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willmonday

Member
Joined
Jan 13, 2013
Messages
18
Reason
Learn about ALS
Diagnosis
01/2013
Country
US
State
New York
City
Buffalo
First and foremost,
Thank you for taking your time to read and respond to those of us with questions. We appreciate your support and efforts.
I have had a variety of symptoms for the past six months. Symptoms such as tingling in face, feet, hands, arm and tongue.
muscle twitches throughout my body, numbness, pain in feet and hands.
My hands sometimes feel tight. I don't sense weakness.
I been to a reputable Neurological Center and seen two Neurologists.
I've been diagnosed with Small Fiber Neuropathy by abnormal reading on a skin biopsy test. My earlier blood work indicated I had a low vitamin B12 level as well.
Both doctors have indicated rather strongly that I do not have ALS or MS. However,
I have not had an EMG. I have had an MRI. I will have an MRI in a couple of weeks and additional blood work.
My questions are:
Can a diagnosis be done with an EMG? Are my symptoms of tingling and pain associated with ALS as I have read heard mix things on this?
How is ALS and Peripheral Neuropathy related?
Should I seek a second opinion or trust the diagnosis at this point?
Thank you in advance for your help.
 
Your neuros didn't order an EMG because you don't have ALS symptoms. Numbness, tingling, pain, feelings of tightness are not ALS symptoms. They are symptoms of neuropathies and b12 problems, so I'd say you have great neuros and you should stick with them. Put ALS out of your mind.
 
Thank you fro your response. I truly appreciate your response and support.
I made a typing mistake. Here's a follow-up for clarity.
During my second visit, when a diagnosis was determined of Small Fiber Neuropathy, my second Neuro did order an EMG which I will have in 3 weeks. I guess I am concerned with that and wonder why an EMG was ordered after a diagnosis was made. What would the EMG tell.
The second Neuro did say as well that I did not have ALS and wonder if that determination can be made without and EMG and just a clinical physical exam. The Neuro did say that I did not have weakness, my muscle bulk was good and reflexes were good.
My main concern right now is muscle twitches and tightness in my hands as I understand that senory symptoms are not ALS, but I heard mixed messages on tightness and worried that it's the beginning of a weakness progression. The tightness is in both hands and at times comes and goes. Comes on more in when using computer.
Sorry for the mistake, inthe first post. Thanks for your help.
Will
 
HI,
Does anyone have thoughts on my updated post which I clarified?
Thank you for your time and support.
Will
 
The emg I had determined neuro pathy in my feet and I am guessing my muscle weakness. It was after the emg that he decided to do a muscle biopspy which in turn gave me my diag nosis. I hope everything turns out ok for you. I wish you peace.
 
Hi, thanks for the response in regards to an EMG and what the Neuro may be looking for even though a diagnosis of Small Fiber Neuropathy.

Below are questions that were not addressed and a new one.
Can a diagnosis of not ALS be determined without and EMG and just by a clinical physical exam. The Neuro did say that I did not have weakness, my muscle bulk was good and reflexes were good.

My main concern right now is muscle twitches and tightness in my hands as I understand that senory symptoms are not ALS, but I heard mixed messages on tightness and worried that it's the beginning of a weakness progression. The tightness is in both hands and at times comes and goes. Comes on more in when using computer.
Sorry for the mistake, inthe first post. Thanks for your help.
 
Hi,
I also wanted to add that with the tightness in the hands, primarily the left - there is pain, discomfort on the top of the hand.
Thanks again for your time and responses.
Will
 
I have just started the neurological journey too. I have upper motor signs. PLS? It is very easy to get paranoid about every tingle or change in feeling or function. You keep wondering if something else is about to happen. Especially when you are twitching all over. Remember that anxiety can cause benign muscle fasciculations too. In the end, it is best that I trust my neurologist when he says it doesn't look like ALS.

Wiki on SFN says that the EMG will be to exclude other neuropathy and will just be used to support your diagnosis. Medscape is another great resource of technical info. I'm a vet and ignore the highly tech stuff but there is good info there for everyone. Low B12 is a good sign that is easily fixed. Iwould focus on that! Tightness in hands that comes and goes does not sound like my mnd. My tightness does not drift off.

Good luck with your journey.

Mike
 
Thanks again for the response. I'm trying to focus on neuros comments, I'm just confused in regards to diagnosis without EMG. I guess my question is, can a neuro say "not als" just by an office exam without doing an emg.
I appreciate your patience and understanding.
Will
 
ALS is largely a clinical diagnosis of upper motor neurone failure and lower motor neurone failure when all other things (like compressed spinal cord or MS) have been eliminated by clear MRI etc. At least that's my understanding. If you don't have hyper-reflexes somewhere (UMN) or weakness and atrophy somewhere (lmn), and are showing sensory signs that don't occur in ALS (some other syndrome), then clinically you probably don't have als and you don't need an EMG to prove it. Remember, if it doesn't look like a duck, or quack like a duck, then its probably a pigeon.
 
What Mistro said.

With no UMN signs on exam or signs of LMN issues on exam--then it's not likely to be ALS--as ALS causes BOTH.
 
hi! i'm wesley I'm new on this site and don't know how to ask questions could you help me learn how to post ?
 
Thank for your response on the clinical exam aspect.
I regards tightness in my hand, can a clarification be addressed: is tightness a symptom als? My left hand is tight, comes and goes throughout the day. My right hand is somewhat tight at times.
At times my there is pain in the hand as well.
I've heard mixed messages on twightness.
Thank you! The information you provide is helpful.
 
Will you might want to go over to the GBS/CIDP Foundation Forum. The forum is a bit slow these days, but there are people there who have small fiber neuropathy. (I know there is at least one). Most of the folks all have had EMG's and Nerve Conduction studies. It is routine in diag nosing neuromuscular disorders. Your doctors have no reason to query A L S because of your presentation of symptoms. Your EMG in 3 weeks will in all likelihood confirm that. Best of luck to you.

Laurel
 
Wesleyd

I've left a visitor message on your page explaining how to start a thread about your questions; I hope it's helpful.
 
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