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2792668 tn?1340126001

ALS, Transverse Myelitis or AutoImmune

What is wrong with me? My symtoms started about 8 months ago in neck and throat, sinuses. Then spine pain into my neck and head, with nerve pain.  Things have progressed.  I have stiff neck, very stiff muscles along with a buring sensation, sometimes feels like muscle weakness, I think I had foot drop at the beginning of my symptoms.  It's an effort to close my hands and sometimes I feel dizziness and tightness in my face.  I had severe body jerking for atleast a month - two months.  Every noise, slight movement or touch would make my body jerk.  I have some muscle twitching.    I am on gabapentin for nerve pain which only helps slightly and now I'm trying Savella, which so far has done nothing.  I have had three bouts of rashes that kind of looked like hives but did the rash did not usually change shape and the bumps stayed in the same place.  Each bout of rash lasted for about two weeks.  Rash was especially on chest and face but all over body. My cousin passed away with ALS last summer. Could I possibly have ALS with a secondary problem also?   Someone please help.
1 Responses
Avatar universal
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 cannot tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

I’m sorry to hear about the symptoms that you are currently experiencing.  

It would like to emphasize that in the majority of cases muscle jerks or twitches are benign meaning that they are not resulting from a serious cause. In such cases, the twitches may be related to anxiety/stress, caffeine, and often occur after 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 also be physiological, and exacerbated by stress/anxiety or 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, 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, 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.

I suggest seeking a full evaluation by a neurologist.  You may need basic lab work to ensure your blood chemistry, particularly your potassium, sodium, and calcium, is normal.  Additional workup may include EMG/NCS, EEG, or MRI depending on the clinical examination and historical findings.

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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