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LuvMyBaby

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Feb 1, 2010
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Loved one DX
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US
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MI
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Detroit
Hello everyone, I'm writing today with the hopes that someone here may be able to help me distinguish some of my symptoms or maybe point me in the right direction. My uncle was diagnosed with ALS approximately 1 1/2 years ago and is progressing very rapidly. I do not believe that I have ALS, but I think whatever it is that I do have, may share similar symptoms. Because my uncle started changing so quickly, I never noticed much about the details of his atrophy or weakness, since it seemed to just hit over night. Not literally....but, it sure feels that way. He never had any pain, which is one of the main reasons I don't believe this is my diagnosis. His first sign of anything wrong was a twitching in his chest that you could see and it never really went away or at least traveled anywhere else. I have twitching in my left upper arm, I guess in the deltoid area, and also where the arms bends in the same arm, along with my left rib area near the sternum. It's pretty much always those same spots and can last all day, mostly when I'm just sitting around or relaxing. Normally I would pass this off as normal but with all my other stuff going on, I find it odd. I also get what I think are called action tremors in my left thumb when I'm "pushing" on something, like pushing down the lever on the toaster. For the past 4-5 months the left side of my upper back has also been tingling, which increases in intensity when I'm standing. My shoulders and neck are extremely sore and my head almost feels heavy, where I just want to hang my head forward all the time. I'm not sure if I have what is true muscle weakness in my upper arms, or just from them being sore in general, but when I raise them up, particularly the left, it just feels like someone is pushing it right back down and I have to drop it. I also noticed in my left upper arm near the shoulder, I have a circular like dent that doesn't hurt, but looks funny. I'm extremely tired and developed some sort of rash across my knuckles that never goes away but faded leaving a pigmentation. My fingertips are red and cuticles are swollen, looking like I'm a nail biter. You can see the dilated capillaries around my cuticles too like little slivers and I also have Beau's lines and pitting in the nails. All of my lymph nodes are swollen, including arm pit, sub-mandibular and groin. I get a shooting type pain that feels like a shock into my fingertips and in the left side of my neck. I've had an x-ray of my back which showed a 9 degree spinal curve, which is news to me, but otherwise no slipped disc or anything like that. Then again, this was 5 months ago and none of these other symptoms were around then. I'm not active so there were no injuries. All my bloodwork has came back negative for anything auto immune, but I know sometimes that can take awhile. My vitamin D was low, so I'm taking supplements and no change, and my chloride was high with normal sodium, but my Dr really seem concerned with that. One Dr mentioned that I might have Dermatomyositis, another one said "no way." I feel like I'm being blown off now and they're treating me like a hypochondriac. I don't know if I necessarily have "atrophy" but I'm having a hard time finding a correct name for what some of this might be so if it's okay, I'd like to post a couple of pictures. I'm sorry that this is so long but thank you so much to anyone who took the time to read it. Thanks again.
 
HI~
I friend of mine was diagnosed with Dermatomyositis. She had the red rash on knuckles and muscle weakness.She said she felt like she could not even lift her arms in the shower to her head. She ached a lot as well. It took her a while to get a diagnosed and that was only when she went to U of M. She was shocked that I knew what it was as most people have never heard of these things, but I have been on my diagnosed journey. I am from your area and I suggest calling U of M's muscle dept that works with Dermatomyositis. She got no answers local but when she walked in to U of M, the doc knew right away and even took photo's of her hands as the rash was a classic sign. She is on meds and doing well.

Hang in there...

April
 
Thank you for responding. I really want to go out to U of M because even if I'm wrong, they'd definitely be the one's to tell me so. Would you happen to know which Dr. it was that she seen? I was looking at the list before I make an appt. and there's a pleathera of them. I hope there isn't a huge wait to get in there. I have an appt. made already with a Rheumo, not out of U of M, but he's considered "one of the best" and it was a 3 month wait. ::Sigh::
 
I agree with April, you should see a specialist. It really does sound auto-immune, or a myositis, and maybe a hundred other things. Is your uncle the only family member who has had ALS? I would not think those particular symptoms would even make you think of ALS had you not had a family member with it. I say see a Doc in the know, and relax and try not to worry.
 
I agree with April, you should see a specialist. It really does sound auto-immune, or a myositis, and maybe a hundred other things. Is your uncle the only family member who has had ALS? I would not think those particular symptoms would even make you think of ALS had you not had a family member with it. I say see a Doc in the know, and relax and try not to worry.

Yes, my uncle is the only one in the family with ALS. I really don't believe I have ALS at all, because of how my uncle's symptoms appeared anyway. He didn't really start off with any muscle weakness or anything, just the odd twitching, at least that I'm aware of. I'm leaning more toward a myositis I guess it is? I get the twitching in the areas of my body where I have the pain and the "weakness," so maybe it's just a stress reaction or something of the sort. I'm starting to get very frustrated because my blood work has come back normal, for the ANA and things like that, so my Dr's have basically written me off now. I'm at the point where all of my symptoms are severely affecting my everyday life, especially with my child which hurts me the most. I tried to get an appt. with U of M but they told me you need a referall, regardless if you have PPO. I have an appt. set up with a Rheumo a few weeks away and next week getting chest x-rays for my rib changes. I just want to feel normal again and be taken seriously :(
 
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