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Leschand

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Oct 20, 2013
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Learn about ALS
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US
State
Oregon
City
Portland
Hi everyone,

Let me start by saying thanks to those of you who respond to this. I am really worried, and my physical condition keeps deteriorating. About 1.5 months ago, I started having this weird pain in both my hands/wrists. I noticed it coming on when I moused around at the computer (which is all the time). It grew in intensity for a about a week to include both forearms as well. Felt like I had carpel tunnel or something. Spent the next week with a chiropractor, thinking it may have been a sports injury. For about 3 days, everything got better and symptoms went away...

After those three days, everything went downhill! The pain came back in my forearms, and one of my calves cramped up tight all night. I saw my doctor who referred me to a neurologist and ran some blood tests, which all came back fine, minus an elevated bilirubin level. The next week both my calves cramped up again, and have been and continue to be tight to this day. I also have twitching all over my body now, and fascis in both my calves (constantly). I feel weak and tired all the time, body over. I used to body build 4 days/week, but I can't push myself to exercise anymore. I'm out of energy, weak, and I can hear my bones cracking with almost every step. My whole body feels weak, but my right arm/shoulder especially feel weak. My upper teeth/jaw also feel kind of numb, and I fear I might be clamping my jaws together in my sleep (never had these problems before).

I've lost 10 pounds this month, my hair is falling out, and I now have pink bands at the end of my fingernails - looks like Terry's nails. My sex drive is also non-existent. I'm seeing my neurologist for the first time in 2 weeks, but having a hard time hanging in there. I just started my first full time job 4 months ago, and I'm having difficulty keeping up. Lately, the pain in my forearms seems to have subsided (it kind of comes and goes), but I just feel super weak...

I'm not looking for a diagnosis online, but does this sound in the ballpark? Can symptoms appear this fast? Most of the reading I did indicate a slow(er) progression.

Thanks,
Andrew
 
Hi Andrew,
I am not a expert by any means but I doubt very much that what you are experiencing is ALS so I seriously wouldn't be concerned about that. You have so many different symptoms on so many areas so I don't know what you might possibly have. I would have thought they would have maybe found out something in your blood work up like a thyroid problem or some type of vitamin deficiency? I'm just throwing a few things out there. I even thought of anxiety going on with you. But, that doesn't seem to explain the fingernail thing. The clamping of the jaws I'm sure is due to stress. I was doing that for several months as well. You might try a multi-vitamin and see if it helps out a little bit. Good luck to you, Kim
 
Thanks Kim. I've spent the past week or so stressing that I have it, I'm glad you disagree! I'm usually not a worrier, but this has got me paranoid. It wasn't until I searched symptoms online that I stumbled upon this awful disease. Major feels for anyone who has it! I noticed from your profile that your dad has ALS... I hope he's still happy and enjoying life.
-Andrew
 
I would look for something else. It could be anything and looking up things on line is not a good idea. Once you get a diag nosis you can look it up but until then I wouldn't. I know it is hard but all you will do is freak yourself out. There are so many things it could be from simple to who knows.

Best bet is to wait the couple of weeks. Its not that long in the whole scheme of things. We have all been in your shoes and know how hard the wait can be. Try to do something relaxing and enjoyable. Good luck. I am sure you will be fine.
 
Thanks Vicki. I guess I'm just trying to make some sense of what's been happening. Of course, I jump straight to the fatal disease :) I'm still really worried though... It hurts just to move around, and my legs feel wobbly. I'll take your advice and try to relax... I'm wondering if anyone else has any input?
 
Hey everyone -

First, thanks again for dealing with people like me who are freaked out and on the internet (a bad combo I know). But I could really use some advice/reassurance.

I have some new symptoms: they include an electrical shock feeling when I extend my left arm out, and a sore muscle feeling in my right arm should and bicep. The shock is pretty nasty and I kept my arm in a sling for a week before it started to get better and disappear. With my right arm/shoulder, it feels like I just did a hard workout with heavy weights... There is some twitching in my bicep, but it isn't constant. I also still have the body wide twitching. The heaviness in my arm happens on and off for some reason. It usually sticks around for a day or 2 then goes away for a while. Not sure if this is anxiety related. All my strength seems to be there, even though the arm feels heavy.

I saw a neuro yesterday. Physical exam was perfect, and he did an emg on one calf along with something else.. He shocked me a couple times for that test. Anyway, the shock test was good and he said the emg was good too. It did pick up the fascis, but he said there was a distinct difference between als and benign presentations. He said mine looked benign.

I'm just scared really. I know worrying will get me nowhere but I just wanted to vent. I'm 2 months in, am I good to stop worrying? Do these new arm developments sound like typical als? Thanks so much for reading, you guys are awesome.
 
It is atypical that ALS produce pain sensations.

Elevated bilirubin levels can indicate different types of liver problems. Liver problems can also produce hair loss, weakness and fluid retention in limbs that gives a feeling of heaviness and sometimes pain.

Bilirubin can in rare cases indicate hemolysis, which means you can have a bacterial infection, or in even rarer cases have hemolytic anemia.

If you are still worried about motor neuron diseases I would suggest you ask for a lumbar puncture and an EMG, but I do not think it sounds like that at all, and I have been in the loop researching and asking about MND for a while.
 
Sorry, I just reread and saw you had an EMG. Apologies.
 
And further ( I am such a sloppy reader today! ), the pink band on your fingers you refer to can be Onycholysis, which is a marker for systemic disease, and can be found in patients with liver problems and thyroid problems, mainly hyperthyroidism.
 
Leschand I have exactly the same as you except I haven't been referred to a neurologist as my DR doesn't think it's necessary. I also have sore thighs and biceps, like I've done a work out but I haven't. Strange things going on.
 
Amylou, I'm kind of surprised your doctor didn't think it was necessary... did your symptoms happen out of nowhere like mine did? And it's extremely frustrating... being told me a neurologist that I'm healthy is reassuring but I don't feel healthy at all. There is definitely something going on. Have you read up on BFS? I have been lately, and I think my symptoms definitely match up a lot more closely (maybe yours do too). If the doctors can't find anything wrong with me, I've decided to settle on that, and just hope it goes away (soon would be pretty okay with me).
 
They know me well and I want to trust ans believe what they say, I'm just finding it hard at the minute, they have given me strength tests etc, MRI, ct scans and blood work, all were normal. It's really annoying, my thighs twitch constantly, all day and all night.
 
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