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Old 01-11-2010, 06:18 PM #1
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Default Newbie with a confusing case...help please

Hello there--

About 3 years ago I started getting widespread fasiculations. About 2 years ago atrophy showed up in my thenar/thumb muscle. I get exertional weakness, where my muscles will "die" after some exercise, but the strength usually returns within a few hours.

Some of these symptoms sound ALS-ish, but my doctors don't think so and I've had 3 EMGs that didn't indicate ALS. However, the last EMG showed that I had slowed latency in the Nerve Conduction Test in my arm, leading the doctors to say I had a slight peripheral neuropathy, which leads me to this board.

I also get problems with my eyes where my vision flickers, particularly when I wake up, go from a dark to light room (or vice versa) or watch a movie in the theater. This also comes with visual snow, floaters and temporary blind spots. I get mild tinnitus and have had countless episodes of parasthesia. I wake up every night with ring and pinkie fingers asleep, often times on both hands.

I suffer from migraines, I'm a survivor of childhood cancer (hodgkins disease) and I got a compression fracture to my neck a few years back as well. I take levoxyl for thyroid replacement and I get regular check ups for aortic stenosis in my heart and slightly dilated valves. I also have osteopenia in my spine and my bones crack like woah.

I sound like a wreck, huh? Ha; I'm actually a relatively healthy 27 year old male... most people around me have no idea that anything is wrong, and I can function fine in my life day to day. But at the same time, I know there's something wrong with my body...if it was just the twitching all day I would have gotten used to it by now, but it's the twitching +atrophy + weakness after exercise that has me particularly concerned.

If anyone has any ideas, I'm all ears! (Those are still functioning pretty well)

I'm gonna put this in here because I've never seen an emoticon group hug. Boo ya

Thank you in advance for any feedback.
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Old 01-12-2010, 06:04 AM #2
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Just wanted to welcome you to the community. You'll find lots of support here, and someone will be along who can direct you to a forum with the most pertinent information. Hopefully you've scrolled down through the index of forums to see what we have available.

A lot of us have been in the frustrating spot where you are--with an invisible, undiagnosed illness. Hang on. You'll see LOTS of group hugs in this neighborhood.
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Old 01-12-2010, 09:04 AM #3
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Hello, Andy and Welcome to Neurotalk.

It is hard to say on the net what is going on with you.

But I will say these general things may cause twitching:

1) low blood sugar (or very high sugar which is not getting into the cells of your muscles) About 70% of people with low blood sugar attacks report twitching.

2) low magnesium levels will cause muscle twitching

3) generalized weakness can be from low blood sugar, or an autoimmune disorder called Myasthenia gravis. This usually shows recovery after resting, as it starts up.

4) people with osteopenia may have low Vitamin D levels. I strongly urge you to get a blood test for this.
Here is a video to watch:
http://www.youtube.com/watch?v=TQ-qekFoi-o

5) Low B12 levels will cause nerves to not work properly and neuropathy is an early sign of this. A blood test for B12 will show if you are low. Anything below 400-500 should be supplemented. Many doctors use an antiquated range showing lower normals. Don't accept this interpretation. You can have this test done with the Vit D test.

These are the most obvious things to start looking at. But with your complex history of serious medical issues, there may be other more difficult things going on with you that will require a doctor's examination in detail. For example some visual and ear symptoms with arm numbness may be from an congenital condition called Arnold Chiari. An MRI of the head and neck will show if this is the case for you.
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Old 01-12-2010, 09:57 AM #4
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?hypoPARAthyroidism? related to the osteopenia....
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Old 01-13-2010, 02:38 PM #5
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Hi Andy, A question arose for me-What tx did you receive for lymphoma? have you had your kidney function tested? Secondary Hypo-Parathyroidism is related to kidney issues, involving Vit. D and Osteopenia or Calcium uptake issues.

Otherwise please check out the suggestions by Mrs. D. She is an invaluable recource of the latest information. Since you are young, lets hope you can maintain that youthful quality!

Welcome to this site, you will learn so much about self -care and compassionate empathy, it will help no matter what the dx turns out to be. Especially since you have been through so much already! I am sure you will offer something invaluable to others as well. Hang in there, one foot in front of the other.... Best Wishes TT
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Old 01-13-2010, 10:35 PM #6
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Hi Andy, and welcome to NT. We're so glad you found us!

This is such a great place with lots of caring, friendly, and helpful people.
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Old 01-17-2010, 08:51 AM #7
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Welcome to NT

Ms. D did give you some good info there. Vitamins help me.

Also, at what level did you fracture in your neck. That could explain the pinky and finger issues.

You could have some eye concerns that you need a good exam for.

You can have more then one problem. Hard to discern sometimes, for you and doctors.

Keep asking questions. You can learn a lot from others.
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Old 01-19-2010, 05:27 PM #8
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hi andy and welcome,

i can't offer much advice. make sure you have a good internist for your pcp.
get 2nd opinions and keep a sx (symptom) journal for your dr with sx's and dates.

you're in the right place for info and support.
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