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Merepage

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Well... I have not posted for 2 1/2 months...Thank you all for listening..Just trying to live with whatever I have and trust EMG's etc. Twitching since Sept 2012. I pass strength tests but find walking and climbing stairs harder every week. Can still jump up stairs with much more effort. Can walk on heels..Toes curl under when stroked..Diagnosed with small fiber neuropathy which hopefully explains why my feet feel like I have a ball of socks under them. So I am 8 months into this and I still feel mild progression of all symptoms.. I feel like my gait is getting weird, muscles tight in back, legs etc per physical therapist...Do any of this seem like a slow progressing ALS? I guess I need to trust the EMG from March and hope to get to 1 year still walking...Im scared and frustrated. Is my only option to wait and see?
Any encouraging words welcome.
 
It seems like you have your diagnosis? And if you can jump up stairs have a negative EMG and do well on strength tests it doesn't seem like ALS.

I say this not to be rude but trying to help. Do you belong to the neuro talk forum on sfn? If not you might find more help there

Good luck
Nikki
 
Thanks Nikki. I know I have neuropathy in my legs but I have just read so many "wait and see" posts that I just don't feel comfortable with my slow progression. Is ALS core onset really rare? My arms are heavier too. I guess there is no other choice but to wait and see how far this goes... Thanks agin for your reply
 
New symptom...Arms definitely weaker at shoulders but hands fine..no atrophy..Brain fog daily.. Like a dream state. Twitching since Sept 2012. Increased eye floaters.. If I have core body onset of ALS, would Emg be abnormal from limb testing? So scared from the arm weakness. Gait feels weak. But pass strength test done by ALS specialist ..none of this makes sense. Need peace. Make this twitching stop.
 
Could this be BFS?
 
I guess core body onset is my own term. Weakness is more proximal (hip, back, shoulder) than distal (hand, foot etc). If weakness is in raising arm at shoulder, but not in same hand, would EMG need to be on shoulder muscle (not lower aem) to show problem? Does that make sense!
 
No such thing as core body onset. ALS starts in distal extremities, unless it's bulbar onset. A proper EMG is done in ALL muscles of the body not just lower arm.
 
I guess I'm confused because I read initial symptoms of difficulty raising arms in patients. My arms are weak at the shoulder but I can squeeze strong. Can you be weak lifting arms but have complete hand strength with mnd? It's the gradual progression over 8 months that I can't shake. But 3 clean EMG and all neuro exams normal. Oh my. Just trying to live day to day. Thanks for all of your support. ALS dr at Univ of Penn said no mnd so I hope she is right. Time will tell
 
I guess I'm confused because I read initial symptoms of difficulty raising arms in patients. My arms are weak at the shoulder but I can squeeze strong. Can you be weak lifting arms but have complete hand strength with mnd? It's the gradual progression over 8 months that I can't shake. But 3 clean EMG and all neuro exams normal. Oh my. Just trying to live day to day. Thanks for all of your support. ALS dr at Univ of Penn said no mnd so I hope she is right. Time will tell

You state that you have had 3 clean EMG's and all neuro exams are normal and an ALS specialist has told you that you do not have a MND. Yes, I suppose you are confused to still be worrying that you have ALS.
 
Ok. Last post for a month..I promise. Is it common to have upper motor neuron disease first? I am totally convinced that I do not have LMD (clean EMG's with twitching). Over the past 3 weeks, my arms are harder to raise..everything feels heavier. I am fatigued all over, but not sleepy. I read that UMD can take 3 years to diagnose because there is no real test. Would anyone with UMD have babinski or Hoffman reflex at the beginning of UMD? My arms "feel" like lead (legs too) but I still have strength when tested. My reflexes are 2+ in most areas. Do i have to wait to not be able to raise my arms at all to truly know? I know you are all probably sick of me. I have felt ill every day for 18 months. You are all in a much tougher battle. I just need one day of feeling strong but it just won't come. I am not depressed or even anxious. Just frustrated by feeling terrible with no answers and every test under the sun. I am living each day to the fullest. My boys know i dont feel well but i am tired. How and when can i rule out UMD? babinski and hoffman normal. Any comments appreciated.
 
It could be a muscle problem not a nerve problem. I have neuropathy and myopathy both. Look into fibro or a myopathy of some sort.
 
Thanks Vicki. How were you ultimately diagnosed? Did you have similar symptoms and stabilized? Or progressive? Was your fatigued body wide or one limb. Does clinical weakness usually start with fatigue?
 
I have fatigue all over. I have weakness in shoulders, neck, arms, hips legs. Neuropathy in feet. I was diagnosed with a muscle bio after 5 years. I am 6 six in and it is progressive but slow progression. I take meds to help with fatigue and nerve pain. My neuropathy started first.
 
Hi,

my legs felt like lead in the beginning for me also..Now they are feeling pretty good after almost 5.5 mos. I cannot believe it to be honest. Like you, I did not have one good day for months. I have had 7 good days in a row and I am so thankful. My EMG and clinical exam with my neuro was clean. My legs no longer feel like lead. I had pain with my twitching and perceived weakness etc. I still have some numbness in my fingertips, and some twitching but it is all over and reduced by about 90% the last few days. I was diagnosed with post viral fatigue syndrome. Also known as CFS/ME. Were you sick when your symptoms started? I was and it did affect both legs and even one of my hands pretty much all at once. Awful. Anyway, the only thing other than time and rest I am doing is pacing myself like people with CFS (chronic fatigue) do and also in addition to my Vitamin D (I have a severe Vit D deficiency which adds to my issues) I take magnesium and I have reduced the gluten in my diet considerably. Anyway, since you feel like that all over I would speak to your doctor about investigating possible fibro or maybe a Vitamin deficiency. I hope you feel better soon, 18 months is a long time to feel bad.
 
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