50 yr old male w no more tests...

[TimAlley]

I have read the stickies and have read posts here for a few months. I was waiting for all my tests to come back before posting to try to get some answers. Thank you for taking the time to read my post.

For the last 6 months my ankles have been burning. For two years previous my feet were burning as well. I started seeing twitches in left calf and then from there randomly throughout body. I then developed muscle spasms as i can best describe them throughout my legs and arms. They feel like miniature cramps, but not nearly as painful, just deep soreness. My ankles are also extremely tight.

I saw a neurologist and had the mri head, cervical and lumbar. Of course cervical n lumbar showed some messed up disks and some neural forminal stenosis. No big deal for my age.

Extensive bloodwork was all negative.

EMG/NCV just showed Axonal Sensory Nerve issue and issue related to disk. As she described it a clean report as fas as ALS.

Reflexes normal, Babinski all clinical normal.

No weakness or noticeable atrophy.

So my neurologist said congrats no MS or ALS. She said she has diagnosed 3 ALS patients this year and i was not gonna be her fourth, and welcome to the world of peripheral neuropathy, take Gabapentin and let me know how you are doing.

Just wondering if any of this sounds famliar to ALS. I am happy w her diagnosis. Just wanted to throw it out there.

Thanks again for your time,

James

 

[Atsugi]

James, I'm sorry to hear you've been diagnosed with peripheral neuropathy.
And I'm very glad you don't have ALS.

Your symptoms and EMG results point away from ALS and definitely point toward PN.
Just out of curiosity, are you diabetic and overweight?

 

[TimAlley]

Thanks for your time and feedback.

Unfortunately or fortunately I am not diabetic or overweight. I have typically exercised every night for years. I have a very severe pectoralis excavatum which my neurologist says is linked to a rare neuropathy. She is researching further.

I am sorry to waste your time. I read too many stories where PALS had neurologists say get out of here. I need to trust her as she has worked w Stanley Appel in ALS lab for years here in Houston.

I will mention something interesting. She said that people that have ALS are the nicest people. She said there has to be some correlation. I told her right away we could have skipped all the tests had she told me that because I for sure didn't meet that criteria.

I will sign up for peripheral neuropathy any day of the week. A few cramps and burning no big deal. I wish you well.

Thanks,

James

 

[lgelb]

Tim,
My husband had Marfan in addition to ALS, so when I see "severe pectus excavatum" I think of Marfan, which is associated w/ both neuropathy and myopathy. Have you been screened? If you have any other features, I would consider it. You don't have to be tall/thin, which is the stereotype.

You are in Houston, so you could see Dr. Dianna Milewicz or one of her colleagues at UT in the med center. She has a special interest in connective tissue disorders but is also a general clinical geneticist. 832 325-7100

I'm glad you don't have ALS. All the best.
--Laurie

 

[TimAlley]

Thanks Laurie,

As a matter of fact I am tall and thin. Very interesting. I believe I have another topic to discuss ith my neurologist at next appointment.

Thanks again. I hate to bothr everyone, but i
love this type of insight.

James

 

[TimAlley]

Thanks for responses from everyone. Super appreciate it.

Last follow up. These muscle spasms are beyond strange. Not even sure if that is what they are. In my calves, wrists, ankles, forearms, shoulders, even neck. Like very sore to the touch.

They get super sore and then subside. Once last week my forearm was so sore i had trouble opening mouthwash cap. Of course the next morning everything was ok.

I know nerves can really do a number on muscles, but this is body wide.

Any thing i mention sound familiar at all? Of course i know the easy answer is fibro but thought I would bring it up. May give me some more questions to ask neuro.

Thanks in advance,

James

 

[Atsugi]

James, I don't think anyone here is equipped to diagnose you over the Internet. We tend to stick to the question: Do I have ALS, which you obviously don't.

We don't want this forum to become a general health forum addressing every disease, because many of our members make extraordinary efforts to be here, using a foot to operate a mouse or using an eye-tracking device to slowly spell out words. So we like to keep this website focused on the needs of those who have ALS.

Good luck pursuing this with your doctors.