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brianv

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Hi - I've read much of the forum (and all the stickies) and am so impressed with the quality of information and compassion shown here. It feels like a real community.

I'm here because I'm going in for EMG/nerve conduction testing on May 10. This is after 9 months of testing and worsening symptoms that include weight loss (from 180 last summer to 150 now), loss of muscle mass, weakness in arms and legs (everything feels heavier to pick up, etc), lack of stamina, fatigue, some minor difficulty swallowing and breathing at night - and other symptoms, including tingling in arms and legs, cognitive fog, memory issues, and, most recently, fasiculations in my legs, mostly. It all started with a sudden fever last July and I haven't been right since.

In any case, my brain and upper spinal MRIs are basically clean - although there may be one lesion in my cervical spine (three neurologists - at Georgetown, Hopkins, and NIH - disagree about this). So my case seems to be a mix of symptoms of MS and possible motor neuron disease. The unintended weight loss, in particular, is not a common MS symptom, and my MRIs do not point to MS either.

My question to the group is - does anyone have, or know of, mixed MS/ALS symptoms? That is, ALS atrophy + sensory symptoms like tingling? I realize both of disease labels are just that, labels - and that everyone is individual and will experience neurological illnesses differently. And that there may be plenty of crossover between progressive MS and ALS - and that some people will never neatly fit into either category.

My life has contracted over the past 9 months and I can no longer do many things I used to enjoy, like hiking for any length. As for my career, I'm a reporter and working is tough for me now with the mental fog and memory issues. I can't just rip out articles like I used to. And that's tough - I worry about my job and my career.

In any case, if anyone has any thoughts they want to share, let me thank you in advance.

Brian
 

ottawa girl

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Hello Brian,

Sorry you're going through this, but it sounds like you are getting excellent care. I have ALS and I've never had tingling. Nor have I experienced weight loss - in fact the 30 lbs you lost, I gained over the past year. ( Likely due to emotional eating and less activity) My brain fog, I think, comes from fatigue. I only know one person who was initially diagnosed with probable ALS and it turned out to be MS. The EMG will hopefully give you answers. I will keep you in my thoughts and prayers. Hang in there.
 

vickim

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Hi Brian

You say it started with a sudden fever last july? Were you tested for lymes or erlichiosis? Have they looked into muscular dystrophy? Alot of your problems sound like possible md. There are many types of md. I have mitochondrial myopathy and neuropathy and you describe alot of what I have except the weight loss. It was found with a muscle bio.

All these neuro diseases mimic each other and that is why it takes so long to figure out. I hope you get some answers soon. Keep us posted.
 
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hjlindley

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I have ALS but the tingling I get is from a pre-existing condition in my lumbar spine. It's been there for years and as the muscles in my spine get weaker it does get worse. But the ALS is not causing the tingling the degeneration of the lumbar spine is. Hope that helps.
Hollister
 

brianv

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Belated thanks for your answers - I appreciate them. I did get the NCV/EMG test. The technician found a nerve 'blockage' in my right hand. Then a neurologist performed an EMG but only on my lower right leg. He said it looked normal. But I didn't have my arms tested, or my neck or face. I do have a bit more trouble swallowing now than I used to. And my legs keep getting weaker. So who knows. If this is an autoimmune condition, I want to try IVIG to see if it helps. So I think I'll go to a rheumatologist next. I've had worsening symptoms for 9 months and the fatigue is bad. I did get tested for lyme (antibody test was negative - an immunologist last week ordered a second lyme test, not sure which type). My main neurologist, last I saw him, said, "Hang in there champ," which sounds like, "I have no idea what's up." He reassured me my presentation did no look like ALS, because ALS "does not have sensory symptoms." Anyway, I just wanted to thanks the folks who replied. I guess my diagnostic journey will continue...and I realize I may never get a label. (Not that I won't a label - I just want to feel better!) Cheers, Brian
 

brianv

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Oh, I'll also say my reflexes tested "3+" which I guess means "brisk". Not reassuring!
 

brianv

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And, finally, forgot to mention my Babinski sign was "equivocal" - which I guess means it's possible positive.
 
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