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DaveB

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Jul 27, 2009
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Learn about ALS
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US
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South Dakota
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SW SD
For me it all started last February after a gallbladder surgery. I went home to heal up and started getting out and about a few days later. Then some weird stuff started happening. I would wake up at night with burning sensations in my shoulders and back. It would wake me up like clockwork at around 2:00 am, then no more sleep for the night. I had trouble eating because of stomach problems after the gallbladder removal and lost around 35 lbs.

I went up to Mayo Clinic and they did a bunch of tests. Chest and CT scans, scope down my throat, hoards of blood tests, everything negative. They told me I had irritable bowel of all things.

I went home and continued to have problems. I began having numbness in my arms, legs, shoulders, feet, etc. I went back to Mayo in April. They had me see the neurology department, a guy that specialized in small fiber neuropathy. He told me that my neruo exam was pristine. He had a neck MRI done, blood work, an EMG, and a sweat test performed. All normal. He told me that he didn't know what was causing my troubles. They had me see a physical medicine guy who prescribed an exercise program. Also they wanted me on a medication for anxiety. Anxiety I said, you'd be anxious too if you felt like I do...

So, I come home, start the exercise program. My family Dr prescribes an anti-depressant for anxiety. A couple weeks later I start to notice lots of twitching in my feet and calves. I read about SSRI's and find that they can cause this twitching. So I go off the medication and visit my GP. He draws blood to see if electrolytes could be causing the fasciculations. My vitamin D was low, so he puts me on a supplement. My D comes up. But the twitches stay around. The wax and wane, but are really focused in my left arch, causing my big toe to move around. I read on the internets about the possible causes, and I panic about ALS... I start to check myself over and notice that my left calf is skinny. It's about 1.25 inches smaller than my right. This is only weeks after having a clean EMG at Mayo Clinic, so I tell myself, well, you're right handed so you favor your left.

I start to do lots of walking and toe raises to try and strengthen the left calf. All I get is lots of stiffness and soreness, lots of fatigue. No increase in muscle. I also notice that my toes are skinnier and weaker on the left. I have lots of pain and burning in the left foot and toes and can barely wear shoes it is so uncomfortable.

So, I get back in touch with Mayo in September. They set my up with a physical medicine guy who specializes in spinal issues. He examines me and doesn't think it's a spinal injury. Yes, your left is smaller than your right he says. Most likely from an old injury. He could do MRI's but I didn't think it will be productive.

Winter comes. I try and go out pheasant hunting. The walking just kills my left foot with pain after lots of walking. It feels like I'm walking on bones, like there is no more padding in the sole of my feet. My left calf is really fatigued. My toes feel wet and like they are bleeding when I walk a lot. So I go back to my GP. He does more blood work to check electrolytes. No that's not causing the twitching it turns out. So he schedules me for a visit to a local neurologist. He would like an MRI of the brain but says the insurance will argue with him, just wait on the neurologist to order it he says. He is concerned about LMN involvement he says, scaring the heck out of me again. He also brings up BFS and MS.

Today I think I realized why my toes hurt on the left foot. I noticed that when I'm standing the toes buckle at the distal joint. I think they are weak and fatigued. They are definitely not as strong as the ones on my right foot. Also the bones stick out a lot more on the left foot than the right.:(

I was so encouraged by the clean EMG last April at Mayo, but here I go again. A visit with a neurologist on Dec. 2nd. What a treat.

Anyway, believe it or not, that's my abbreviated story. I am most worried for my wife and 10 year old daughter.
 
Dave,

Wow! It sounds like you've been through a lot, and there are numerous people on this forum who can relate to what you're experiencing (I’m one of them). If you're at the Mayo Clinic, you're working with the best and it’s only a matter of time before they find answers; however, if you’re dealing with a rare autoimmune condition, it is going to take a really long time before they figure out what you’re dealing with, so be patient. It's hard not to think the worst but you have to stay strong for both yourself and family, and recognize that whatever the outcome, you'll find eventually find answers and hopefully peace.

I've been experiencing diffuse twitching and dealing with all sorts of wonderful neurological fun stuff since December 2008. My most recent party trick is my twitching tongue that started yesterday and has been associated with tightness in my upper chest that has been causing a periodic dry cough that once complicated my breathing (chest x-ray normal). I've had two EMGs/NCSs (one on my entire left side and the other only on my left arm (last month)…left side has been more problematic) and both have returned normal. My blood work, MRIs, and all my bedside neurological exams remain normal too. I have no sign of losing strength or muscle mass. Although I'm not optimistic, I still wake up every morning and I remain humbled and grateful for each breath I continue to take. My advice: spend as much quality time with your family and avoid worrying about the things you can’t control.

