the right name, I'm terrible at remembering all these disease names and all that).
About MG - I read a little about it and it says it causes you to lose strenght quickly after activity but then regain it.. I only get worse and worse, I don't have periods where I feel better. Resting does help but if I use my fingers for too long (which is not very long at all these days), they will hurt for days afterwards.

I'm not sure I understand about seeing a specialist.. I thought neurologists were specialists in neurological disorders?

Oh and hi to everyone! :)
Actually, my name is Øystein but I chose to use O instead of Ø for all you non-Scandinavians :)
 

BethU

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About MG - I read a little about it and it says it causes you to lose strenght quickly after activity but then regain it.. I only get worse and worse, I don't have periods where I feel better. Resting does help but if I use my fingers for too long (which is not very long at all these days), they will hurt for days afterwards.
Actually, my name is Øystein but I chose to use O instead of Ø for all you non-Scandinavians :)

Hi, Oystein, just a quick note on "resting" and MG. I spent a lot of time earlier this year reading MG Forums, and my impression is that doctors may say MG patients immediately recover their strength after resting, but that is not what most MG patients say.

Many of the MG patients that I read posts from experienced great tiredness and weakness, and simply resting never fully restored their energy. Patients did have better days and worse days, and during better episodes, they might feel better after resting, but it is not nearly as mechanical a process as the websites imply.

So if MG is a possibility, I'd see a neurologist and have him/her run some blood tests.

Good luck!
BethU
 

szzq

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Sounds so familiar to my symptoms

I just wanted you to know that I share your frustration regarding the Physicians. You begin to feel frustrated and don't quite know where to turn for medical attention as it begins to get so costly.
 

oystein

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Thanks again for the replies! I'll bring all this stuff up to the doctor.

And szzq - it *is* very frustrating! Fortunately we have universal health care here so I don't have to worry about the financial aspect.. but the huge downside is that it's rather slow, especially for me because I'm 'falling between the cracks'.. they don't know what it is and so they don't seem to prioritize me. It's incredibly annoying.
 
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