For the last 3 months I have been having constant muscle twitching and a feeling of tension in my tongue/throat/jaw. These feelings make very worried and anxious. My neurologist has diagnosed me with small fibre neuropathy but I don’t think these symptoms match with the diagnosis. I am wondering what sort of neurologist I need to see.
About a year and a half ago I had what was believed to be a 9 day viral infection: head aches, muscle pain and extreme fatigue. Immediately after I started to have passagery feelings of numbness in my hands and feet, then constant pins and needles in the extremities, and after a couple months I had daily sharp, hot neural firings. About 5 months ago I had anotherbout of fatigue and muscle tightness, but this time accompanied with weird feelings like ants crawling in my skin.
I saw a neurologist who suspected MS. My brain (but not my spinal cord) MRI had some smallish lesions that might be MS. A lumbar puncture came back normal, as did auditory and visual EPs, the EMG andNCV tests for my legs. Tests for diabetes, autoimmune disorders, B12 deficiency, thyroid disorders, Sjorgen’s, etc. have all come back normal. So my doctor felt I probably had small fiber neuropathy .
Over the past three months new symptoms have emerged. My muscles twitch all over: arms, legs, torso, abdomen, neck, face. It started when I was put on gabapentin but has continued even after I stopped taking it. I get strange headaches, where muscles around my eye hurt, or most recently my jaw, esophagus and tongue feel constricted. The doctor put me on Xanax which soothes the anxiety but not the muscle tension. I get creepy crawly feelings at night in different parts of my skin.
I’d really like to know whether small fiber neuropathy consistent with all these symptoms. If not, what type of neurologist should I try to see to get a handle on what else is possibly going on?
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 a doctor.
Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.
It must be emphasized that in the MAJORITY of cases muscle twitches are benign meaning that they are of no consequence and are not resulting from a serious cause. In such cases, the twitches may be related to anxiety/stress, caffeine, and often occur after recent strenuous activity or muscle over-use. It is important in such cases to reduce stress/anxiety levels and to reduce caffeine intake. Tremors of the hands can be physiological that is exacerbated by stress/anxiety and caffeine.
Benign fasciculation syndrome, which I will abbreviate as BFS, is a condition in which there are involuntary twitches of various muscle groups, most commonly the legs but also the face, arms, eyes, and tongue. If the diagnosis is confirmed and other causes are excluded, it can be safely said that the likelihood of progression or occurrence of a serious neurologic condition is low.
When BFS is present but not particularly bothersome or disabling, treatment is not necessary. If severe and it requires treatment, there are a few medication options though this condition is not very common, and the research that has been done on its treatment is limited. Minimizing caffeine and stress, and treating anxiety if it is present, will improve your symptoms.
However in general (and please understand I am not trying to imply I feel this is the case in you), when fasciculations occur in the setting of associated symptoms such as progressive loss of sensation, tingling or numbness, weakness, trouble swallowing and other symptoms, the cause may be due to a peripheral nervous system problem. In general the symptoms would not be episodic and triggered by certain things but would be more constant/frequent without consistent triggers. The location of the problem could be the anterior horn cells, the area where the nerves that supply motor innervation to our body comes from. These are the cells that give off the nerves that allow us to voluntarily contract our muscles. The diseases that might affect the anterior horn cells include ALS (also called Lou Gherig's disease), a condition called spinal muscular atrophy, polio-like viruses, west nile virus, and other infections.
Another nervous system problem, neuropathy, may also lead to fasciculations. There will again be associated weakness or sensory changes. With small fiber neuropathies, symptoms include 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, and autoimmune problems.
If symptoms migrate (move from one place to the other) and are intermittent, causes might include seizures, migraine disorder or metabolic problems such as low calcium.
Often these symptoms may reflect emotional/psychiatric problems related to stress (what is called somatization disorder). The latter is a true medical condition whereby instead of a patient experiencing depression or anxiety, they experience physical symptoms, and once the stress is addressed, the symptoms resolve.
It is hard to say if you have a small fiber neuropathy. There are additional tests as mentioned above. Have you ever had a lumbar puncture to evaluate the CSF? I would suggest you follow up with a neurologist who specializes in neuromuscular medicine.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
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