Keep your spirits up and continue to work with the staff at the Mayo Clinic for answers. Good luck!
 
hi dave it does sound like you've been through alot.so i guess the mayo clinic haven't found a diagnoise for you yet huh.are you thinking that you might have ALS? I been having alot of twitching on my calves and burning and shooting like pain through out my body too.I am seeing a neuro doctor now waiting to go get an MRI of my brain on dec.so keep me updated when you find out your diagnois.hopefully is not ALS.goodluck.
 
hi there. I read your post and see that you've been having twitching and tightness problem since 2008.so have you got a diagnoise yet? I've been pretty sick since march of 2009.still seeing a doctor now but my family doctor is sending me out to see a neurologist.I too been having alot of twitching and severe muscle spasm.I am really worried that i might have ALS.the neuro is sending me to get my brain MRI this dec.hopefully everything is okay.can you keep me updated with your diagnoise.thanks and goodluck.
 
Dave, yes, this is a miserable road to be on. Take heart in the fact that your EMG's and extensive testing so far are negative! The beauty of the MRI is that it can show if something like MS is going on. It is NEGATIVE with ALS. Honestly, your symptoms do not sound like typical presentation of ALS to me. :] As far as the foot pain and issue, have you tried using a gel pad insert in your shoes to add some cushion? Good luck and in the meantime make every effort to not be online researching. It only increases anxiety and stress! If you read the sticky's at the beginning of this thread there is just tons of information and more than likely you will find that most of your questions have been asked and answered many times. :] I hope that you will not have this disease.
 
The point about staying off the internet research is well taken. It has raised my anxiety level exponentially. The symptoms are also a huge source of stress. Having numb/burning patches on arms, shoulders and legs. Where I have this burning, the underlying muscle seems very tense and sore. Most concerning however is the apparent atrophy in my left calf & foot, and the ease with witch they fatigue. This summer I did lots of exercise, walking 5-7 miles per day, along with toe raises and swimming. I'm sure I over did it, and maybe did more harm than good. But I was heck bent on trying to get some perceptible improvement from exercise. And I thought the exercise would be good for the stress. Now I'm really a mess...

Sure wish I could just wake up and discover that it's all just been a bad dream.

Thank you for the kind words.
 
Dave, the numb and burning pain patches sound like something besides ALS. More like a neuropathy, which can also impact motor nerves, like your lower left leg.

Your neuro appt is soon, so focus on the holiday and your family until then. Best wishes.
 
Went to a neuro a couple weeks ago. He ordered a brain MRI and a slew of blood tests. That all came back normal. Yesterday I had a nerve conduction and an EMG by a neuromuscular specialist. She did her training at Mayo Rochester and her residency at University of Michigan Hospital, then back to Mayo for more EMG training. She's been practicing for almost 20 years. She stuck several muscles in each leg and foot, what a joyous experience. When she got done, she said congratulations, you have no signs of LMN damage or large fiber neuropathy. She feels that the muscle atrophy in my left foot and leg are from chronic pain causing me to favor that side. She did a skin biopsy to look for a small fiber neuorpathy, whatever that is. I don't want to look, I'll just wait for the results. She said that for that, all they can do is treat symptoms.

She told me that the fact that I have been twitching terribly for at least 6 months and that my left leg is smaller than the right, if there was MND, she would at this point be able to find it.

So while I am still stressed about the discomfort that I suffer, I believe her conclusions and am very relieved. Especially since the doctors actually discussed that they were doing the EMG because they were concerned about MND. They did say that most people that twitch have nothing wrong with them, but some are very sick. My combination of twitching and one leg being thinner than the other was concerning. They told me to really celebrate over the holiday. The doctors were tempted to start some symptomatic treatment, which they said would include things like muscle relaxants. But they decided to wait for the skin biopsy results. I almost pleaded with them to at least let me try the muscle relaxant, but bit my tongue. I suppose they have their reasons for waiting.

Best wishes to everyone here. Whenever I am in church, I will light a candle for you all and say some prayers.
 
Good news! So many on here would be skipping if given such good news. Hope they treat your symptoms and all the best to you.
 
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