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Chia01108

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Hello,
Although I don't have clinical weakness I have been experiencing weakness for over a year and have recently started suspecting I may have ALS. I'll try to keep my story short....I am a 47 year old woman. I am overweight and have been for most of my life.

About 2 years ago I wasn't feeling well and my Primary Care Dr put me on high blood pressure and cholesterol medicine. I began exercising as I didn't like taking the pills. I began to lose weight quickly and the exercise was making me feel weak. When I saw my Dr i told him that I thought I was losing muscle. He said no I was just overdoing it and losing weight too quickly.

I started experiencing tingling and a strange burning sensation in my right foot. I also started feeling a strange burning crawling feeling down my spine. I saw a Neurologist who scheduled various blood tests (Lyme, Vitamin D, B-12, ANA, Thyroid,etc) all normal. Did NCV/EMG of right leg only was clean. Had an MRI of brain, C-spine and T-spine ....nothing unusual.

Neurologist suspected Small Fiber Neuropathy so he did a skin biopsy just before Christmas which confirmed SFN. He ordered a glucose tolerance test which ruled out a sugar intolerance.
The burning sensation (not painful, just annoying) continued to spread up mainly my right leg and down spine.

I continued to feel weakness, at times while walking or standing, I feel like my legs won't hold me up. I also started feeling what I would describe as a numb feeling in right thigh. About 2 months ago I began experiencing what I would call mild twitching in upper thigh and on my back. While looking at my legs in the mirror to see if I could actually see twitching I noticed that my right thigh (dominant side) looked smaller than my left. I measured and it was smaller (not quite an inch).

I called the Neurologist and explained my newest sympthoms and told him I suspected ALS. He said no, couldn't be because my EMG was normal. I told him the "atrophy" was in my thigh, above the knee and he had only tested below my knee. He agreed to see me again and see if I needed another EMG.

I saw him about 2 weeks ago and he took some measurements and agreed right thigh was slightly smaller than left. He did EMG of thigh and said there was no weakness. He didn't test my back. He prescribed Gabapentin and said he'd see me in a few months.

The morning after I saw Neurologist I woke up with strange cramp like feeling in right arm and hand. It is also starting to feel weaker than left. I also noticed that my right hand looks smaller than my non-dominant left hand.

I am waiting for an appointment with another Neurologist....but I can't get stop worrying I have ALS.
 
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affected

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Hi Chia,

Your neurologist has done all the right things and assured you that this is not the onset of ALS. I would say the same - what you describe is nothing like how ALS begins.

Try going back to your regular doctor and asking for help with health anxiety while you are having the SFN treated. It sounds like the usual symptoms for SFN, so don't jump from a typical presentation of a common disease that has been diagnosed, to thinking you have a totally atypical presentation of a very rare terminal disease. That just doesn't make sense!

All the best treating this.
 

Chia01108

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Thank you for your reply and I apologize in advance if you think my anxiety doesn't make sense. I'll admit I'm anxious but I don't believe it's anxiety alone that brings me here. I'm really concerned with the weakness that I'm feeling and the atrophy that I can clearly see in my right thigh and right hand.

I understand that I have SFN (which unfortunately can't be treated unless an underlying cause is found which can be treated) but from everything I've read I don't believe SFN causes atrophy. In the last few weeks the crawly feeling in my back has gotten worse and my back feels stiff most of the time. Also although I've been suffering from dry mouth for the last year and half I seem to have excessive saliva in my mouth the last couple of weeks. I have to constantly force myself to swallow.

I'm waiting for an appointment with another neurologist but it's months away. Can someone tell me if it is possible to have atrophy without clinical weakness with ALS ? Also, since the neurologist never tested the muscles in my back during the EMG, I can't help but wonder if he had, would he have found weakness there. Lastly, I've been noticing I've been getting winded when going up stairs....could this be a sign of ALS that begins in the back?

I realize that there are a lot of people who have it a lot worse than me and I'm truly sorry for that. My prayers are with everyone who's suffering from this awful disease.
 
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Chia01108

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Sorry to post another question....I'm trying to be patient and wait for my neurologist appointment, but I've been having a lot of twitching while sitting, at the back of my upper right thigh/lower buttock area. I looked in the mirror this morning and saw that my right butt cheek is a lot smaller than left and there is a baseball size dent at the lower end of it. There is also a lot of sagging skin that isn't on the left side. Does this sound like ALS atrophy?
 

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No it does not, not when you factor in your current diagnosis and multiple EMG's which were within normal limits.
 

Chia01108

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Thank you for your reply. What bothers me is that the atrophy is all on the right (dominant) side of my body. I have no pain at all...tired and weaker than I've ever been in my life..seems like something more than small fiber neuropathy is going on. I'll just have to wait for my neurologist appointment.
 

Atsugi

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Chia, you didn't describe ALS at all. Believe your neuro or get another one. Good luck chasing this down, whatever it is.
 

Chia01108

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Thank you for taking the time to respond. I am waiting to meet with a Neuromuscular expert in Boston. I may not have ALS....but I feel it's something more than SFN since I have atrophy (some very slight and in other areas more pronounced) in various parts on the right side of my body.
 
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