Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.
The nerves in the arms and legs start in a nerve cell called the anterior horn cell, then once the nerve exits the spinal cord, it is called a peripheral nerve. A neuropathy is a disorder of the peripheral nerve. ALS is a disorder of the anterior horn cell. Neuropathy and classic ALS are different entities. They are different clinically, on physical examination, and on EMG/NCS (the test which tests how nerves conduct electricity and how muscles respond). Especially after 3 years since symptoms started, the two are clearly distinguishable. However, there is what is thought to be a variant of ALS, what is termed the lower-motor-neuron variant or primary muscular atrophy, which is difficult to sometimes distinguish by examination, but the EMG/NCS can help with this.
Regarding the causes of neuropathy, it is important to understand that up to one-third of patients with neuropathy have no identifiable cause. One of the most common causes of neuropathy is diabetes, and sometimes only glucose intolerancs, or abnormal rises in blood sugar after a glucose load can be the only indication (this is called a oral glucose tolerance test). Other causes include but are not limited to hereditary/genetic causes (such as in a disease called Charcot-Marie-Tooth, in which there is a family history of sensory neuropathy usually from an early age associated with other clinical features such as high-arched feet), autoimmune problems (such as lupus (SLE), Sjogren's, Churg-Strauss (in which asthma also occurs), polyarteritis nodosa, which affects blood vessels), and demyelinating diseases (such as CIDP). Vitamin B12 and B6 deficiency, as well as excess vitamin B6, can also cause neuropathy. Some toxins, such as lead, arsenic, and thalium can cause large fiber sensory neuropathy. Other causes include abnormalities of protein metabolism, as in a type called amyloidosis or monoclonal proteinemia. In many neuropathies, both the sensory and motor nerves (the nerves that supply the muscles) are involved, leading to sensory symptoms as well as weakness.
If your EMG/NCS has not shown definitive neuropathy, you may have a small fiber neuropathy. There are 2 types of nerves in our body, large and small. The small nerve endings supply the skin and sweat glands. There are two types of sensory neuropathy: small fiber and large fiber (depending on the size of the nerves affected). With small fiber neuropathies, symptoms including burning or buzzing or other vague symptoms starting in the feet and hands then in some cases spreading to other parts of the body. The EMG/nerve conduction studies (NCS) (tests done to check for neuropathy) will not show an abnormality, and a definitive diagnosis can only be made with a skin biopsy so that the number of nerve endings can literally be counted. There are other tests of the function of small nerves that can be ordered, such as QSART testing which looks at how much sweat the skin makes, since sweating is in a sense of function of these small nerves. There are several causes of small fiber neuropathy, including diabetes, vitamin deficiencies, autoimmune problems
Continued followup with your neurologist is indicated. However small fiber neuropathies do not cause respiratory problems.
It would be important to exclude a separate pulmonary (lung) problem as the cause of your breathing difficulties. Sometimes neuropathy can lead to pulmonary problems, but a primary pulmonary or cardiac issue leading to shortness of breath should be assessed for.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
Thank you so much for your rapid and thorough response. I am much more
informed as a result of your response to me. I very much appreciate it, and will
keep you posted. Thank you ! Thank you !